Journal History
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Tuesday, September 13, 2011 1:43 PM CDT
Hello,
My baby had his 13th birthday in Heaven! I hesitated to even make an entry here but knew I needed too. It was a horrible day of missing him and all that goes along with it but thinking about all the red balloons going up in his honor, made me crumble. There were people all over the world that sent red balloons up for his birthday and we thank each one of you for helping us get through the day. Kayla and Will came and that helped so much. I know there were several that prayed for us, thought about us, lit candles, as well as missed him too that honored us with their thoughts. We are grateful.
I know it was different for the ones with FA and I felt bad for them too. I know it is a reality for them.....a wake up call and it hurts. As much as Jeff and I suffer every day with a gaping hole in our hearts for our loss, I know it's as bad for the ones with FA. It's hard to deal with a loss, knowing you will face the same reality one of these days. It isn't "IF" it's "When" for them. FA equals death...that's reality. Cancer equals death...thats reality..if they don't go into bone marrow failure..they will get cancer. If they are blessed enough to not get either one..it would be a major miracle. That's life. How we deal with these truths is up to us. We can face the reality and accept it..that's the key..live the life that God gave us with a positive attitude and make the most of our life on earth. Or the alternative is to self destruct...skip reality...pretend it doens't exist...block it from our minds or try too...it never works...it remains in our hearts and minds...the party life will NOT make you forget you have FA. It only prolongs the pain, the heartache, and the chaos and eventually creates more problems. Yes, my heart is still with the FAmilies and always will be. I will continue to pray for them and encourage them in any way possible.
Yes, Nicholas you have definitely changed me, our family, and all the FAmilies you have touched. Your love continues to pour out and touch others even after you are at peace and pain free.
What better celebration for your birthday than to be with the one that created you! It would be pure heaven....
Blessings and Bear Hugs,
Donna
Wednesday, August 17, 2011 6:53 AM CDT
Hello,
10 months since our baby made his flight home. It seems like forever.....I cannot think of one thing that I have accomplished! I've muddled through each day. I totally lost my motivation..well almost. Spencer does keep me moving and for that I'm thankful. He has had his struggles as well. I took him for a routine eye exam and they found a hole in his retina! It appears to be trying to heal so they are going to watch it every six months. If he has blurry vision or like a blind/curtain coming down in his sight then we will have to go to them immediately. It would mean that fluid is leaking out and his retina becoming detached, requiring surgery! It seems never ending at our house.
Nicholas' birthday is September 10 and we are planning a red balloon release in his memory at the Strouth Lane Cemetery around 2 pm if you can make it! If not, please release a red one where ever you live. I wonder how many will be released! I can imagine all the red balloons going up all over the USA! I told Spencer, he should write notes to stick in them to see where they land. Hopefully, not hung up in some tree! Nicholas loved the color red! He never wavered with any other color...just red! I miss him so much. He loved his Momma too! Unconditional love...so precious. I have found a lot of love notes he has written down through the years, to Bub, Dad, and myself. He was just full of love. I miss those little arms around my neck! No one will ever hug me like that ever again. I love my baby and nothing will ever be the same again either. We all miss him. How on earth could we not? He was a pure little angel but had a mischieveous streak a mile wide! We have the promise to see him again and that helps too. I know he is in perfect peace, without pain, resting in the arms of Jesus. I cannot wait to join all of them in Heaven! I'm thankful that Jesus made a way for all of us to go be with Him for eternity! God is awesome!
Blessings and Bear Hugs,
Donna
PS Mamaw update: she continues to get weaker and weaker. She is having mini strokes almost continuously and we can tell she is forgetting more and more. We just about have to tell her every move to make. How she remembers the tune to all the songs is simply a God thing...an amazing miracle! She is still the sweetest woman on earth though and I love her dearly.
Friday, July 8, 2011 7:06 AM CDT
Hello,
Next Sat will be 9 months since our baby went to Heaven and resting in the arms of Jesus. In one way, it seems like forever. Time does not heal....it hurts. I still miss him so much. We went to Camp Sunshine and it was bittersweet! Camp Noshine without Nicholas there. We built two arbor benches, one will be named Nicholas' Nook and the other Spencer's Space. They are the Boggs Bears Book Nook! The volunteers will be taking the 3-5 year olds down there and reading to them! The building beside of them contains a chapel and a library! They are back in the woods a little ways overlooking the lake! Nicholas would have loved them! He loved outside and reading! While we were building them, a family of skunks were in the woods beside of us and their aroma overtook the smell of the cedar most of the time! It's a very serene place and a great place to chill, pray, relax, and just unwind. I'm sure everyone who sits a spell will have their spirits renewed, get a different prespective on their day, and just find solace. I told Jeff that I think it will become a place for the mom's and dad's! Sometimes all the information at camp can become overwhelming and I know just the spot to go too! John's parents came down a lot too and we talked and talked! It was wonderful because we were sharing our grief and the special memories of John and Nicholas at camp. You can also watch the waterfront activities while sitting there. Seeing the children enjoying themselves, hearing the laughter and delight, enjoying the sunshine, and watching the boats out on the lake is so peaceful. So the next time you are at camp and need a break, find the nook and relax! I think the volunteers need a place to download too! Andy said he would love to volunteer to read to the children down there too! Hopefully, they will catch the skunks and the aroma of the nook will then be enjoyed to the max! Did I mention that it poured the rain and we used umbrellas to shelter the tools under! Jeff was soaked to the bone! We cut out most of the material inside the gazebo and then assembled it on site in the rain and between showers! Jeff found a Jim Shore wishing well at Lowes and a couple of butterflies and placed them between the arbors! The finished product was beautiful! Now with the wish balloons, wish boats, we now have a wishing well! They are going to landscape around it and add a couple of Adirondack chairs as well. Hopefully, Nancy will email me a photo! I think she will have Jeff lined up for projects while we are at cammp from now on! I think that will help him as well. We wanted to help to repay all the joy that Nicholas had at camp! We will never repay all of that! We are indebted forever! He was definitely "Mayor of Camp Sunshine!"
I know he was a God sent child to us and we will never forget him but its sad to think that others may. I hope no one ever forgets him! He was a special little angel that is for sure. I long to hold him, smell his wonderful smell, feel his arms around my neck, feel the peck, peck, peck of his little fingers against my back, see his beautiful smile, hear his laughter, see that little beam of mischievousness in his eyes, see those arms crossed and foot patting when I'm speaking to another baby or holding one!, hear him singing, hear his Nicholese jabbering, hear him and Spencer playing...I could go on and on of what I long for..his presence, he was a beautiful pure, innocent loving sunbeam. I'm so thankful he was given to us even for a short while, for he was truly a gift and bless our home beyond measure. I know Spencer misses him so much!
Spencer has been having joint pain and I finally got him into the arthritis specialist in Kingsport. They did lots of bloodwork on him! He does not have arthritis but he has had Rheumatic Fever! His antibody levels against RF was 8000! Normal high is 200! RF can damage the heart valves, brain, cause joint pain, eat the red cells, skin nodules, and cause other complications so the key is to keep the strep germ away with antibotics until he is 18!!!! Can you believe that? We think it was in 07 when he broke out in hives after they gave him a shot for strep and we thought he had an allergic reaction to penicillin but it was an autoimmune response from the RF! I'm just thankful that I took him and the Dr tested him for it! Now we know his joint pain isn't growing pains! They will retest his blood again in August and hopefully, the levels will be much lower then! Can you believe this?
Blessings and Bear Hugs,
Donna
Tuesday, May 3, 2011 11:56 AM CDT
Hello,
See the Team Nicholas logo at the top? We are making t-shirts with that logo on it! All the profits will go to FARF in memory of Nicholas. If you want a t-shirt ordered, please contact me as soon as possible.
Blessings and Bear Hugs,
Donna
Tuesday, April 26, 2011 8:26 AM CDT
Hello,
Team Nicholas is getting geared up for FUN DAY FOR FA! We are planning lots of games and inflatables for the children to play on! We feel the community has supported us beyond measure and want to provide a play day for the families to enjoy! It is a fundraiser to help other children like Nicholas who have FA. To find better treatments, possibly a cure, and help families get to Camp Sunshine! We are greatful for all the volunteers that will be helping us that day and for the donations as well. Money, prizes, and your time is greatly appreciated. We are having: 5K 4 FA, registration begins at 8 am, and all the other activities will be available around 10 or 11 such as: Face Painting, Inflatables, carnival games by the First Baptist Church Youth, Cloggers, Train Rides, Babbles the clown, and for lunch we will have BBQ by Greg with all the trimmings, baked goodies, Hot Dogs, and hopefully lots of F U N!
I'm getting so excited! We will have a table with Nic's Angels Jewelry by Krisstina King and family and T-shirts will also be available for purchase! Greg will be pre-selling Smoked Boston Butts for $30 and they are delicious! So call Greg and Jayne Sluss to place your order!
It is an honor to have a fun day in Memory of Nicholas. He was a precious, precious gift from God and filled our lives with beautiful loving memories. We miss him so much and always will.
Blessings and Bear Hugs,
Donna
Wednesday, March 23, 2011 7:32 AM CDT
Hello,
I know I should have updated long ago but just couldn't bring myself to. I continue to miss my baby so much, it's like a heartache that is constant, never ending, and so painful. Heart is breaking, breaking into shoulder shaking sobs at the drop of a hat without reqards to were you are, seeing so many items that just remind me of him and all he liked to do. Cowboy boots, rubber snakes, butterflies, and Baby Black Girl with rounded belly that would just thrill him so much with expected kittens to play with and causing many trips to the barn looking for them! Dracula teeth, I've found at least a half dozen! Camp Sunshine boats..one or two from every year he went to camp! Everywhere I look I see something.....everything he was in to, liked, or played with, which is everything in the house and outside as well! He just lived to the fullest, every day he would laugh and smile. He enjoyed every second of every day! I miss those glinting little dark brown eyes, glinting with mischief! Oh how I miss those hugs! He was the best hugger in the world! All the little talks, late at night, I cherish every one of them. Calming his fears, his worries about his future wife, children, and what he would do for a living to earn money! He was a little worrywart, just like his Mamaw! She will forget and ask about him and I'll tell her that he is in heaven and she will say, "Oh I cried and cried!" She loved him so much! Everyone did and he touched so many lives. I'll never know the range of his love, how many he touched and reached with the love of God..like no other. I thank God for allowing us to be his parents, it is a priviledge and an honor to be the ones that took care of him. God's Lent Child is a wonderful poem. I know he was only borrowed for a short time and I cherish every second we had together. God called His child back, He knew his little body was worn out! He fought so hard for so long. He would push himself beyond his ability at times but he never complained other than saying, "I'm tired!" He was a trooper! I could sing his praises for the rest of my life and never tell it all, the joy, happiness, delight, sweetness, humblesness, impishness, etc! He was our pure sunshine and will always be!
Amazingly, I spoke with another FAmily last night and guess what the little boy said to his mother! "You are my sunshine!" He didn't know Nicholas nor has his mother read this site! I think that all FA children are pure sunshine! Little sunbeams sent down on earth to show God's pure love...like little angels! I know nothing will ever be the same in our house and family for we have all changed. God's love and plans for us are far above our comprehension. I have to praise Him during this storm for only HE knows what is best for us at all times! We may not understand it now or ever but I know God understands our hurts, pains, and our ramblings in the dark until we find HIS hand again so we can get back to taking tiny steps again times. He knows we will survive death so we can live again! He created us and knows us by name! I'm so glad to call him Father.
Please remember John Hanna as he is on hospice now. He is tired and body has fought so hard as well. Rem. his wife Racquel who has been so faithfully by his side during all of his journey! He keeps seeing little boy at his ICU door....Racquel said it must be Nicholas helping him!
Blessings and Bear Hugs,
Donna
Wednesday, December 29, 2010 7:30 AM CST
Hello,
Our hearts continue to be broken and it seems to get harder as each day passes. Absence does not make the heart grow fonder! It hurts! It rips your heart to threads. It's a void that will never be filled. Time does not make it better. Time drags by.... I miss him so much. All we have are memories.....happy ones that keep floating by but that only makes me miss him more. I loved that child so much! He loved me too. He loved his dad and brother too. He loved everyone. He was such a special gift that just kept on giving. He still is. He was so little but his impact on everyone he met was phenomenal! God's plans are perfect in every way and I realize that He only lent Nicholas to us for a while. I just wish it were for a much longer time. I know Nicholas is free from pain and that makes me happy on that part. I know he is free at last in every way but I miss everything about him. The house is too empty. I go home and think...The Silent Home. His presence filled every corner, his spirit was so alive and welcoming. I cherish every second we had together, his smiles, his laughter, his smell, his Nicholasese that only he will ever say, his snuggles, his "I love you Gommet, I love my family, I love you Bub, I love you Goppin" notes and everything else that he was. I miss my little meat processor! He chewed up meat but didn't swallow it! I miss my sunbeam. I miss him shaking his head in disbelief about this or that! He was such a character! I miss him stomping off and swinging those arms when he was agitated. I miss his hugs and kisses. I miss hearing him breathe. I miss him playing hide and seek. I miss the TV blaring! I miss his theatrics. I miss his sweetness. I miss his singing. I miss hearing him talk to Baby Black Girl. I miss hearing him on the phone with Daddy Bear playing guessing games. I miss hearing him quarreling with Papaw..."Now Fletcher Strouth! I'm not trading Baby Black Girl for one of your cats!" I miss hearing him and Spencer jabbering. I just miss HIM, every fiber of his being! I know Spencer misses him, as he was his constant companion for his entire life! Spencer still needs someone with him at all times...I don't think that will change for a while. I know everyone else misses him too. Thinking about all the "firsts"....first Thanksgiving, first Christmas without him, well thinking about his "lasts" was just as heartbreaking! His last time at church, his last time at camp sunshine, his last Christmas... Spencer woke up one morning and was snuggling with me when he thought about all Nicholas' lasts for the first time and it really made him sad. He tries not to think of him so he won't cry. Now, he thinks every time that I'm crying that I'm thinking about Nicholas. We are all dealing with different stages of grief at different times but that is also helpful in helping each other through the process.
Spencer had a wonderful Christmas. I guess we over compensated but that is ok. It was a hard day but so is every day. Nicholas was thrilled with the smallest of things and remembering him opening his gifts and looking through photos of past ones was heartbreaking but we survived. We watched a video of "Heros Among Us" that was produced by camp volunteers: Andy, Joel, Amanda, Mike, Gina, and Jillian, that honored Nicholas. It made us cry. This Christmas just wasn't the same. Not only because of Nicholas but because all the family didn't gather at Mamaw and Papaws. Mamaw and Papaw are getting very feeble. Mamaw is getting worse every day and I can tell such a big difference every week now. Papaw isn't feeling very well and dealing with everything has really taken its toll on him. I wish I were superwoman and could do everything that I want. I didn't realize that I was so tired and exhausted. I just cannot seem to bounce back like I'd like. I don't think I'll every be the same again.
Forever missing my baby,
Donna
Wednesday, December 8, 2010 8:19 AM CST
Hello,
Time.....7 weeks feels like an eternity! I miss Nicholas more and more each passing day. We are doing ok...surviving the best we can. It's very hard. I have to do things for Spencer and that helps. I've cleaned out Nicholas' clothes, his medical supplies, and that was hard to do but when you have too it's theraputic I guess. We had to take the trundle bed down and that was hard to do but necessary to let Spencer redo his bedroom. He wants to do it in animals. I think when you have another child that needs his Momma it helps to move forward. He loves Animal Planet and wants his room all in animals. Walls painted in different animal themes, Artic, desert, jungle, and forest. I've enjoyed planning it and thinking on what all we can do. He is very opinionated and voices them well! LOL! He knows what he wants! He is so funny. He makes me laugh.
Sometimes, he is having a hard time dealing with everything and we are working through lots of different situations. It's difficult to hear all his hurts, his pain, and his pent up feelings that have been inside for so long. I honestly think he will have to deal with all of this for the rest of his life. I sometimes feel like a complete failure. I did my best and that's all I can do. Overall, I guess he is doing well having so much to deal with and handling it pretty good. I know it could be worse and I'm so thankful that we are able to talk, laugh, cry, and get our feeling out. He is actually doing better than I thought he would. Our hearts are raw but you have to go back and replow up old ground and that is like rubbing salt into the wounds. It hurts but is necessary in order to plant seeds for happy memories in the future. I guess its better than burying our feelings and wallowing in self pity. We have to live, make new memories, and make a life for Spencer to enjoy. There is no time to crawl in a hole like I would probably want to do for a while. I HAVE to keep moving, breathing, putting one foot in front of the other. I have someone else that is depending on me and needs me more now than ever. He is such a sweetie and I pray for relief for him and for us.
There is so much I didn't write about during Nicholas' last two weeks. I'll fill in the gaps as I can. The support from FAmily was wonderful and much needed and appreciated beyond words. Volunteers came from Camp Sunshine and it was wonderful to see them and let them see Nicholas. Nicholas didn't know they were there but they came and that was what mattered. God blessed us so much with their presence and support. It was a time of fellowship and love. My neighbor was so impressed that the FAmily was so close. She said, "Those kids are more like brothers and sisters!" I told her they were! They had grown up together at camp! It's FAmily that can cry, laugh, mourn, and have fellowship all at the same time. Thanks to Jacy, Jo, Krisstina, Keith, Kayla, Will, Nancy, Karla, Mary, Julia, Mike, Amanda, Jillian, Joel, and Andy. You all will never be forgotten. Thanks from the depths of our hearts.
Please remember Kayla Lackey's family in your prayers. Her father was hanging Christmas lights and fell from a ladder. He sustained head injuries and passed away yesterday. I know they feel the loss of his comfort but his presence will remain in their hearts forever.
Forever missing my baby....
Blessings and Bear Hugs,
Donna
Tuesday, November 30, 2010 12:09 AM CST
Hello,
Picking up where I left off last time.........
We spent the next two weeks, just pampering Nicholas and getting his pain level in control. Jeff's family was keeping us company and well fed. His mom brought food every day and everyone was just so precious to us. Neighbors and my family stayed with us from morning to night, helping us in numerous ways. Supplies, food, answering the phone, cleaning, sitting with Nicholas, and just being there. Nicholas continued to try to communicate with us and would get really frustrated when we couldn't understand him. Between all of us, we cound understand at least part of what he was saying. One day, he wanted the phone and was trying be my secretary, he told me, "Kayla called! Will's Mom!" Then, would drop back off to sleep! He would constantly ask, "What time is it?" We would tell him and he would place his hands together for "Please" let me get up! He would sit up and lean on me or his dad for a while and then drift off to sleep that way. Jeff would help us lift and turn him to change his diaper and bed. He was so heavy with fluid and in so much pain when we had to move him. Broke our hearts. Early in the first week, I told him to "Run to Jesus, that only He could ease his pain and give him peace and rest" and he just looked at me startled and then drifted off to sleep. The nurse said I would have to keep telling him that it was "ok to go" but I just couldn't. Three days later, he was in more pain, breathing differently, and very restless. Knowing I needed to tell him again, I told him that Jesus loved him very much and he shook his head "yes" to me. His PICC line stopped up and wouldn't work anymore! We had to find another way to get pain meds in him! We went with a medicine pump that works like an insulin pump. I had to push a needle into his belly, just under the skin and we gave the main pain med that way and the rest we gave via g-j tube. His g-j tube was hurting him so much that he would only let me give his meds unless he was totally out of it. I don't know if the spleen was pushing against it or not but it was bothering him. He turned jaundice on us and I knew the AML was attacking his liver. Then, as it was in his brain, he would talk out of his head and push me away. After he lost some of the fluid, we did get to hook him back up on Pedilyte. This eased my mind as we at least got some electrolytes into him. They stopped his feeds in the hosptial and he was too swollen for fluids. I know he was so thirsty and we would swab his mouth and he would suck the water out, giving him some relief. His kidney would only function once a day at that point. One day when he was more awake, he looked up at me, then looked above my head and his eyes followed something across the room. I'm sure it was an angel. He would push them away from him too. He fought up until the last 4 days then slept the rest of the time. Friday morning, I told him that I would take good care of Spencer and Dad and that we would meet him in a little while. I sang one verse of "Glorified Body" but couldn't remember the verse until I began singing it to him. We were alone that morning and I just knew I needed to sing..it went like this..."Created anew in the image of God, A body like HIS shall all glorious be, Then I'll sing and shout and never wear out, Praise God, I shall a new body some day."
That evening, he began breathing more different than ever. He would breathe, then get a little deeper breath for more air. This lasted for a little while. His right leg was colder than his left leg. He was lying more to his right side, I think he was more comfortable that way because of the spleen. About 5 am, his oxygen level begin to drop in the low 90s. He was coughing up a horrible colored phlegm and you could hear the fluid moving in his lungs as his breathing grew more shallow. We had to suction him almost continually. The fluid just flowed as his lungs filled up. Around 7, his Oxygen was in the 80s and dropped to 69 percent by 8:15. Around 8:20, he coughed out a bunch and slowly stopped breathing. I looked at his eyes and they opened, but I knew he was gone, the light was not there. He took three more deep breaths and the last one was at 8:25 am. My baby was carried to Heaven by God's angels. I had prayed to see the angels but I only saw a glimmering all around his bed during the week. I was looking at an angel the entire time. I held an angel, I cared for an angel for twelve years. I kissed and loved an angel. I thank God for the time He gave us with him. I miss my angel.
Forever missing my baby,
Donna
Wednesday, October 27, 2010 12:13 AM CDT
RIP Nicholas Evan Boggs
9-10-98 to 10-16-10
Hello,
I'm so sorry I haven't updated. Things happened really quick and I didn't have internet at home. On September 23rd, Nicholas was diagnosed with AML, an aggressive form of adult leukemia. His blasts at that point were at 8 percent. He was given weeks to months. The next week was just filled with fun. Nicholas even commented, "Mom, the teachers have gone crazy or something!" They played cards, games, watched movies, and gave no homework. He really enjoyed that week of school! LOL. Looking back, I'm so thankful they followed their hearts. On September 30, he had shortness of breath, fever, and his blasts were still at 8 percent. I decided to stay home with him on Fri. I'm so glad I did. I cut his hair and knew it would be the last time. I just felt it. Changed his trach, dressed his PICC line, and the nurse Becky gave him his bath. He was getting dressed and his mic-key button balloon burst. He panicked! He had awakened with a fever and I had a call in to St Judes and was waiting on a call from them. I called Cincinatti and Robin said they could change the button on Saturday but was worried with him so short of breath and a fever. I called St Judes back and they said to go on to Cinci. We headed to Cinci that evening and arrived just outside of Covenington with at flat tire! Thank God for Keith, Jo and Jacy's dad, he picked us up and took us to the ER. Jeff fixed the flat and met us later at the hospital. It was 12:30 am when we arrived at the hospital. They were going to admit him via the ER and check him out while we had his mickey button changed. They took an x-ray of his lungs and it showed "Vascular crowding" meaning the leukemia was already in his lungs. He had to have antibiotics in the ER before we were taken up to the room. At 5:30am October 2, we settled into a room on the bmt floor. His blasts had gone to 20 percent. Jeff went to sleep in the Tahoe for a while and I lay down in the room. Nicholas required suctioning several times and was getting worse. Jeff came back at 9:30 and burst into tears, he couldn't believe how fast Nicholas has worsened. It was heartbreaking. Nicholas was put on a pain pump and he would take his little hand and feel for the button to push. I'd hand it to him and he would slap it with his wrist and then dramatically sigh and "Wheeeewwww!" He temp kept getting higher. He began to urinate less and less as the day wore on. As his body was fighting the cancer cells, the debris and toxins damaged the kidney as it tried to flush it all away. He went into kidney failure and was swelling up with fluid. As more and more pain meds were added to his regimen, he was comfortable. Saturday night, he asked to go home. Sunday, he was excited to be flying toward home as they routed us back to St. Judes. He knew he was flying but the pain meds made it impossible for him to enjoy the ride. We rode to the plane in an ambulance and then flew to the local airport in the Tri-Cities, then went to the hospital via another ambulance...bumpy rides! We just kept him comfortable with pain meds as the family gathered around him. Jeff drove home and then came up to the hospital to be with us. We arranged for the pain pump and meds to be at our house on Monday and then we were allowed to go home. Some of the drs and nurses that he had for 12 years came by to give us hugs. We arrived home around 4:15 pm.
More later.......
Blessings and Bear Hugs,
Forever missing my baby....
Donna
Tuesday, September 21, 2010 1:12 PM CDT
Hello,
Nicholas is in the hospital again! No. 6 for this year! He and John have a competition going I think! I think John has been in there longer though. Bless Racquell's heart! She is a trooper and takes such good care of him! She is my heroine! Nicholas is my hero! Sorry John!
Nicholas continued to have fevers and spiked Monday morning and we brought him on over to the clinic. He was so short of breath! They think it is viral right now. He is some better today. He is coughing up some junk but that isn't anything new. He is still nauseated and vomited last night and again this morning. He has been sick since his noon dose of meds too. I'm exhausted to say the least but I did get rested up on the weekend. I should have known it was for another round. I slept two hours while Ms Becky was with him and then slept all night and Sunday night too. Just up a couple of times during the night suctioning Nic. He is hurting again in his left shoulder and left side like last time. I've come to the conclusion that he has pulled a muscle from straining so hard. Bless his heart. He will breathe or move and cry out in pain. He was droopy Sunday and thought I was going to have to come during the night but he didn't spike until mid-morning. He is just a sweet heart but with an attitude and a half! He just speaks his mind and lets the chips fall where they may! I actually felt sorry for the dr...he had broken down and cried during the morning so frustrated that he is staying so sick and I think he let it all out on her! He asked, "When are you going to find out what is wrong with me?" and if you don't, "What excuse are you going to tell me?" Fiesty little booger! But he was serious, not a teasing bone in his body! I burst out laughing! I thought it was hilarious but did have to shush him! She said, "I can tell you are tired of being here and probably your mom is too!" The drs here are asking me about when they are going to check his bone marrow again. They aren't. His white count went high but has come down to 8k!! ANC was 7500 yesterday! HGB is still 12 and Platelets are 27k...so transfusions as of yet and that makes....3 months again since he has been transfused!! PTL! They wanted to put him on a steroid but I couldn't bring myself to let them. I just couldn't stand it when he went into renal failure last time because he is so sensitive to them. It's heartbreaking enough without adding on to his problems.
Keep praying for him and for us as well. It's hard on Spencer and Dad too.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, September 17, 2010 12:12 AM CDT
Hello,
We took Nicholas back to St Judes yesterday. He still had his rash on feet and legs and on closer examination, I could tell it was all over his body and getting more visible on his face. They gave him his anti-allergic meds for the IVIG infusion and it helps his rash! Killed two birds with one stone that time! He was so pale afterwards! He did get his flu shot while we were there cause they've already had flu cases this year! Last night his face turned rosy red but his temp didn't spike. His feet were cold but his body was warm. Must be the flu shot causing all these other symptoms. They did a sputum culture yesterday and it was positive in 5-6 hours! I knew something would grow. We finally got all his antibiotics in and put him back on Zyvox again! We should know something today about the bug being IDd and what it is sensitive to. I hope and pray they put him on an antibiotic that will KILL the bugs, not just hamper them! It's driving me crazy! He is such a sweetie pie.
So far this morning, he hasn't even had any nausea! No vomiting, no anything except a low grade temp again! I'm wondering if the IVIG has helped in more ways than one! Maybe helped him clear up some fluid in his ears and his cold symptoms thus helping the nausea! Nicholas is such a mystery anyway!
I found him a little orange and black bat named Midnight with large black eyes that was totally adorable! He loved it! Midnight was the one that really helped him through his shot yesterday! He had to sing him to sleep on the way home and it was hilarious! He loves Midnight! He would just hold it and pet on it! I'm glad he liked him. He now has two stuffed bats! One is a fruit bat that is pretty big and now he has a baby one!
Keep praying for John, Alicia, BJ, and all the ones in bmt. Pray for Nicholas as he deals with this continued sickness, he is getting so depressed. He does need some relief.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, September 14, 2010 6:46 AM CDT
Hello,
Nicholas continues to have a low grade temp..yesterdays was 100d most of the day. He wasn't vomiting just nauseated a couple of times. He has a rash on his feet and legs that is coming and going. I didn't give his allergy meds on Sunday and he broke back out again! What on earth is he allergic too? Is that the cause of his low grade temps? His white count is up and he is def fighting something. He complained over the weekend of being sore all over. He has been hurting in his back again too. No clue what is going on with that. He was vomiting and it began hurting him in his lower back. He is a mystery that is for sure. He has had a wonderful birthday! He loves surprises and got more yesterday evening! He just smiles when I make a big deal out of it! I told him that he was being spoiled and he smiled and said, "Just like usual!" Too funny!
Spencer is still growing like a weed! He is doing pretty good overall! He is just so full of life and always bebopping here and there. He has his moments but I can see a huge difference in him. He is such a sweetie!
NICU Memories continue....After I visited Nicholas in the NICU, I went back to my room and actually prayed every waking moment all night long. The next morning, I was in the shower and just broke down and prayed my heart out, begging Him to just let Nicholas live. Jeff reached in, placed his hand on my shoulder, and prayed with me. We were heart broken. By the next day, the bleeding had totally stopped, he was not losing anymore via the drain bag. I knew then that God had answered our prayers. My heart was full of hope from that moment on. It didn't matter what else was wrong or they were going to find out that was wrong, I knew everything would be ok. As he improved, they took him off the ventilator and gradually all the wires were gone as well, the beeps and puffs slowly disappeared. There were huge scars on his belly and back from the surgery. They had to remove a rib in order to repair the T-E fistula and that is where the drian tube was and has left a deep scar there. His scar is from his shoulder blade all the way around under his arm toward the front of his chest, stopping on the side just shy of being in front. As Nicholas continued to improve, I finally got to hold him. Some of the tubes were still in him and he still had IVs but it didn't matter, my heart felt like it would burst inside me! The joy ran down my face as everything seemed to finally fall in place. My empty arms were finally full of the most precious thing I'd ever held in my life. A pure bundle of joy, a precious gift from the Lord, actually a double gift, the baby and his restored life as well.
I realized that faith was asking God for our hearts desire and totally depending on HIM! He knows our hearts and every thought that runs through our head but He wants us to fully depend on Him and ASK! I've asked a million things since that day and have always found HIM to be faithful, never failing to give comfort on my impossible requests.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, September 10, 2010 10:45 AM CDT
Hello,
On September 10, 1998, Jeff and I went to my OB/GYN appointment. They hooked me up to a monitor and I would have a contraction and your heart rate would bottom out. Dr Block came in and I took one look at his face and knew you were in trouble. He wanted me to go on to the hospital and get prepped to have you. I wanted to have you by a natural child birth. They hooked me up at the hospital with Dad by my side. They kept turning me from one side to the other to see which way was best for you. They broke my water and that’s when we found the meconium. About that time your heart rate went down again and they sent me to OR to have an emergency c-section. They gave me a spinal block and put me on the table. They draped everything off and I couldn’t see what was happening. Dad could see over the draped material but I couldn’t! Dad was sitting right by my side and holding my hand. I didn’t tell anyone but I could see Dr Block working on me but couldn’t see clearly enough in the reflection of the big lights over me! I kept asking if I could watch what was happening! Dr Block laughed at me! After you were born, they whisked you off to another table to work on you. After a few moments , I heard your first cry and it sent a direct link to my heart! I kept asking Dad if you were ok. He said he couldn’t see you clearly but saw a head of black hair. After they cleaned you up and wrapped you in warm blankets, they brought you to me but wouldn’t let me hold you. You had on a little pink and blue striped hat to keep you warm. I saw the sweetest little round face peeking out and solid black hair covered what I could see of your head! You were beautiful! I fell in love all over again and thought my heart would burst. I had to lay flat of my back forever because I was to numb to move. They always over-medicate me or I’m just sensitive to the meds. Dad got to go up to the NICU to see you but I didn’t get to. I slept through most of the evening and night. The next morning, the NICU doctors came in to tell us that there were some problems. They couldn’t get a tube down to your stomach and that’s when they discovered that your esophagus wasn’t connected to your stomach. The esophagus went from your windpipe down into your stomach! This is known as a T-E fistula. The doctor stated that they were going to do a chromosome study to see if something showed up there and if it did, then they wouldn’t do surgery to correct the esophagus!! I was so naïve! I couldn’t believe my ears! It occurred to me later the significance of that statement and it made my blood boil! I was furious! Then, we were visited by the surgeon, Dr. Moynihan and she was so nice and caring. She explained everything to us. Evidently the chromosome test was ok since they were going to repair your T-E Fistula!! We never heard definitely! They scheduled the surgery for the morning of Sept 11. It wasn’t until 10:30 pm on Sept 11, that I really got to see you. When I went in, the nurse was crying! You were lying in a little bassinet in the NICU with a million tubes coming out of you. Your face was blood red, blood was being transfused into you and a drain tube was beside you with half a bag of blood that was coming out of you. Monitors were beeping showing oxygen level, heart rate, respiratory rate, and your blood pressure was constantly being monitored. You were on a ventilator with tubes coming out of your mouth and a machine was breathing for you. You were trying to cry but there was no sound. Tubes were coming out of your belly button too. You had ivs coming out of your hand. Everywhere I looked there was something attached to you in some form or another. There was no place to kiss you except your sweet precious feet. I kissed your feet and you would curl your toes around my upper lip! I was thrilled to see your hand and little fingers. They didn’t show up on the sonograms that I saw even though the doctors said that you had web fingers. I was tickled pink that you had hands. It didn’t matter that the thumbs weren’t there. You had hands! AND you’ve been a handful ever since! We love you baby and want only the best for you. Happy 12th Birthday!
Birthday Blessings and Bear Hugs,
Donna
Tuesday, September 7, 2010 12:03 AM CDT
My baby will turn 12 on Friday! I can't believe it!
He got out of the hospital on Thurs. Bronchial Pneumonia was one of his dx! He had two bugs growing in his lung sputum and one in his urine. He is still nauseated and vomiting at various times. I'm just crushed that he is still so sick. We changed formulas to a soy...non-milk based formula but that didn't help one little bit! I guess we will change back....the soy based has to be mixed and the other is easier so we'll stick with easy at the moment. I so hoped that the soy based would be the miracle we needed but no....help. Nicholas has prayed and prayed and getting really frustrated that God isn't hearing his prayers. He begged God for mercy..that he couldn't stand this anymore. He asked for just 5 minutes of relief! I cried along with him. He is such a trooper. "God, whatever I've done wrong, I'll never do it again!" Breaks my heart that he thinks he has done something wrong! I've reassured him that God doesn't work like that to innocent little boys that radiate pure love! He is so sweet and precious! I can't stand to see him like this! I cry at the drop of a pin! How much more can my baby stand? He just gets so violently sick at his stomach! I asked the ENT at Cinci to look at the ct scan to see if anything is obviously wrong with his ears that may cause the nausea. I'll post if I hear anything.
Sunday was the Davis memorial. Mamaw knew several people and called them by name and had a pretty good day. She sang two songs by heart too! She is just the sweetest little women in the world. I love my mom and dad! God has truly blessed us beyond measure with the best parents ever! Spencer ended up spending the night with them! Mamaw and Papaw really enjoyed his visit! He keeps Mamaw laughing and she keeps saying he is so full of life! I think it is a good stimulate for her!
Nicholas had a good day yesterday but was just so droopy. He is still running a low grade temp every evening too. We got to go to Mamaws and he and Spencer played with his minature horse, Blackjack! We brushed him and the boys lead him around everywhere! Spencer LOVES him so much. Nicholas does too but was just tired and out of breath a lot. He would sit down every chance he got.
Please pray that he will get better and find some relief. His birthday is this Friday! He will be 12 years old and is so excited! I pray it is warm enough to take him out! I pray he will be able to enjoy his special day.
Keep praying for all the FAmilies.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, August 30, 2010 12:59 AM CDT
Hello,
Nicholas has been admitted to the hospital. I think it was too cool Thurs and Fri morning when we had to take him for tests! He became really congested on Sat and developed into laryngitis! Everytime he would cough he would throw up just about or become severely nauseated! Sat night he threw up three times but never had a high fever, just low grade, as usual! Sunday, he was droopy and vomited some too. I took him off his formula and put him on Pedialyte and that eased his nausea some. I kept checking his temp and at 5 am he spiked to 101.4! I packed and we came on to ST Judes! They have run several tests and nothing is showing up yet! X-rays, stool specimen from last week was ok and totally clear, they took several more specimens today from everywhere and checking him again from head to toe. It may be viral this time though. He will cough and then grab his head and just about cry! He said he needed some serious Tylenol! We had just given him some! He is really tired of being so sick and begged God to help him. He broke my heart. He said, "Whatever I did, I will never do again! I just can't take this anymore!" How on earth could he possibly think he had done something wrong and God was punishing him for it!? Love his little heart! Of course, I burst into tears as I'm pretty tired as well! I prayed for strength and God sent it when I needed it the most! I gave him breathing treatments every two hours last night! I'm getting really sleepy now! Had to go and buy some chocolate! LOL!
Keep all the FAmilies in your prayers.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, August 27, 2010 9:55 AM CDT
Hello,
Well his counts are still aboout the same.....didn't need any transfusions at all! Platelets were 35k, HGB was 12.5 and his ANC was 3445! That means 12 weeks w/o transfusions!! Wow! I didn't realize that it will soon be 3 months that he didn't need any.........thought it was 2! Goodness gracious! PTL! He has been really nauseated and sometimes throws up twice a day now! I began giving him Prevacid at bedtime too. I hope and pray that works! I cannnot stand to see him so sick. I look back at the first 4 years of his little life and he threw up with every feeding! I don't know how on earth we made it through those days. It unnerves me now with each episode. He told me Sunday that he would rather die than be this sick. Wednesday, he prayed and begged God to help him saying that he just can't stand it anymore. Broke my heart into a million pieces. He was nauseated all day yesterday but didn't throw up! They wanted to rule out a diseased gallbladder and the ultrasound was this morning. It seems to be working properly....nothing major showed up I don't think..no official word yet. He gave the tech a sticker from the pile that he had given him! It was so sweet! I told him I bet that was the first time he had been give a sticker and he said it was! He told Nicholas that he would keep it! Nicholas hugged him! He is so sweet and loving! He told the tech, "I'd say you didn't notice that I didn't have thumbs did you?", as he held up his hands. He hadn't! He kept the tech laughing! He wanted to know how long it would take, how many photos he would take and kept asking, "How many more to go?" "How long have we been in here?" I told him to just relax and it would be overwith soon. The tech told him 20-25 minutes! MISTAKE! He kept asking how many minutes had gone by so he could tell how much longer he would have to stay! Hilarious! He was so scared! Afterwards, he wanted to know how many pictures he took! He had to tell Nicholas what he was looking at every time he moved the ultrasound camera! It was funny! He apologized for being so jumpy! My sweet, sweet, precious baby.
Of course I had to explain what FA was and what all could happen with the disease! Education is the key! Every opportunity is taken to explain and raise awareness! Especially if they ask twice what disease he has! He found out more than he wanted too I'm sure but with the personality that Nicholas has, everyone is curious! He told Nicholas that he sure was smart! We knew that already!
Spencer is still growing like a weed! He has reached his 54" and still growing! He is slim as a racer! He really likes school this year so far. So far he hasn't had much homework and will not do any at school but likes to do it at home! Go figure! I think he has grown up so much this year. I do believe he is growing up too fast! He will be 10 years old in Nov! Unbelievable!
Keep praying for John, BJ, Carter, and all the ones in bmt or in the hospital! Rem all teh caretakers as well.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, August 23, 2010 8:48 AM CDT
Hello,
Well, the ct scan was ok so far...sending the info to Cinci to be compared against a more recent ct scan since the last one there was in 2001. He dropped a lot of fluids on Wed before we went to St Judes and I think that helped him. He is still vomiting...twice yesterday and I'm just so aggravated. I went to bed after the 4 am throw up and was just shaking like a leaf inside. I'm so tired of him being sick. Yesterday after he threw up he said he'd rather be dead than so sick. Broke my heart. He really drooped around all weekend, even at the family reunion!! He coughed up blood yesterday and seemed really dry too. I think it was where he was so dry that he coughed up the blood. He did this morning too, a tinge anyway, nothing major.
We went down to Sissy Bear's yesterday evening. Rita had an allergic reaction to something she had eaten and her blood pressure was so high. She ended up in the ER and is now ok. Keep her in your prayers.
Keep praying for all the FAmilies too.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, August 17, 2010 12:52 AM CDT
Hello,
Ok, so far so so.....same ole same old stuff! Low grade temps and vomiting and the nausea.....then he told me he felt sloshy in his head and it hurts if he shakes it or jumps! DING! DING! DING! I immediately scheduled a ct scan of his shunt for next week but think we may have to do it locally and send report to Cinci. So far as I know now its scheduled for JC on Thurs of this week. If there is pressure on his brain, then all the symptoms would make more sense to me. He has been emotional, irritable, plus the pain and nausea and vomiting. Goodness, I mentioned this back in June!!! Then a couple of weeks ago, he couldn't rem when his birthday was and that threw up a red flag for sure.....I think this has been a long ongoing process. I think the steroids have hurt him in more ways than one! In my opinion, the fluid from the steroids have lingered much too long and is no longer welcome! I think its gradually leaving but not before causing some trouble! I'm just sick of seeing my baby sick!
Yesterday was the first day of school of Nicholas! Spencer's was on the 12th. They were both so excited! I messed up Nicholas' plans that I wasn't aware of and he burst into tears. He had something planned for the teachers but I haven't a clue what it was and she was already in the house before he was ready and he was devastated. He dressed up for the first day too! That was something new for him to do...I think he was really excited. I told him he must have had a boring summer in order to be so happy that school had begun! LOL! Spencer loves school so far. He loves his teachers and gets to change rooms this year. Time has flown by that is for sure.
Please rem John Hanna in your prayers as he goes for treatments and also Paula another FAdult, BJ gets to go home shortly yippppeeee! Rem. Lori she has a hole in her heart and is having surgery in the near future. Another FAdult has passed away, please rem that family in your prayers. Ashlynn viewing is today so keep praying for that FAmily as well. Goodness... to many passing away....see why we work so hard to fundraise for a cure!?
Praying for miracles.
Blessings and Bear Hugs,
Donna
Tuesday, August 10, 2010 11:22 AM CDT
Hello,
We are mourning another death due to complications from a bmt for FA! Ashlynn, 6, passed away on Saturday. Please remember her FAmily in your prayers. Each death rocks the FAmily and we all reach out to each other. Shawna and Jim really need your prayers as they have just had a long road to travel and so many ups and downs. We pray for peace, strength, and courage for them. Ashlynn was tough and true to the FA norm, she beat lots of odds and recovered many times that they didn't think she would. Our hearts are with them. I can't even imagine....
Nicholas is still running a low grade temp almost daily. Its reached 100.3 weekly but not usually any higher and will go back down. He seems ok in other ways but has had some memory issues. We've noticed it several times but not continuous nor is it daily. No clue on that one either. He is a like a living puzzle, always changing, and yet still my sweet precious baby.
He told me last night, "I'm getting old enough to be my own boss!" LOL! This made me laugh! I know he has been a little on the down side emotionally so I'm going to have to get him out more! He tries so hard to be perfect. If I scold him the least little bit, he will pucker up! He is so tender hearted and wears his heart on his sleeve! Spencer has been so pesty and picks at him but then I realized that Nicholas was instigating some of it and told him to stop! Oh, he pouted and pouted and just about cried. Love his heart!
Well, as I was leaving yesterday morning for work, I ran over one of the kittens! I watched it die and it was horrible. I cried my heart out! It was like the dam broke and I def washed everything in me totally out! Then when I got to work and realized that Ashlynn had passed away, it was heartbreaking. I went home yesterday evening and didn't tell the boys of course what had happened but there were three kittens missing! I must have carried the other two off in the Tahoe. Jeff came home and said that he saw another one on the road dead about a mile from our house! Now, we only have one at the house and don't know where the other one is. Jeff had told us that we need to get rid of them this week but didn't plan for it this way! We were trying to find them homes.. :..o(
John Hanna update: Good news...chemo is working and the tumor is shrinking....he got his trach in yesterday. He is still in ICU for a few days but will get into a room shortly. He has a really positive attitude and has a wonderful wife and mom to support him! Racquell is just the best!
Don't stop praying! God does answer prayer! Nicholas didn't have to have any transfusions on Thursday either! 2 months now that he didn't HAVE to have any! God is so good! PTL!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, August 6, 2010 7:42 AM CDT
Hello,
Nicholas' counts were: Platelets 39k, Hgb was 12, and ANC was 4220! Yes! No transfusions since June 17 but actually not needed since June 3 so.....I'm saying two months without transfusions! PTL! I'm so thankful for this reprieve. I think I going to do cbc locally for a while and that will save me several trips I hope! Thanking God for his counts going up and staying up! It is truly a miracle!
Please pray for John Hanna. His tumor in his throat has blocked the airway and he is now on a ventilator. They are trying to find a place to put a trach in. Pray for inspiration for the DRs. The cancer has spread to the lymph nodes too but we know beyond a shadow of a doubt that With God ALL things are possible and I know HE answers prayer. The chemo is like brakes being applied to a train....it keeps moving or growing for a short time afterwards but will slow down and then will stop. Praying the tumor will begin to die and John will recover. Hezekiah was given 15 extra years! Isa:38:5: Go, and say to Hezekiah, Thus saith the LORD, the God of David thy father, I have heard thy prayer, I have seen thy tears: behold, I will add unto thy days fifteen years.
You have to ask in order to receive!
M't:6:33: But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you.
M't:7:7: Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you:
M't:7:8: For every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened.
Yes, Nicholas asked and he has received! AMEN! God is good all the time and all the time God is good.
There are others that really need your prayers too. Please rem all the FAmilies.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, August 2, 2010 6:56 AM CDT
Hello,
August 1st, Pink in honor of an FAngel, Jessica McDowell. Our hearts go out to this FAmily and all the ones that have lost loved ones. Sometimes I feel so exhausted and tired of Nicholas suffering so much but I'm thankful that I still have him with us. My heart breaks for the ones that don't have their children to hold and kiss their sweet faces but I know they can be with them one of these days in Heaven. The promise that we'll see them again is the only lifeline in this sea of life. God Bless the FAmilies.
Nicholas is doing ok, not absolutely wonderful but so-so. He is still running a low grade temp and his secretions were really dark and blood tinged. I think it was just the change in atmosphere. He sounded congested a little bit this morning.
We did get a small break and went to Watauga Lake for a couple of days. Nicholas did get to be Captain for a while on a pontoon boat as well as Spencer and fished some too. We really enjoyed it. Saturday it poured the rain but that was ok too. The afternoon cleared up and we hit the beach area. Nicholas kept looking for oyster/clam shells to put his pearl in! LOL! We found some and he was happy. Spencer stayed in the water the entire time. He is a little water dog. Jeff fished some but wasn't successful. I waded amd took photos of course! We took them to Chuck E. Cheese's on the way home and they really enjoyed that. I hold my breath and washed Nicholas' hands really well afterwards. It wasn't too crowded though. I'm glad they enjoyed their weekend. Now, I need a vacation.
Please rem all the FAmilies in your prayers. Every day is a challenge for some of us, either fighting the effects of the illness or fighting the side effects of the meds, some struggling for life, and some celebrating the short life of their loved ones.
Rem Mamaw and Papaw S as well. Papaw turned 83 yesterday!! Happy B day Papaw! You are our hero, our pillar of faith, tower of strength, and foundation of love! We thank you for your walk with God and the example you've been to us through out the years. No matter what happens, we know you are praying for us. Thanks for being a faithful prayer warrior and stealing away to your garage several times a day. We love you more than words can say.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, July 26, 2010 9:33 AM CDT
Hello,
Nicholas has been fighting something..not sure what but his temp went to 100.3d over the weekend and we barely stayed out of the hospital. He seemed better yesterday so hopefully he is over the most of it. He did throw up this morning and was just really feeling bad. He was a little grumpy bear and just not happy with me at all! He actually wouldn't let me out of his sight or out of hand reaching length most of Saturday. We did enjoy Spencer coming home Sat eve and really had missed the little booger! He just laughed and lauged when he came in and hugged us all. So sweet and precious to have the house full of laughing and playing voices again. He really enjoyed his stay with his cousin Jack and wants to go back for his birthday! Hmmm, not sure on that one..
Please rem Libbey's famiy. Their dad passed away last night, Eugene Hilman. Pray for peace and strength for them.
Rem all the FAmilies in your prayers as well.
We will be wearing PINK on AUG 1st in honor of Jessica McDowell, UK for another FAmily. Join us and send me a photo to pass on to them....
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, July 21, 2010 2:27 PM CDT
Hello,
Nicholas had been doing pretty good but seems to be more and more nauseated. We are still giving him the allergy medicine and he was vomiting this morning! He ran a low grade temp too. I'm not sure exactly what is going on but we are going back to St Judes tomorrow and getting bloodwork done. They will do cultures of every sort and hopefully, we'll find out something.
Spencer is in Arkansas and I feel like one arm is missing! I can't believe he went and have missed him so much! Nothing is the same without him home with us! Nicholas and Dad have missed him too! No one bebopping anywhere! Too quiet, less hugs, and kisses and no extra sweet smiles! No giggles or laughs! We MISS YOU Bub! I'm sure he is having the time of his life with Jack! Sissy Bear will have to give him some attention so he won't be too jealous! LOL!
Please rem John Hanna, Ashlynn, Carter, and all the ones in the hospitals. Pray for Mamaw and Papaw S. too!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, July 16, 2010 8:11 AM CDT
Hello,
Nicholas is doing pretty good. We didn't give him his allergy meds for a couple of days and guess what happened! He began itching on his back again, which I just figured out that had stopped while on his medicine! LOL! Then, the next morning he was nauseated and vomited twice! ARG! He needs it daily evidently! Don't know what it is doing but it is doing something and for that we are grateful!!! It takes a couple of days to get back in his system to help him. His nose was so stopped up yesterday that he couldn't talk on the phone. The medicine must be breaking things up and causing his nose to stop up! It hadn't been running or any symptom at all except a sneeze or two. I'm so thankful that I stumbled across something that is helping him. Thinking back on how long he has suffered breaks my heart! He is always itchy on his back but I thought it was all the scars from previous surgeries but evidently not! He has been nauseated 10.5 years out of 11! Very few days of relief at all in his entire life. Why Oh Why didn't we realize it was an allergy of some type! He just didn't have any of the usual continual allergy symptoms or seasonal ones either! I think maybe the transfusions have disquised them because he was getting hydrocortisone before each one! They think maybe his body isn't producing any normal hydrocortisone and gave him a daily dose while in Cinci anyway! Also, he was a little low on Vit D and gave him a weekly dose. His Ferritin was still over 1000 and normal is 15 so he is still on his EXJADE for that.
We aren't getting bloodwork this week. I told them I would be back next month and the nurse practioner's eyes kept getting bigger. I laughed and told her I was getting gutsy! She said, "You ARE!" I will probably get them every two weeks to be on the safe side. I can tell when his counts are extremely low. He does seem short of breath but that could be from the allergies too. I wonder if any others in the FAmily have the same symptoms as Nic! I'll have to post a question to the group and find out. Jeff has seasonal allergies and Nic may have inherited them from him too.
Nic turned down our bed covers last night and kissed our pillows before he went to bed! How precious was that? He then threw one to Bub's bed! I asked him why he did that and he hugged himself and said "Hmmmmm, hmmmmm, hmmmmm, lovins!" He is so sweet and precious!
Keep John Hanna in your prayers today as he begins his Erbitux chemo today. As I posted on FB, pray it will melt the tumor down and kill every cell. Pray for all the FAmilies.
Caddy For a Cure is offering free t-shirts to all the FAmilies...email me if you want some for the entire family.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, July 12, 2010 11:11 AM CDT
Hello,
We had a wonderful weekend for the most part. Nicholas continues to do well with the allergy medicine. We had bloodwork on Thurs and his platelets were up to 57k, HGB was 11.2, and everything else was ok except for his ferritin level which was 1152! He did not hav eto have any transfusions at all! No platelets since June 17! and he only received those because of a procedure! Thank God for answered prayers. He always delivers right on time. I just wish Nicholas was perkier. He seems ok but is a little on the droopy side. It may be the allergy medicine. If it is....that's ok! I will take droopy over vomiting any day!
Last night, he complained of leg and feet pain but after he lay down, he didn't need any meds for it. I don't want him in pain but try not to give him meds whenever possible. He wasn't very active so I know it wasn't due to excersize. It does worry me. I wish there was a cure for FA. I wish cancer wasn't so prevalent. Cancer will always be in the back of the mind as he gets older. He wonders all the time what he will do when he is older, how many children he will have, who God has in mind for him as a mate, where he will live, and if mom can go to college with him! He is a little worry wart. Breaks my heart into a million pieces but I just try to smile and encourage him. He is such a precious soul.
I cannot believe how the boys are growing! Nicholas will soon be 12 yrs old! Spencer will be 10! Where has time flown too? Spencer is such a sweetheart. Rotten but sweet! He listens to everything! He is definitely all ears!
We attended Lick Fork FWB VBS last week and they really enjoyed it. I will post photos on FB. It is no wonder I'm exhausted.
Mamaw S. was in the hospital overnight and when Sharon called to tell me....I just sat there in a numb state forever. She is having blood pressure issues, heart beating too slow, then running away with her. Bp too low then spiking too high, even in her sleep. I could tell the biggest difference in her since we had been gone. She is still the sweetest mom on earth and so precious but its breaking my heart into pieces. Papaw is holding up but I can tell its taking its toll on him. He is an anchor in the storm that is for sure.
I'm missing Camp Sunshine. I was glad to get to camp but I just seem out of place for some reason. I miss it now that we are home again. I loved seeing everyone and being with FAmily. They are truly the only ones in the world that really understand every aspect of FA and what we as parents deal with on a minute by minute basis. I miss all the wonderful volunteers and sunshine love.
Please rem John Hanna as he is getting ready for radiation and chemo to fight the hardest battle in FA. Also, BJ is back in the hospital. Rem Ashlynn's family as they say her lungs aren't healing and Shawna as they ship her home to be with her family. I know it was so hard on her being in Cinci alone. Rem all the FAmilies fighting for their children.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, July 6, 2010 8:02 AM CDT
Hello,
Everyone is well at the moment! PTL! Nicholas seems to be ok as long as he has allergy meds in him! He does throw up if he doesn't have his medicine in him. I beieve the antihistimine is actually drying up his ears some and in turn he is less nauseated. He keeps saying he is tired and we will be going to JC this week for blood work.
We didn't go by Cinci on the way up or back. We didn't get bloodwork while at camp nor did we participate in any trials, clinics, or donate any tissue. I think we have had enough medical stuff to last us all year and just didn't do anything remotely related to tests! Then, Nicholas piped up and asked, "Mom, why aren't we getting the my cheeks brushed?"!! He actually missed it! LOL!
Looking back over the camp photos, Nicholas wasn't up to his full potential but was well enough to enjoy camp! As long as he got to sleep in, he felt pretty good. He really pushes himself all the time.
We are going to Lick Fork VBS this week and he had to walk up a little incline and that wore him out! He was so out of breath! He loved it though and wants to continue going every night! Spencer is participating so much more now. I'm so proud of him. He held back some last night but did join in with the group.
Spencer did really well at Camp this year too. This is the first year he really participated in his group skit! He went up on stage and sang with the volunteers too! He told me that he cried too. He was so busy playing that he didn't even know we existed most of the time! I'm glad he enjoyed it. He enjoyed the camp out too.
Please remember BJ, John as he travels to NY for tests, Ashlynn, Elias, and all the ones in bmt. Also, pray for wisdom for the drs.
Miracle, Blessings, and Bear Hugs,
Donna
Saturday, June 26, 2010 1:39 PM CDT
Hello,
We are at CAMP SUNSHINE! Yes, we made it and all is well. On a whim, I gave Nicholas a dose of allergy medicine and he woke up and said, "Mom! I've made it!" My thoughts were that an antihistamine would dry up any fluid in his ears and hopefully help his nausea! It WORKED!!!! I'm so happy it did! I couldn't believe it and neither can the drs! I'm just so relieved that he got some relief. He has been fine ever since with a daily dose of his miracle med. I missed one night and could tell it the next morning. On the way here, he didn't even want to stop and eat! It was so funny. He would get fussy and pout.
The night before we arrived in Maine, he just wanted to sleep in the Tahoe so we could just travel straight to camp! It was hilarious. We went to visit Kristen Young's family for a while and he was a little on the shy side. Kristen saw us and screamed!! We had totally shocked them! It was fun to surprise everyone! It is very touching to be at camp and the warm welcome. Everyone was just so happy to see us! wink! wink!...we to see Nicholas!!! LOL!
Spencer is having a ball and just having fun. He wanted to watch over Nicholas and I told him he needed to not worry about Nicholas but to just have fun himself. He has been so busy having fun that he hasn't even helped Joel with the trash much at all! He usually helps non-stop! I'm happy that he is having fun.
I'm so thankful that they are having fun. I'm so thankful that we found a solution to enable us to come to camp. Lots of new families here this year and lots of old ones are here as well. Its such a blessing to be with FAmily.
More Sunshine news later,
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, June 16, 2010 6:10 PM CDT
Hello,
I'm updating! Ok, every orphis and organ has been checked, tested, biopsied, rechecked, retested, inside and out, upside down and sideways....literally!! Everything is negative so far! All clear as far as testing goes. They took him off antibiotics today and we'll see if he spikes anymore temps. If he doesn't, then we go home tomorrow! He is back on his feedings at a very low rate and we will increase it every day. He may have to have TPN for a while as well. Not sure but hopefully, we can get him back to his regular feeding. I really think the clean out for the endoscopy really helped him in ways that we will never know about. The pain when he takes a deep breath has magically disappeared! Nah, I know everyone was praying and I know there is power in prayer! God works in mysterious ways. I really think he is on the mend! AMEN!
He has really been through the rye this week and its been a rollercoaster of emotions as well. He is petrified of going to sleep and would break down, crying and ask me why I was putting him through this! Broke my heart into a million pieces. I had to put him through the testing to find answers to make him well but so far there are no answers, really only more questions. He is making platelets on his own again! PTL! We didn't have a tx on Thurs of last week, his platelets went up to 40k. After the tx for the endoscopy his platelets went to 86 and were 74 today and his HGB is 9.2. Hopefully, we will continue this new trend! We'll keep you posted.
Pray for no fevers.
Miracles, Blessings, and Bear Hugs,
Donna
Saturday, June 12, 2010 9:54 AM CDT
Hello,
Ok, were to begin. On Fri of last week, Nicholas' face flushed up and I could tell he just wasn't feeling any better at all. Sat, his face did the same thing and temp went gradually up to 100d. I knew we were headed for the hospital. We decided to come on to Cincinnati for their opinion. He had continued to throw up and have loose stools as well. I spoke to Dr Davies and she wanted us to go to the ER. They took xrays and found that he had developed Pneumatosis in his colon meaning there is air in the lining of the colon. This can be caused by an infection. All tests on his stool and ct scan were all negative. Nothing anywhere showed up but in his trach, he grew his normal! It just amazes me that not one of his numerous studies have what the culprit really is! We may never know. Here they wanted to take him off his antibiotics and I said ok, I'd rather do it while in the hospital than when we go home because he will spike again. Sure enough, I'm not a false prophetess! LOL! He was off his antibiotics for a day and a half and he spiked to 100.6d!! They did cultures and put him on Meropenem another broad spectrum antibiotic. He continues to have pain in his left side when he takes a deep breath, sneezes, or coughs and even refused to allow himself to sneeze for over a week! That was hilarious but amazing! He hurt so bad the other night he just couldn't get comfortable anyway he lay. We gave him Tylenol and it eased the pain. I am beginning to see a difference when he is on antibiotics, the pain is less but never quite goes completely away. My conclusions are it is an infection of some type in his colon or lungs that just isn't showing up in any of the tests. They have tested everything, pancreas, liver, kidneys, gallbladder, and lungs are clear for now! But I know there is something wrong somewhere that we are masking with the antibiotics. We can't afford to not give them to him though. Don't want it to get out of hand. We'll just have to see what today's xrays show. If his bowels are better, we will begin his feeds again. He has been on TPN since Sunday to let his gut rest. He is still nauseated at times but not vomiting. Hs stools still look like BBQ...no joke! I know, TMI!! LOL! He is perkier overall. I can tell he is getting back to his little bossy self but I don't think that really ever stopped!! I guess he is smiling a little more with his demands and that makes it more bearable! He is so scared that we are going to have to change his mic-key button and if that is what is causing these issues, we will. He just dreads it so bad. He is petrified to being put to sleep but we may to do an endoscopy to find out what is really wrong if the xrays don't show anything getting better. Just continue to pray that we get this resolved totally. I want him better!...fully recovered...totally well. Oh I forgot some good news! Guess what his counts are doing???? Yep, you guessed it! His platelets are hanging at 30k!!!!!! His Hgb is hanging at 9 and his ANC is around 2000 every day so far... I think his white count is climbing which is showing infection when his gets in the normal range...meaning I worry more! Ok, that was a long version but you asked for it!
I miss Dad and Bub! Bub caught lots of fish at the cub scout camp out last night! Super proud of him! He did really well on his SOLs too! 3 perfect scores!!! Awesome job Bub!
We need miracles, blessings, and Bear Hugs,
Donna
Sunday, June 6, 2010 10:39 AM CDT
Hello from Cincy!! Nicholas has a bowel infection and they are putting him on Flagyl again. That's all I know at this time.
Keep praying!
Wednesday, June 2, 2010 12:25 AM CDT
Hello,
Great weekend...except for the nausea, vomiting, and loose stools that continue to plaque my baby! I'm just at my wits end! I haven't a clue what is going on with him and why he is doing this. All tests are ok so far and all we lack is changing out the g-j tube! He will have a hissy fit if we have to do that! He is petrified of having it changed but will if we have too. He won't have a choice. He complains of being tired and at times will just lean against me if I'm within range. He loves experiments but just drooped through them the other night! He was running a low grade temp then and wasn't feeling good. He is doing that every evening for the most part. Low grade temp and then will perk up afterwards. I think he is pushing himself.
Nicholas saw a Nintendo that has a camera in it and now wants it so bad, the Nintendo DSI! I told him he had to earn it! He keeps asking me how much he has earned if he does something for me. He wore a blister on his finger yesterday hammering and when he went in for a bandaid, he said, "I'm going back to hammer more, I'm not letting that stop me!" He didn't even think about getting paid at that time! LOL! He just keeps pushing himself. He seems to be ok, lungwise. He is doing pretty good about regaining his strength, just a little out of breath at times but no where near like he was!
Spencer's hand project brought in a total of $2121.10 including online donations! Thanks to all the ones that helped with this project! Ms Donna Sturgill's class at JW Adams won 1st place! The total there was $917, the high school was $155, the primary where Spencer goes was $201! The Pizza Hut was $75 and still selling! I'm so proud of him! This is above and beyond our Fun Day For FA!!!! Awesome Job Spencer! He is so pleased.
Keep praying for all the children in the hospital. BJ is now in transplant and needs your prayers.
Praying for miracles,
Blessings and Bear Hugs,
Donna
Friday, May 28, 2010 12:28 AM CDT
Hello,
Well, everything seems to be on the mend. Slowly but surely. Nicholas ran a low grade temp yesterday eve and just about threw up but didn't. He seems to be in a much better mood emotionally as well. I think he was just down from being in the hospital for so long and was getting depressed. He is still walking a little quirky but is doing better in that respect as well. He wanted to help in the garden last night but it was just too humid and he wilted. I had just gotten my feet really dirty and had to go in with him! I took him down to Sissy Bears for a while and that cheered him up a bit. After we came home, is when he began to run a low grade temp! I just wish we knew why he keeps doing that! It's so frustrating.
They started him on Nexum now and hopefully that will help his tummy issues. I think he has been on prevacid too long and no longer responding to it.
Spencer is officially finished with his SOL testing! He was relieved and so am I! I think they will have fun for the rest of the year! He has worked so hard and I guess he deserves a break! He is so excited to be helping with the fundraiser. I think he is a little disappointed that Sissy Bear is beating him but she brings the money in and says, "Here Boss!" That helps!!!
Please donate if you want to help with this fundraiser! Monday is the 31st and the last day of International FA Awareness Month!!! I'll take donations any time though!!
;0)
Still begging for miracles,
Blessings, and Bear Hugs,
Donna
Tuesday, May 25, 2010 8:43 AM CDT
Hello,
Ok.....I'll update! Nicholas continues to have pain with each deep breath. He will not sneeze or is majorly afraid too. He isn't eating either. He just isn't feeling well at all. He knows he is feeling pretty bad and says, "I'm so tired!" numerous times a day. He seems to be walking a little better. He just pushes himself. I wish I could make him better instantly. It breaks my heart to see him this way. I'm really tired as well but I know he feels so much worse than I. He is so sweet and snuggly. He wanted to go down t Sissy Bears but she wasn't home and he pouted all eve long! I found a plastic dragon sythe in the vehicle for him and that cheered him up. He and Spencer played for the rest of the evening! I love to listen to them playing! He has been wearing his Dracula costume around the house all weekend. Everyone gets a kick out of him wearing his dracula teeth!
He had to go to Daddy Bears to see a snake that he had killed and held it up for a photo! I'll try to upload it! It was yucky! He thought he was doing something! We just try to make him as happy as he can be! He does laugh at us being so silly. I told him last night if I had a brain I'd be dangerous! He said, "If you didn't have a brain, you'd be dangerous!" LOL!
WE only have 6 more days to donate for International FA Month! Ok, if you want to donate in Nicholas' honor, you still can use Paypal and send to me @ dboggs4newlife@yahoo.com or to info@fanconi.org or you can use a credit card on our Razoo page: http://www.razoo.com/story/I-Had-A-Hand-In-Helping-Fanconi-Anemia
If you want to sell the hands for Spencer's project, please let me know! Sunday school groups or a family would be wonderful too! We can sell the hands all year long! It will be an ongoing project. If you want to make a donation for hands, let me know its for the hands and we'll put your name on a hand with your donation amount! Thanks!
If you are a FAmily, please email me if you want to sell hands as a fundraiser project.
Keep praying for Nicholas and all the ones in bmt.
Miracles, Blessings, and Bear Hugs,
Donna
Saturday, May 22, 2010 12:43 AM CDT
Hello,
Nicholas continued to get sicker and nothing we did really stopped the vomiting or diarrhea. I brought him to the clinic on Wed and they admitted him. Put him on fluids and stopped his feeds to give his tummy a break. He had to have platelets on Wed and on Thurs began hurting in his left side with deep breaths. He had to episodes of intense pain. They did a ct scan on his intestines and chest and it was all ok. Thank God! But the puzzling fact is still there and so is the pain, what is causing him pain? The dr today said we may have to have a bone scan and look for a hairline fracture in his ribs to make sure. I don't know what is causing it but I want it to stop of course!
He get platelets and packed red cells today and then we are suppose to get to go home. It depends on how late it is all finished! I want to see my other babies! ;)
Keep praying for my baby!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, May 17, 2010 11:20 AM CDT
Here is the project that Spencer is doing. There is a photo of the hands on Facebook. Please buy a hand! Officially helping us are Ms Grimes at CPS, Sissy Bear at Pound Elem and High School, Pizza Hut of Coeburn and Wise, Ms McCoy at Sandlick Elem, Ms Mary Bear, Mike Strouth, and Miners Exchange Bank! Thanks for all the help! I'll keep you posted on how much he raises! He is so excited! Over 200 as of now!
I had a hand in a cure for FA
The first thing that you may ask is “What is F.A.?” The answer is simply Fanconi Anemia. This is the genetic disorder that people are born with that may cause serious and life-threatening health problems such as cancer. Many times, the patients face bone marrow failure along with many other health issues. These are health problems that require a lifetime of treatment, surgeries, bone marrow transplants, hospitalizations, and very specialized care.
My brother, Nicholas, was born with Fanconi Anemia and has several serious health issues from this genetic disorder. We are the sons of Jeff and Donna Boggs, living in the Lyons Fork area.
To learn more of Nicholas’ story, you may see his website on: www.caringbridge.org/va/nicholas.e.boggs/
I am selling the hands to help fund the research for a cure and better treatments for FA. All proceeds go to the Fanconi Anemia Research Fund (F.A.R.F.). F.A.R.F is a 501(c)(3) tax-exempt organization and has a very helpful website to learn more at: www.fanconi.org
Join Team Nicholas and have a hand in a cure, treatment, research, and to help other children like my brother. You may be the one!!
Thank You,
Spencer Boggs
Nicholas is still on antibiotics and not getting better. He was so nauseated, vomiting, and trotting to the bathroom all weekend. I think he will probably get c-diff from all the antibiotics. He is complaining with a sore throat too. I cried all the way to work this morning. He was just so droopy all weekend. I want my baby to feel good and enjoy life! He would lay his head on the table while trying to draw! If I was sitting down, he was in my lap! He ran low grade temp all weekend but nothing high yet. I'm just devestated. If he doesn't get well, we will not be able to go to camp this year. It's just too scary. I'm thankful for the reprieve we had a while back but this sickness has been a double whammy for all of us. His ANC is falling and his counts have bottomed out. Of course I know God can work miracles and my time just isn't HIS! Yes, I want more miracles! Totally selfish, I know but he's my baby! I want him feeling good and pranking, running without being so short of breath, playing without having a throw-up pan within reach, breathing without pain, rosey red cheeks not pale with dark circles around his eyes, normal sweet impish face that isn't puffy from steroids, and I'm asking for bone marrow restoration! I want my cake, icing, and be able to eat it too! I know the MAN that can give us all of this and I'm praying to HIM! My wants are so little compared to His ability to give....He has a storehouse FULL of blessings...just waiting for us to ask and I'm asking with my whole heart!
Spencer begins SOL testing tomorrow, please rem them all in your prayers as well.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, April 30, 2010 11:34 AM CDT
FUN DAY for F.A.!
The first thing that you may ask is,
"What is F.A.?"
The answer is Fanconi Anemia.
This is the genetic disorder that people are born with that may cause serious and life-threatening health problems. Many times, those with F.A. face bone marrow failure aong with many other health issues. These are health problems that require a lifetime of treatment, surgeries, bone marrow transplants, hospitalizations, and very specialized care.
F.A.R.F. is the Fanconi Anemia Research Foundation and a 501(c3) tax exempt organization. They have an informative website to learn more at:
www.fanconi.org
A very precious child from our region was born with Fanconi Anemia.
Eleven years old, Nicholas Evan Boggs from Coeburn has F.A. and all the serious health issues from this genetic disorder. Nicholas is the son of Jeff and Donna Boggs, living in the Lyons Fork area. He has a younger brother, Spencer.
To learn more of Nick's life story, you may see his website on:
www.caringbridge.org/va/nicholas.e.boggs/
Many of the friends of Nicholas Boggs have teamed-up with Fanconi Anemia Research Foundation, also known as F.A.R.F., to help raise funds for the research and treatments for patients that live with this life-threatening illness.
As our plan for a fund-raising event in HONOR of Nicholas Boggs, we have planned a family fun day event. The carnival-like event is planned for Saturday, May 8th at the Ringley Park and Depot Stage on Main Street in Coeburn, Virginia.
We will start the fun at 11:00AM until 3:00 that afternoon.
We have a great line-up of activities for children of all ages and their families.
We will have inflatable jumping, miniature horse and wagon rides, miniature train ride, hillbilly horseshoes, dunking tank, face-painting, balloons, corn-hole game, cotton candy, popcorn, prizes, and great food! The Wise County Sheriff's Department will be there for a child safety program to fingerprint children. The Center Stage Cloggers will perform at the Depot Stage along with prize drawings.
We need your help to make this event possible!
We are asking area businesses, groups, and individuals to join together with donations and contributions. We want to invite you to join us for Fun Day for F.A., to come be part to help find a cure, treatment, research, and to help children like Nicholas.
For more information, contact:
Jayne Sluss, (276)395-6497
Donna Boggs, 395-5712 or
Libbey Hale, 395-3108
Help us to HONOR Nicholas Boggs and his family and have a great day with your children and family in the park.
With sincere, heart-felt appreciation,
The friends of Nicholas
Thursday, April 29, 2010 1:29 PM CDT
Hello,
Nicholas' platelet count was down to 4k and his hgb was 7.3. He has already received his platelets and had a small reaction, a couple of hives popped out on his back. He is now getting red cells. He is sorta short of breath but blood pressure is ok. He just isn't bouncing back like I want but I know it will take time. He is slowly healing. His lungs sounded good according to the dr. They did another trach sputum culture because of his thick secrections. He is still on antibiotics and she wants to continue them for two more weeks. Hopefully, he will fully recover and his bone marrow return better than before. Help me pray for another miracle! I'm still processing and just cannot deal with everything right now. I look at his swollen face and it just breaks my heart in two!
We are still getting things lined out for the FUN DAY FOR FA! Volunteers are really needed. Bake Sale items are needed. Bring your children and have some fun! Pray it doesn't rain too! I tear up every time someone donates something! Everyone is so sweet and we appreciate it so much! Thanks to all that have already contributed. We LOVE all the FRIENDS OF NICHOLAS!
Keep praying!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, April 27, 2010 11:12 AM CDT
Hello,
We came home from the hospital on Fri, late of course! He was so happy to be home! He yelled, "We're home!" about three times when he saw the house! I was thrilled too! Spencer ran and jumped up in my arms and I was so happy to hold him again! I kissed him all day long on Sat as well! I kept saying, "I can kiss my baby any time I want to now!" I missed him so much! We missed Dad too! LOL! Spencer and Nicholas missed each other so much. It was a joy to see them run to each other and hug. Yes, I cried! It was so sweet and precious. Sat morning, Nicholas hollered at Bub the first thing! He wanted him in there with him! So precious! Dad grilled out for us on Sat and fixed all Nicholas' favs! It was sweet and Nicholas was all smiles. He got his popcorn Sat night and he was a happy camper! He missed all his favorite foods and kept saying, "Why don't they have popcorn here?" Dad spoiled him good! Nicholas just snuggled against him every chance he got! Pure sweetheart!
Nicholas is still struggling.... very weak and says he is tired all the time. He is still puffy, face is swollen due to steroids. He gets short of breath when he walks from one room to the other but it will take time to get back to his normal! He walks a little funny still but better than the first time. He is just a tough little cookie. I don't think we are hitting the nail on the head yet. My gut feeling is that we don't know what is wrong yet or that virus has done some major damage to his lungs and kidney. I think the steroids have effected his kidney. Solumedrol is hard on him..he is super sensitive to it! As soon as they stopped it, his kidney funtions came down, as well as his blood pressure. It has to be steroids! He is still on antibiotics for another 10 days but I think he will need them longer. It will take him a long time to heal from this episode.
Spencer is still doing pretty good so far! He seems to be more settled that we are home! I think I messed up his little father-son time but he is happy we are home! He is such a sweetie and a joy to be with. I love my babies so much. He is getting his campaign together for a fundraiser for Nicholas beginning May 1st! I can't wait to see how the schools will respond to this! I'm getting excited.
ON Sat, May 8th, we will be holding a "Fun Day for FA" at the park in Coeburn! Trying to get it all together with some help from lots of friends! Thanks for all the ones that are volunteering to help and donate food, time, money, and items! I'm exhausted and thank God for Libbey and Jayne for heading this for me. I appreciate you all so much! You are a true blessing to me! There will be pony rides, carnival booths, food, games, inflatables, Sugar Cane cloggers and lots more! Come and enjoy! IF you want to participate, please let me know! We def need volunteers and donations!
Rem my uncle in the hospital with a stroke, Charles Hall. Rem his wife Eleanor as she deals with this difficult time. Rem Mamaw and Papaw in your prayers too. Rem Nicholas and all of us as far as that goes! Sissy Bear too, as she helps take care of Mamaw and Joyel's mother who is also suffering from Alzheimer. Pray hard!
Miracles, Blessings, And Bear Hugs,
Donna
Monday, April 19, 2010 1:27 PM CDT
Hello,
Nicholas continues to have major issues with his blood pressure and now kidney function. His bp dropped too low last night and now is too high. They are still tapering the steroids off, took him off one of the bp meds and upping the other one to compensate for it. His face is a little on the puffy side right now. He only has one kidney and I hope and pray it doesn't fail him now. Yesterday he began getting really nauseated and I told them he was getting sick. Sure enough his trach culture came back possitive with a couple of bugs he is fighting. He is now back on antibiotics for that. He has had some funny moments and some sad moments. He broke down and bawled his little heart out yesterday...eveything was going wrong and he just wanted to go home.
One day the lunch lady got his meal really messed up and he asked, "Is this your first day on the job?" Embarrassed me to pieces! It was funny though. He has been playing fighting with the nurses and scaring them at times, squirting them with water, and aggravating them! So he is smiling at times, sad at times, and content at times. This morning he said, "Mom, What's happening to me? No popcorn, no cornbread, missing Dad and Bub, everything is going wrong!" He breaks my heart and makes me smile too. He wanted me to lay with him this morning and watch the sunrise! Yes, he was up at 6 am! Some sweet precious times too.
Please keep praying for all of us! We miss Dad and Bub! Mamaw, Papaw, and Sissy Bear came for a visit yesterday! Uncle Buck, Pat, Uncle Philemon and Phyllis came by one day and that helped break up the monotony! I think I'm beyond exhausted...whatever state that is!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, April 14, 2010 2:40 PM CDT
Hello,
There isn't any quick fix or answers...one ball bowls over the pins, they get stood back up and here comes another ball to knock them down and the sick bowling saga continues... He is really droopy today and short of breath. He is congested and I think its due to all the extra fluid he is retaining. They are putting him on another diuretic HCT that is a little easier than lasix. He was dropping fluids too fast on lasix. His lung ct is all clear for the most part, no pneumonias or any significant problems. We got back in the room and the coughing and wheezing began all over again... see why I'm confused??? He is definitely retaining fluid. His face is really puffy and if he sits in a chair, his feet will get puffy too. His heart rate dropped really low last night and the alarm beeped several times...his breathing rate has dropped to more normal levels...His blood pressure continues to remain too high. They did a heart echo and it was ok. He has really been tested from one end to the other. All cultures remain negative, so they have stopped the antibiotics. I asked if we could stop the steriods and the answer was, "Oh No!" They did reduce the dosage from 3 times a day to two times a day. He wants to go home and misses his dad and bub. He told me today in one breath that he wanted to go home and then said, "But I'm not quite ready yet!" He knows he is sick but not well enough to go home yet. He is such a sweetie. He just wanted me to spend time with him this morning doing a candy cane craft in honor of St Nick's visit yesterday. It is always a treat to see Santa! This warm weather is rough on him and having to wear the blue plastic fashionable gowns upon entering the room just about did him in! Nicholas loves his visits and listening to the stories he reads him. Nicholas laughed and lauged at me this morning. I would say something silly and he would tee hee! Which always ended up in a coughing fit but well worth it. He is my baby! I cannot believe he has been in the hospital for this long! Sunday will make 4 weeks and we were home 5 days out of that! Like the dr said, "Nicholas is just a mystery! He makes platelets and red cells when he isn't suppose too and we just cannot figure him out!" Yep, that's my baby! True to Nicholas fashion, he continues to be a sweet impish puzzle. They give him blood pressure medicine and what happens? His heart rate increases dramatically, turns beet red, breaks out in a sweat, and then chills! No blood pressure drop at all! True Nicholas reaction...just the opposite!
His highness is calling....gotta to do his bidding! Only Momma can do things for him! :0))
Keep praying for all the children in here as well. Rem Aunt Ova's family....I loved her so much!
Miracles, Blessings, and Bear Hugs,
Donna
Saturday, April 10, 2010 2:13 PM CDT
Hello,
Nicholas is back in PICU with all the same symptoms. I brought him to the clinic on Wed and they put him on antibiotics. Thurs he continued to worsen and needed oxygen but his sats kept dropping. I brought him in and he is still on 50 percent oxygen now as they are trying to wean him. He is very swollen and they gave him lasix which helped his breathing too. He is still breathing hard though. He is wanting to get well and go home as he heard that Ms Abby was on her way in! He is getting excited to see her! Any little thing really wears him out and overexerts him to the point of having to really work to breathe. He wants to get out of bed and we will try that this evening. He is feeling some better or he wouldn't want out of bed but I think he is just trying to push himself out of the PICU in order to go home asap! He told my neighbor that hopefully, he will go home tomorrow or the next day! I told him it would take a miracle..but as you know miracles do happen! LOL!
Remember Jeanette Mullins' family in your prayers. Not sure what the arrangements are yet. That is the third neighbor that has passed away since we were in the hospital the first time! I told Sissy Bear that we weren't coming back to the hospital again!
I passed by a vehicle and breathed in a snoot full of cig smoke and now am getting a major sinus infection. Please pray that it will go away quickly! Pray for Nicholas and all the other sick children here.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, April 5, 2010 11:55 AM CDT
Hello,
Nicholas' virus was Metapneumovirus, a virus with similiar symptoms as RSV! I can be fatal in elderly and immunosuppressed childen. It causes bronchiolitis and pneumonia. He did get to come home on Friday but is very slow walking. He settled so sore...almost everywhere! I couldn't touch him without an "OUCH!" Broke my heart to watch him walk around and try to hide eggs but he did it and kept pushing himself. He is such a trooper. I gave him Tylenol both nights to take the edge off his pain. He begged for it by 7 pm last night. He said his legs and feet were killing him. He walks in a shuffle with his feet pointed outward. He did get a little faster yesterday but paid for it in the end. I had to turn my face away several times to keep the dam from breaking! Lord help me if it breaks! He just tries so hard to do everything but would moan and groan when he did...even in his sleep. I thought it was due to his muscles just wasted away during the hospital stay but now, I don't know for sure. It could be the steroids. He had lots of Blood pressure problems in the hospital and they put him on two different meds. He came home on steroids and one b/p medicine that he hasn't had to have so far. Thank God!
Looking back...shouldn't have come home from Cinci! Hind sight is always 20/20. I've beat myself up a thousand times thinking the antibiotic would work but it just wasn't enough. We were barely home 12 hours and I had to take him to the hospital. Needless to say, I'm beyond exhausted as well as Nicholas. He has slept in the last two mornings. Today, he was up and at it early! He is doing good today, all smiles when he found out there was no school! LOL!
Now, Spencer's nose is pouring! He is nauseated and not eating. I hope and pray he isn't getting the hMPV! I gave him some allergy med and hoping that is what it is and will help. He just finished his antibiotics for strep! Whirlwind, here we go again!
Keep all the parents that have lost their children in your prayers. My heart aches for them and for the ones making major decisions about bmt or treatments.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, March 31, 2010 12:42 AM CDT
Hello,
Nicholas is still in the hospital but should be home on Fri! PTL! He still has a high blood pressure that just won't come back down. They are tapering him off of steriods and hopefully that will help too. He did fine yesterday on room air...sating at 95 percent most of the day. He isn't as junky today as yesterday so that means he is getting better! He is still pranking with the nurses. He has had a rough battle these two weeks that is for sure. I'm not sure I'll even go back and give the details but he was breathing too fast for too long! He is worn out! Pray for all of us as we deal with it in our own ways. Spencer is feeling better and off his antibiotics for strep! I miss him so much. I can't wait to be back to abnormal again! LOL!
Keep praying!
Blessings and Bear Hugs,
Donna
Thursday, March 25, 2010 5:37 PM CDT
Hello,
Nicholas is in the PICU at JC! We came in on Sunday because of respiratory distress. He was breathing so hard and I couldn't keep his O2 sats up nor his temp down. He has an infection as well as wheezing...don't really know what is going on yet! It is probably viral! He is the sickest I've ever seen him... or rates at the top. He is still having a time breathing but not as fast now...He has had to be transfused with platelets twice and once with red cells as of now. He really needs prayer. He is smiling and flirting a bit but has a way to go to be back to his normal perkiness! He wants to go home but admits he isn't well enough yet.
Keep praying and thanks to everyone at the office for the cards and the balloons from the engineering dept! You all are just the best!
Rem two more FAmilies that have lost their children lately. They really need your prayers.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, March 17, 2010 11:47 AM CDT
Hello,
I did speak too soon. Spencer looked pitiful yesterday evening with a red runny nose and Nicholas had been really droopy during the day. They have both caught Dad's cold and not feeling the best! Nicholas has begun vomiting, probably from drainage. He did yesterday as well. He is having weak spells but will perk up after a while. He hasn't had a high temp, just feeling bad. Hopefully, we can stay out of the hospital, I hope so.
Keep praying for all the ones in the hospital and for the ones getting ready for bmt. Rem the empty arms....
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, March 16, 2010 8:12 AM CDT
Hello,
Nicholas is just fine right now. He has been playing pranks on Ms Billie and quarrelled with her as ususal. He did do a little better in school yesterday. He is anxious about going for this g-j tube change. Every day he will tell me how many days til you know what. We will be getting counts on Friday this week. Hopefully, they have all gone UP! We'll see.
Spencer sounds like he is getting congested like Jeff was over the weekend. He threw up last night and ran a low grade temp. He was really croupy around 4 am and I gave him some meds. He wasn't running a temp this morning but I expect to hear from him some time today. If he gets worse, I will have to take him to the dr. He is such a sweetie! He wants to help with the fundraiser at his school and wants to know all the details. I found him a child awareness bracelet and he wore it to school yesterday. He explained it to several of the children why there was PINK on his bracelet!!! LOL! I tried to find him one with the most red on it but there has to be pink! I do have some bracelets left and we may sell them at the fundraiser.
We had to change the date to the 8th of May! If you want to help with the fundraiser, please call me. We need volunteers desperately! I pray it doesn't rain! or snow for that matter! LOL! If you can't come on the 8th and still want to host a fundraiser, ie. yard sale, bake sale, or something, please let me know. If it's warm enough, Nicholas will be attending! I even thought of a kissing booth! Nicholas may get too tired though! LOL! Ideas? I do have something cooking and will give the details a little later. Hopefully, we will have a great time and help find a cure for FA! IFA Day is kicking off on May 1st and will continue all month. If you have a fundraiser around this time for us, you'll be a part of TEAM NICHOLAS and have a hand in a cure! You could be the one!
Praying for all the families in bmt or going to bmt. BJ is going a month earlier than they thought. He is from Jenkins, KY and his website is www.caringbridge.org/visit/billyestepjr to follow his journey. I know they want your prayers. Too many others are having complications and need your prayers. Rem the empty arms.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, March 11, 2010 8:53 AM CST
Hello,
The boys are doing pretty good. Nicholas continues to do awesome blood wise....he has NOT required platelets in 8 weeks nor red cells in 8 months! Wow! I cannot believe its been 8 weeks without platelets! Thats 2 months....I can actually say MONTHS! Thank God for clones, that is all I can say! Nicholas prayed, clones developed that mimic the nature of the original cell lines. I know that may not be the best thing in the FA world but if it helps in some ways....it's a miracle! God works in mysterious ways, we all know that! God wants us to ASK! We asked for his counts to come up above transfusion levels and they did. Then, not be content enough, wanting them in a safer zone, we asked again and they came up again! Truly amazing, wonderful, glorious, happy, estatic, and thankful beyond measure. God is awesome. Now, he is praying that his white counts and all the others as well come up enough to not need Neupogen and get his PICC line out.
Thinking about going to camp and not needing to stop by Cincy coming and going for platelets is such a relief. Yes, it's the small things in life that bring so much joy to us. Thinking about not going to the hopsital there at all for anything is even better! Truly a huge blessing.
Nicholas continues to struggle in school. He studied so hard for a test and after the third time he made an A! He really studied hard but failed another one. I told him he was just going to have to study harder. He said, "Mom, I'm watching too much junk and not school work!" I couldn't help but laugh. He knows what he needs to do so I guess I'm going to have to ground him from everything! Bless his heart!
Spencer is entering the coal fair again this year. Hopefully, he will get his project finished in time. He has an imagination that is for sure. He is growing by leaps and bounds. No one will believe how tall he is getting. He is such a deep thinker. He messed up on a test the other day and it has worried him to death. Just silly mistakes, he knows how to do the math, just writes down the wrong numbers accidently. Not sure why but hopefully, he will improve.
I think the allergy season is already cranking up or sinus problems are on the rise. Mine has been killing me and Jeff's too. Mine isn't as bad as his is. Hopefully, we will survive. We need a vacation that is for sure. I'm totally exhausted. I guess we've been sleep deprived for too long and it's catching up with us!
Pray for all the FAmilies making decisions about transplant! Rem the ones in transplant, Carter is doing wonderful! Rem the ones that have lost loved ones, I can't even imagine what they are going through. Rem Mamaw and Papaw too.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, March 4, 2010 11:33 AM CST
Hello,
The sun's gotta shine sometime! It really is ALL the time! But the white stuff falling does not fall all the time! Or it hasn't in the past but I do believe it has this winter! It's not celebratory confetti Karen! LOL! Too funny!
Celebrating Nicholas' continued great counts is what we are doing! Platelets were 44k, Hgb is 11.6, and ANC was 850! His counts are staying about the same but we will take it for however long it will last! Nicholas' Ferritin level is down to 473 resulting in a lower dosage of Exjade! If it continues to stay down, he will be off Exjade completely! I'm so thrilled! The side effects of Exjade are so worrisome but I'm thankful they worked to get rid of the extra iron in his little system!
Nicholas is trying really hard to get his grades back up and doing a good job studying! He has to repeat it several times before he can retain it. The other evening he said, "I can't wait to make 100 on this test, I don't like having to study it over and over again!!" Bless his little heart!
We are getting geared up for our International Fanconi Anemia (IFA) Day! Kick off is May 1st and we(hopefully you and I) will plan a fundraiser. If you want to help, please let me know! Needing lots of volunteers to help with a Carnival Day! Spencer is getting so excited about it! He is planning and coming up with lots of good ideas! He is such a sweetie!
Remember all the ones getting ready for bmt. Pray for guidance on the parents behalf. Rem all the caregivers too.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, February 26, 2010 7:32 AM CST
Our hearts are so saddened by the fact that Westin went home to be with the Lord this morning. Please remember the Dietz family in your prayers. I know their hearts are breaking even though Westin is pain free, the hurt is still there. Praying for comfort that only God can give......
*************************************************************************
Hello,
Nicholas had a sick spell yesterday. He has been complaining with a headache for a couple of days. Then yesterday he mentioned his ear was hurting but then decided it wasn't! Not sure about that one, but he and Spencer were playing pretty hard and he became nauseated! He actually was sick at bed time the night before but didn't throw up. He complained with his legs hurting and then threw up a couple of times. I had noticed that he looked pale all day to me. After that, he was fine. I thought his temp was fizzling out but he has bounced from 99.3 to 99.8 in the evenings. He was chilling yesterday too and I just knew he was going to spike a higher temp but he didn't. It was too cold to get him out to JC yesterday and I didn't do bloodwork today. I thought we would end up in JC and may yet, but if not, we will do bloodwork this weekend maybe, just to see where his counts are. I know he is going through bone marrow changes and hope and pray they are all for good and not bad. The pain in his legs worries me greatly. I was joking and told Jeff that he got sick when he began his homework! He really did! He has struggled all week in school too. He failed one test and studied really hard and only brought up the grade a little bit. He was so upset that he failed the test that he cried. Ms Trish has noticed that he is having a hard time retaining information for a while now. This is usually due to low HGB but his has been 11 to 12 for that last few months, so this isn't making sense to me. I have cut out his TV and ninetendo but it really didn't help. It breaks my heart when he struggles. I'm so torn in making him work hard in school or just enjoy his days. It really isn't worth the heartache and worry and the struggles he goes through. It's a hard decision. He is really far behind in all seriousness. He struggles in math really bad. I know if he gets worse in any shape or form, I will have to come to a major decision. He makes really good grades for the most part but he has to try really hard. I know he doesn't have the work load that a 6th grader has but he is making A's and a couple of B's with the work he is doing. His pace is slow but after many repetitions, he gets it for the most part! He may not rem it tomorrow and that bothers him. He had three terms he was to know and read numerous times over last weekend and still couldn't rem them. I finally repeated it verbally numerous times and then would ask him at various times all day and he finally could rem them. He was so proud of himself but you see why he doesn't want me to help him??! He learns it when I drill him!! But again, is it worth it? I know he needs to learn as much as he can but when it makes him miserable, is it worth it? Maybe he just isn't feeling well at this time and just struggling. Maybe he is playing us and just doesn't want to do homework! Maybe I just need to be more strict! Maybe I just need to listen to my heart....
Today is Mamaw's 81st birthday!!! Happy B day Mamaw! The best Mamaw that two little boys could ever have! The best mother any child will ever have! We love you and pray you have many more. We are celebrating tomorrow at noon at Bonanza if you would like to join us in celebrating. I posted it on FB but havne't called anyone....if you are reading this you are invited!! LOL..please forgive this crazy woman!! I just called her and sang the birthday song. I asked her if I was the first but she couldn't remember if I was or not! Love her little heart! Alzheimer is a horrible disease. If your Mom still has her right mind, please enjoy every second you can have together! You can't get back that lost time, that snappy reply, or lost love. Make as many memories as you can with your parents while you have them!! Be good to them and make them happy that you are their child! Love is never too late!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, February 22, 2010 8:41 AM CST
Hello,
Nicholas is doing pretty good! Other than some breaking out in a rash on his arm with the PICC that we think is coming from the bandage we use to protect it, he is pretty good. I think his low grade temp is fizzling out and for that we are thankful. I'm glad all is well for the moment. We'll take it for however long it lasts!
Spencer is doing pretty good for the moment too. He isn't resting as much as he should and I've not figured out exactly what is going on. He has actually taken naps during the day while they were off for snow and that is not Spencer!
Debbie from Marsh Blood Bank is wanting to use Nicholas' photo in her powerpoint presentations to recruit blood donors and he said, "YES! When are they coming to take photos?" I told him we would send her some photos that I have already taken. He wanted to sign he consent form himself! Hopefully, he will get a lot to donate! They are actually providing ST Jude/JC Med Center with blood now and could use all the donors they can get! Tell them that Nicholas sent you! Thanks! We'll never be able to repay all that Nicholas has received.
Praying for all the ones deciding on transplant! Praying for Westin for pain relief. Praying for all the ones inpatient for transfusions, treatments, or transplants. Praying for the caretakes of any sick loved one, like Papaw caring for Mamaw with Alzhiemer. He really needs a break! I wish I could do more.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, February 17, 2010 9:02 AM CST
Hello,
Whooo hooo! Nicholas' platelets are 41k!! and his HGB is 12 and his ANC is 1504!! YES! AMEN! Praise the LORD! Isn't God just awesome! It's just amazing! 5 weeks without platelets and 7 months without red cells!!! Absolutely amazing! Miracles are still happening today! Prayers are still being answered. God is still on the throne! Thanks to all that have prayed for us! Your prayers have been answered! Don't stop praying, we aren't out of the woods yet.
Spencer is out of school again today. This makes 14 days they have missed due to snow! I guess their scheduled Easter week long break is now gone and the last day is now up in June! YIKES! I hope it doesn't interfere with Camp Sunshine! It's at the end of June this year. Probably will be cold there during June! LOL! Spencer is enjoying Sissy Bear, Mamaw, and Papaw! Papaw is still suffering with the remainder of his shingles. They were really painful for him. Mamaw continues with more and more symptoms of Alzheimer. Amazingly she can still remember all the tunes to the songs and is still singing! Bless her little heart! She is a jewel and we love her so much! We have been so blessed to have them.
We will be celebrating her birthday on Sat, Feb 27 at Bonanza in Wise around noon if you want to join us! Her 81st B-Day! God is so good to us!
Please remember all the children in your prayers that are in the hospital, taking treatments, or tranfusions. Rem all the FA children in your prayers.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, February 12, 2010 11:24 AM CST
Boo!
Hello,
Yes, I'm updating and yes I should have several times!! Didn't realise it had been so long. I can't rem now what I've said about what has been happening so if I repeat anything, say, "She is so crazy!", then laugh, and keep reading! LOL! First, he is doing pretty good. Itching on his feet but that seems to look much better, hands are still a little speckled, and face flushes up every evening and running a low grade temp. It could have been "Fifth's" but this is the second time in a while that he has had these symptoms......hmmmmmmm. He also has had a hive a day for two or three days. Not sure what is going on totally. I have my theories but nothing concrete yet.
His cbc results yesterday were awesome except for his ANC which was 255. Platelets were 37k, Hgb was 11.5 and he hasn't had platelets in 4 weeks nor red cells in 7 months! Awesome! His marrow has to be producing platelets and red cells on its own! Now, if his white count will go up instead of down, we will be on our way to no PICC line!
Nicholas began asking questions about whether older children were always taller than their siblings. He is bothered by being short and having short arms. I told him the usual, that everyone is different and it all depends on which gene you receive from your parents, etc. I explained that God created us just the way he wants us to be. Spencer mentioned Jo and Jacy and Nicholas stopped in his tracks and asked, "Does Jo and Jacy have FA?" like he was totally shocked. He then sort of smiled and said, "Like John Hanna?" He compares everything to his hero, karate instructor, John Hanna!!! It's so sweet! If he is like John, everything is ok! It's just precious to see his expressions when he talks about him! He thinks John is the dude! He will look forward to more karate lessons in June! John, we are praying for a speedy recovery for you!
Spencer is doing pretty good. Having some sleep issues lately but overall, he is ok. I loved listening to them playing yesterday! They make me laugh!
Praying for all the children in hospital or getting treatments and transfusions. Rem all the children in bmt!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, February 1, 2010 9:09 AM CST
Hello,
Guess what???????? Nicholas' platelet count was 43k!!!! Can you say M I R A C L E!!!!! It is a miracle! They haven't been this high on their own since about six years! Unbelievable! Amazingly Awesome! Praising the Lord for everything! I told Nichlas and he smiled from ear to ear and his eyes kept getting brighter and bigger! He jerked his head as he realized the God had answered his second prayer! He kept smiling! His NP Angela asked him if he had been praying again and if she could call him and tell him her prayer requests! Nicholas looked so serious and shook his head yes! It was so sweet! Can you believe it? It is awesome! Thank the Lord!
We took him to eat Chinese and he was so excited! He loved his fortune cookie! Guess what it said!!!! "Your desires, if they aren't extravagrant, will be granted!!!" He couldn't believe it! It was so funny! He was so dumbfounded! It was hilarious!
We are all just thanking God for this miracle. However long it will last, we have to praise HIM for it! I told Spencer and he just talke so sweet to him. Called him sugar plum, sweetheart, sweetie, and every other endearment! So sweet and precious! He was so happy too!
Pray for all of us as we travel this leg of the journey! Papaw has shingles and needs prayer! He is at the drs today. Mamaw is too, her heart has been racing away with her several times and she is getting checked out too! Pray for all the children in need of bmt, treatments, or transfusions. They all need your prayers and the caretakers as well.
MIRACLES, Blessings and Bear Hugs,
Donna
Wednesday, January 27, 2010 8:18 AM CST
Hello,
This morning I woke up with a thankful heart! Thankful for my family. Thankful that we have had 11 years with Nicholas and 9 with Spencer! I was telling them about Charisse passing away last night as we were looking at the globe. No, I hadn't told Nicholas yet. He wanted to know what happened and I told him. Spencer wanted to know if it was Jasper's mom! He remembers Jasper from Camp! I told them about Jasper's mom going to have another baby!! Immediately, Spencer wanted to know if they were coming to camp or not! Have to have some good news along with the bad I guess.
Nicholas wanted to know where on the globe that Jesus lived. He wants "to go see where Jesus was born!" He picked out his route and told me he would have to fly and then drive part of the way! He has it all figured out!
We will be going to SJ tomorrow for bloodwork and a transfusion IF he needs one. I'm hoping he doesn't need one but his face is telling me he may be a little low, nothing major, just a few specks that only I can see! LOL! He is doing pretty good overall.
Praying for Peter, who is suffering from GVHD, Alicia also suffering from GVHD, Carter who is beginning his bmt, Olivia is getting ready, Ryan in bmt, and all the ones making decisions on whether to bmt or not. Praying for a miracle for all of us and comfort with the decisions we have to make.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, January 25, 2010 11:50 AM CST
Hello,
We are all well and still kicking! Spencer spent the day playing Sat and came home pale as he could be! I think he played too hard! Nicholas is doing ok so far. Nothing new had developed that we know of and we'll go to JC Thurs for bloodwork. I'm praying his platelets are above transfusion level!
I spent the Sat eve attending my Uncle Wayne's funeral. He was loved by so many and there were lots of people there. It was like having church instead of a funeral service. He would have approved but I'm sure he wouldn't have wanted to be back here on earth! Please continue praying for his wife Jean and the children. Thanks to Indian Creek FWB church for the dinner for the family after the burial yesterday.
Mamaw did really well and knew lots of people she hadn't seen in a while! I was surprised she knew them. She would get confused but it was mostly with the younger generation, she couldn't keep up with all the grandchildren. Goodness, no one could, they have all grown up!!! LOL! Overall, she did wonderful!
Nicholas is doing pretty good so far in school too. He has another teacher that is helping him make up all the work he has missed so he has school on Fri and Sat too! He has Ms Julie wrapped around his little finger already and there is just way too much giggling going on!!! He thinks she is so pretty and I do believe he is smitten! LOL! She is a daughter of an older classmate of mine! YIKES! I'm feeling too old! Where on earth has time flown?
Rem all the children beginning bmts, deciding on bmts, and the ones that don't have bmt for an option. Rem all the ones taking treatments. Rem Nicholas and all of us too!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, January 22, 2010 8:52 AM CST
Hello,
Well, we decided to step out on faith and not go for blood work this week. His counts were 20k last week and he was transfused a day late and decided that he could possibly hold out until next week. He sneezed and coughed last night and then complained of a headache which dropped my heart into my feet! I was afraid he had ruptured something and needed extra platelets! He seemed fine though. Goodness, there isn't a decision ever made that isn't second guessed a hundered times each! If there were to be any sign of blood we would go to St Judes immediately! That is a given any time! I think we really need to give his marrow a chance to develop some platelets. We'll see! I hope next week they are 40k!
Spencer gets to go to the Fun Expedition tomorrow for a fun filled day! Thanks to everyone that bought popcorn from him, he is now getting his reward! He hasn't slept well this week and deserves a break I guess. I need one too! LOL! It may have been the Cincinnati trip or he may be getting sick. Hopefully, he will be sleeping better soon!
Please remember my Dad's family in your prayers. They lost their brother, Wayne. He passed away last night. Wayne was the best Uncle ever! He was so humble and an inspiration to me! I loved him very much! Please rem his wife, Jean, and the children and grandchildren. He will be missed so much. Everyone loved him.
Rem all the children in bmt or in the hospital. Too many needing a healing touch from God! Pray for all of the caretakers as well.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, January 19, 2010 12:39 AM CST
Hello,
Where on earth to begin!? Sorry I haven't updated, just been too busy and yes, I've had to process what all has happened myself. Ok, for a while Nicholas had been complaining when we flushed his line of something being cold! Nothing was obvious to the naked eye to make us suspect that something was just right. He did it again on Wed night and told me to feel of his arm. I did and it had a cold spot at the PICC site. I took the dressing off and it looked damp inside on the dressing. It looked like blood and saline had seeped out. I thought I'd gotten water in it from his bath. I took the dressing off, cleaned it, and redressed it. On Thurs morning, I looked at it and sure enough it looked just like the night before. I knew then that it was leaking. We went to JC for his transfusion and I told the nurses. The dr wanted to pull the PICC immediately. I told them that they would use that one to place the new one so I wouldn't let them pull it. No PICC line means he needed an IV for the platelet tx! The nurses tried and couldn't get the IV in. Nicholas bawled his little heart out and said, "I can't stand any more of this Mom!" He buried his head in my chest and just cried it out. We all cried. One try was enough for everyone! No transfusion. We left St Judes and headed home to pack to go to Cincinnati and got there around mid-night. Everything was scheduled for Fri, IV, platelet transfusion, and then PICC line replacement.
At Cincy, they called in a Vascular Team for Nicholas' IV and they were successful in the first attempt. Whew! Nicholas was so proud of himself. He did wonderfully! He said, "Mom, I did it! I really did it!" God love his little heart! With platelets on board, we went to get his PICC line in and there we waited forever! New computer system equals problems and waiting! Finally, they called us back. Nicholas was so nervous! The PICC line team did the initial work and he kept telling them to be careful and demanded to know every move they were making and why they were making it! They complied and were really patient with him! The head nurse drew blood out of his PICC line and the blood oozed out in a drop on the side of the line. It had developd a hole in the line where the line sometimes bends. It was just worn out! When they were ready to put the new on in, they called the dr in. The dr was Australian! They were shocked that Nicholas had had that PICC line for 2 years and 5 months! Having it that long could also make it harder to come out but it didn't! He brought it out fine but when he was putting the new one in, it got hung and wouldn't go in any farther. He asked Nicholas to cough and of course, Nicholas did and it pop the rest of the way in. They told Nicholas to turn his head to the right when it reached a certain point and that would help. He turned his head before they told him too and it really surprised the dr! Nicholas was a big help! Nicholas was thrilled to have his new line in! Then, we had to wait for over an hour just to get his IV back out! Rem the new computer system? Yes, it took forever to get the order in and for the PICC team to find it!!! I just thanked the Lord for a smooth replacement! I don't even want to think about what may have needed to be done if they couldn't have. Next, Nicholas wanted his steak! Yes, he got it! We were all exhausted but came on home after we ate. Long, long, mind boggling, mentally draining, physcially exhausting couple of days! I don't think we are over it yet! LOL!
The boys did great on the way up there and back! We played I spy, descibe an animal, guess what I'm thinking of, and just talked and sang. Overall, they did wonderful! Spencer was worried about his brother and would pet on him but would also pester him occasionally! On Sat, Spencer had a bowling day with the Cub Scouts and did pretty good! It was fun. Nicholas wanted to go but it was still too cool to get him out. He asked, "Mom, when I get more platelets and it warms up, can I go and do things too?" We'll have to plan some fun things this summer for him! Camp Sunshine is in JUNE this year!!! They are looking forward to camp already!
PICC line Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, January 6, 2010 11:47 AM CST
Hello,
We are all well and still kicking! I cannot believe more snow is in the forecast! Tomorrow, as we go to JC, it is suppose to hit us again! I pray we get back home before it hits. I will update when I get counts tomorrow, Lord willing!
Nicholas is doing great! He will get back in the school groove today much to his dismay! LOL! He has been doing his homework and I created a matching game with the explorers he is learning and he loved it! Spencer caught on immediately and Nicholas was furious that Spencer got it right the first time! It was funny!
Nicholas' face flushed up yesterday for no apparent reason and I just held my breath.....waiting for a temp spike but it didn't happen. Thank God! Nicholas hasn't had much secretions at all. Very unusual for him not to cough up a lot of junk, any given time but that is not happening. He looks a little bluish around his mouth and now I'm worried that he has a blockage in his lungs. I know I'm a worry wart but I have to be in constant monitoring mode. He complained with leg pain again last night too. He didn't walk much and that was probably part of the problem! He played his nintendo too much yesterday! He and Spencer loved the lego Batman game. LOL!
I happened to see on one of Nicholas check out papers last week that the dr had also checked MDS as a diagnosis and just seeing it threw me for a loop! I know it but to see it written on paper took my breath away. It's like all the blood just washes out of your face into the floor. How much more can a parent stand all of this anguish, pain, gut wrenching, heart aching, worry, and frustration? I ususally don't write about what we, as parents, face but sometimes it really hits hard. Another reason is because another FA child is facing this as well and it brings what we face to the surface. Reaching out to them because I've already been there for 5 years and know what they are going through. Yes, 5 years this month, Nicholas has been transfusion dependent but I'm so thankful that little imp is alive and well!
Last night, he disgustingly asked me what I thought he would be when he grew up. I told him he could be whatever he wanted to be and not to let anyone tell him any different! He said, "I know with hands like these and what I can do with my feet, God has to have something special in mind for me to do!"
Rem all the FA children/adults in your prayers as well as the parents. John is home! PTL! Joshua is doing much better. Delia is doing awesome! Ryan and Peter are doing great! Carter is beginning his bmt journey. Emma is needing transfusions. Jo, non FA, is in bm failure and needs your prayers too.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, December 31, 2009 11:46 AM CST
Hello,
Nicholas is getting platelets right now! His counts were 15k, his hgb was 11.8, and his ANC 1938! Yes! NO red cells again this week....meaning next week will be 7 months without a red cell transfusion!! Hard to believe isn't it!! Not really! He is still requiring platelets but I think they will continue up as well. He is really above transfusion level but where he is feeling so much better, he is wanting to play too rough for my comfort zone. If he were above 20, I'd feel much better and wouldn't get them every week. Help me pray for that one too.
Spencer went shopping with me and was a great little helper except for the words, "This is boring!" LOL! Typical male, I guess! I did see a little girl eyeing him and told him I was putting blinders on her eyes! He laughed at that one! He has already eaten his pizza for today! Yes, his main course!
I cannot believe tomorrow is the first day of 2010!!!! Unbelievable! I just can't get it in my mind that this year is gone already. I hope everyone has a wonderful new year, happy, healthy, and blessed beyond measure.
I forgot to mention....we got our power back on last night! YES! Papaw and Mamaw's are still off though and several others as well. Pray for them too!
Happy Blessed New Year's Miracles,
Blessings, and Bear Hugs,
Donna
Wednesday, December 30, 2009 7:33 AM CST
Hello,
No, we didn't get power back on at 4 pm!!!! False alarm! It will be another 4 to 5 days is what they are saying now. I guess it will be on soon if the snow coming in tomorrow evening doesn't hinder that process! I'm about tired of all this mess! I guess you get use to it, just accept the fact, and do what you have to to survive! Survival Mode has definitely set in especially when you cannot do anything about it! I could get bent out of shape in a hurry but what good would that do? It's hard enough on the children without me huffing and puffing. I just try to make the best of a bad situation and grit my teeth in the process!!! LOL! There is progress, for some are getting their power back on and they are getting closer to our home. One of these days, we won't be in the dark! It's ok to be in the dark some time, as long as you don't stay in the dark! HA!
Praying for the ones that have lost loved ones during this time. Also, rem us in your prayers as well as the ones getting treatments, transfusions, or transplants.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, December 28, 2009 8:31 AM CST
Hello,
I don't believe in Santa! He didn't bring electricity for Christmas!! LOL! No joke, we are still without power and now, gas is low for the generator. I'm tired, frustrated, aggravated, and exhausted mentally and physically! But, we are thankful that all is well and we have each other! Things could be a lot worse! I'm thankful we have that generator! We should get more propane in a day or two! Long story! Jeff has been busy helping everyone! Bless his heart, it keeps him busy keeping kerosene and gas tanks filled.
Nicholas and Spencer are doing fine. They enjoyed all the snow before it melted! Nicholas laughed and laughed watching Spencer play in it! It was flurring again this morning! I think I've had enough snow! It still looks like a war zone around us with all the trees down! That was one heavy snow!
I hope everyone had a Merry Christmas! The boys really enjoyed their gifts! I took some photos but haven't uploaded them yet. I finally talked Mamaw and Papaw into coming up our house for dinner. Mamaw doesn't want to get out of the house but she really enjoyed it. She said our house was so warm. They have gas logs too but our house must have been warmer. I baked Papaw corn bread in a toaster oven so he was one happy camper! I think this has to be the craziest Christmas we've ever had! It just doesn't seem like Christmas! I've just about packed up all the decorations already! We did get to enjoy them the first few weeks of Dec though! It was enough! I told the boys that we celebrated the birth of Jesus every day not just at Christmas! If He is not in your heart, the decorations are meaningless.
Santa didn't have power or water either so we had to cancel his visit! I learned later that he did come up to the house but I didn't hear him! Sorry Santa! Thanks for the videos of last year!
Please rem all the ones still inpatient or getting treatments, transfusions, or transplants in your prayer. Pray for us and all the ones without power and water.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, December 24, 2009 11:11 AM CST
Hello,
Merry Christmas!!! We pray that you have the merriest one yet even if you have no power or water. Christmas isn't in the lights, presents, or all the food, it's celebrating the birth of Jesus in our hearts! I'm thankful that we have what we do. If our gas doesn't run out, we will be able to cook a few items and bake in a toaster oven but I'm sure we won't go very hungry. Yes, the gas tank is getting low and refill date is Jan 11! I do believe we are very spoiled! Makes us realize just how dependent on power and hot water we really are!
Nicholas is getting his platelet transfusion right now. His platelets were 17k, hgb was 11.8, and his ANC was 2008. He was visited by Santa! Spencer received a package of match box cars and trucks! He was surprised! Nicholas was totally shocked with a gift that he had asked for months ago and probably forgot about! A candy striped magnifying glass!!! It was adorable! Yes, only Santa could have provided that one! LOL!
Please remember all those without power and water, including us! Rem all the ones in the hospital too.
Merry Christmas miracles, Blessings, and Bear Hugs,
Donna
Tuesday, December 22, 2009 9:37 AM CST
Hello,
Well, the snow that was predicted actually hit us very hard! I left work at three and didn't get home until 5:20 pm!!! It was horrible!!! Vehicles abandoned in the middle of the four-lane, wrecks galore, and rubberneckers holding up traffic!!! A logging truck was stuck and 18 wheelers were too and I ended up in the ditch! We watched one guy get stuck and Spencer said, "Mom, we need to pray!" We prayed for him and he just drove out of there as pretty as you please. He stopped and I told him what Spencer said and he was very appreciative of the prayers! Then, realized that I had gotten over too far to let him by and was in the ditch before I realized it. I finally made it out with someone pushing on the front of the vehicle! It was a mess! I arrived home and then it took Nicholas' nurse a hour to go 15 minutes to get home!!! The roads were horrible. The snow was so heavy that as the evening progressed, trees began uprooting and the power went off! There were 20 trees that had fallen in a quarter of a mile on our little road! Jeff got trapped trying to get Sissy Bear to our house and they ended up walking! Thank God we had gas logs and a generator! Without Jeff's forsight to install the generator years ago for Nicholas' equipment, we would have been in a terrible shape!! Nicholas and Spencer have faired just fine! They love camping out!!! LOL! Keeping socks on them is another story!!! Nicholas hates socks!
There are many in bad condition though and they really need our prayers. Please pray for all that are without electricity, heat, and water.
Remember all the ones inpatient and all the empty arms this Christmas!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, December 17, 2009 11:00 AM CST
Hello,
I didn't realize I hadn't updated all week! We had labs drawn yesterday and his platelets were low. We came in for a transfusion today. Spencer came with us today and has eaten his pizza already!! Nicholas' hgb was 11.8, platelets were 16k, and his anc was 2080. Overall, he is doing pretty good.
They are so excited about Christmas, and cannot stand themselves. It's so funny! I forgot to write what Spencer said at the children's Christmas brunch. He sat in Santa's lap and when Santa asked him what he wanted, he replied, "I just want to see my brother happy!" Santa didn't know what to say except, "That's good! Oh, Oh, Oh!" No, he didn't say it backwards, I was just being crazy! That is probably what he felt! Spencer has told several people that and it breaks my heart! I think he loves to pester Nicholas to pieces but loves him dearly and deeply!
I'm really just about too tired to function but do have some of my shopping finished. Where has the time gone? I just cannot believe this year is gone already. I cannot believe it is just 6 months until Camp Sunshine again! It's going to be in June this year. If all goes well, we will try to go. The boys are already talking about it and looking forward to it, planning their trip! I feel we needed a Camp Sunshine session a long time ago! It's been a rough 4 months in the FAmily world. What is the next 6 months going to hold for us? Only God knows and it's by His grace that we will make it through. I know He will see us through it all!
Keep all of FAmilies in your prayers. Rem Westin in NC trying a different treatment. Pray for all of us!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, December 14, 2009 11:24 AM CST
Hello,
We had a wonderful weekend with only a few throw ups but no fevers! Nicholas is still doing pretty good overall. I don't think we will have to be tranfused this week. We'll get blood work this week and see.
We had family visiting with us on Sunday and it was so good to see them. I love it when everyone gets together and just sits around talking. Nothing like hearing about long ago times. I found out that my brother was so jealous when mom brought me home. He told my mom to, "Take her back to the hospital!" LOL! He was just 3 yrs old though. Too funny! First time I had heard that one! Time is simply flying by! My cousin's son is 20 years old and I just could't believe it! Where on earth has time gone? I know we've just been in survival mode, as Sissy Bear said, for the last 11 years. I think I'm surviving! I've had a terrible headache all week but its getting some better.
Keep praying for all of us and rem Westin in your prayers. He has been on my heart all weekend. He is headed to Charlotte for treatment. Please rem them and pray for his healing. Pray for all the FAmilies inpatient, getting treatments, transfusions, or getting ready to go to bmts.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, December 10, 2009 1:32 PM CST
Hello,
Yes, we are out of the hospital! Arrived home last night around 7:30ish, after a platelet tranfsusion. His platelets were 16k and no one wanted to wait until next week to be transfused. So better safe than sorry, he received a transfusion, one that was needed in 5 weeks. Yes, a long time to for him. Did I mention that the dr looked at his platelets on the slide under the microscope in the lab? She did and said they were big platelets that were produced in the marrow....not small transfused ones!!!! MIRACLES!!!! Still no red cells since JULY!!! Miracles, Miracles, Miracles!!!
Nicholas began asking deep questions.....like, "What happens if I become allergic to the platelet transfusions?" "I don't want to die!" Broke my heart into a million pieces and I told him that his marrow was making platelets now! He smiled really sweet and sighed with relief! I told him we would get whatever he needed when he needed it! He wanted to know if we would go to Cincinnati and get platelets! Then, he said, "Mom, you are too tired to drive to Cincinnati all the time!" I told him not to worry about me that we would do whatever he needed! Whatever it takes to get help for him, we will do it! Bless his little heart! I guess I have racoony eyes again! LOL! Keep praying for him, he is a little worry wart! Oh, btw, he was vomiting and diarrheaing again last night when he asked all those questions. I couldn't believe it! He ran a low grade temp again before we left the hospital. If this continues, we will be back in the hospital before the weekend. We have to keep him hydrated that is for sure.
Keep praying for Nicholas, John, Charisse's family, Joshua, Ryan, Tyler, Olivia, and all the ones getting ready to go for bmt. Treatements, tranfusions, or transplants....3ts all need your prayers. Pray for Westin too.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, December 8, 2009 9:51 AM CST
Hello,
Nicholas is feeling lots better! He isn't vomiting or had any more diarrhea. The drs think its a stomach virus of some type. Everything that has been tested so far is turning up negative...which is awesome! The urine had some bacteria in it but that seems to be pretty common and no cause for alarm. He is on the congested side but they don't use heated moisture for his trach and that always causes him to be more congested than normal! He isn't running a temp anymore either! His counts this morning are: Platelets down to 16k, Hgb has dropped some to 11.7, and his ANC is 2644 which is down as well. I'm not sure if they will let us come home this evening but maybe after platelets tomorrow we can go home. I sure hope so! Nurses, beeping machines, and a hard chair to sleep in equals no sleep! Cat naps just aren't enough. Nicholas did rest pretty good when he could. I told them if he was asleep do not wake him to get his vitals, he needs his sleep! He did wake up several times to use the bathroom too, so we can't blame the nurses for all of it!!! LOL!
He is in a good mood and singing "Jingle Bells" for me this morning to put as my ringtone on my cell phone! I had to sing "You Are My Sunshine" for his MP3 player! Yes, he and Spencer both received one at the Children's Christmas brunch last Sat! He was thrilled it has a recorder on it and loves recording everyone when they don't know it! He is having a ball with it!
I miss my baby and Dad so much when Nicholas is inpatient! Spencer asked us how long we would be gone and called to check on Nicholas this morning. He is doing pretty good with what he has to deal with all the time! I know he worries about Nicholas. Pray for him too.
Rem all the children/adults with FA in your prayers. Some are still in the hospital and really needs prayer. Pray for Nicholas too.
Praying for Miracles, Blessings, and Bear Hugs,
Donna
Monday, December 7, 2009 1:03 PM CST
Hello,
Well, we are inpatient! Nicholas threw up one time Sat but was fine on Sunday until the evening. He begin running a temp and then at 4 am, he began throwing up and has a diarrhea! We came on to St Judes and they started antibiotics, zofran, and did the normal testing. His urine does have bacteria in it. He is just so nauseated and it kills me to see him like this. It could be anything...picc line infection, uti, pneumonia beginning, or just a virus. I just have to be on the safe side with him and get him tested. He gets so sick so quickly! I was on the alert but still don't quiet know what for yet!
Coming to the hospital was really hard for me this time....I keep thinking of Charisse. So being a little on the nervous side, it sure didn't help when a doe ran out in front of us on the way here! Silly thing stopped on my side of the road, I swerved right handed and she pranced away then bounded out of side across the other lane! I was so thankful that I had passed a big truck and was clear enough to get back in front of it! Whew! The Lord was watching out for us again.
Nicholas' platelets are 29k! Just transfused on Thurs and down to 29 already. His Hgb was still 12.4 and his ANC was up to 4500 or there about. He seems to be ok now except for the nausea. He isn't feeling the best so please keep in in your prayers. I'm sure there are so many that need our prayers, just in the FA world.
Praying for Miracles, Blessings, and Bear Hugs,
Donna
Thursday, December 3, 2009 12:10 AM CST
Hello,
Our hearts are so broken for Charisse Howard-Jones FAmily. Charisse passed away yesterday and I will miss her so much. She IM with me and I treasure her friendship. She was a prayer warrior and it is an honor to say I know her. I have missed her these last two months while she was inpatient and will continue to miss her daily. Alan, her husband is just the best and took such good care of her. Thanks Alan for being a wonderful husband to such a wonderful friend. Please rem the family in your prayers. She also had a brother to pass away with FA.
Her passing has really hit me hard. I guess it jerked me back to reality that FA is a death sentence. We received Nicholas' bloodwork and his platelets had fallen to 15k and they did want him transfused. I brought him over here to St. Judes and his counts are very different! His platelets were 24, his HGB was still 12.6 and his ANC is a lot higher...its 3655. All that to say this....he didn't need a tranfusion again today but they had begun the washing process and we didn't want to waste them. He is just about finished with the transfusion. I was so broken hearted over his counts dropping that I was just numb, then I felt a peace surround me. I realize that we may have to get platelets every once in a while but I had hoped his counts would continue to climb higher. It's a miracle that they don't drop like before! We'll take any miracle that we can get that is for sure.
Please continue praying for all the FAmilies. I know Charisse's death had hit the FA adults really hard so please remember them as well as all of us with FA chilren. It's just so confusing, she was healthy with only minor problems, she was suppose to live! She was our icon of hope. Now, I understand why I had to keep telling her to "Wait upon the Lord!" He knew her future and His plans for her were heavenly and she is now pain free. Remember Nicholas and all of us in your prayers as well.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, December 1, 2009 7:52 AM CST
Hello,
We had a wonderful Thanksgiving holiday. I felt the best that I have felt in a long time. More energy probably due to a pot of tea that I brewed the first thing but hey, it helped! I cleaned the living room and the boys helped me! They wanted to put up the tree! Yes, we all worked together and got the job done! They put up the tree just about by themselves! The did a wonderful job! They were both so excited that they couldn't be still! Then we cooked dinner and it was delicious of course! On Friday, we kept Mamaw and gave Papaw a break. He went to see his brother Wayne that is in the hospital. Please remember them in your prayers. Mamaw really enjoyed getting pampered and loved on by two little boys! She enjoyed all the decorations and helped me decorate the table on Saturday. Yes, we kept her Sat too. It was a blessing to be able to spend time with Mamaw. She is so sweet and precious. Spencer was her little shadow and helped take care of her. He would hold her hand and lead her to the couch. He was so helpful and so sweet, sitting beside her most of the day! Precious, precious time. She is really content at my house and we are so thankful for that. I think she enjoys all the excitement, the hustle and bustle of the boys! She laughs at them and enjoys them so much. She keeps saying, "Donna, I'm so glad you had those boys! God knew we needed them! They have brought so much joy to me and Fletcher in our old days!"
We will be getting blood work tomorrow on Nicholas. I don't think he will need transfusions again this week. He and Spencer are just wrestling too much and keeping me on pins and needles! I think he feels so much better and thinks he can wrestle a bear! He is getting too many bruises for my liking! He has also started his jabber back up as well! His teacher said he is speaking Nicholasese! He told her that he had been speaking it his whole life! He has. He had stopped for a while and I realized he just hadn't felt up to it! Brought tears to my eyes when he began jabbering again! I had really missed it but didn't realize it until he began again. He never stopped calling us Gommet and Gopin but had stopped the rest of his Nicholasese! He is so funny! Spencer will join in with him! It is hilarious! It is amazing just what God can do with a higher hemoglobin. He has blessed Nicholas that is for sure.
I was thinking of everything this morning, pondering in my heart about unanswered prayers and why God doesn't answer our prayers sometimes. This is what came to me....God has other plans..our unanswered prayers are used for a much higher calling for God's purpose. When things don't go as we think they should, God has other plans that are much higher than we could ever imagine. God knows and understands all. Without HIM, we are nothing.
Continue praying for John, Charisse, Westin, Carter, Ryan, Olivia, Preston, BJ, and all the ones in bmt already. Pray for the caretakers and drs. Pray for Nicholas and for us too.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, November 24, 2009 1:06 PM CST
We have so much to be thankful for......our hearts are rejoicing with Nicholas' bloodwork today. His platelets went UP to 29k, Hgb UP to 12.1, and his ANC is 1566 which is wonderful. Thank you Lord, from whom all blessings flow. I'm thrilled. Just THRILLED.....makes 4 weeks without a transfusion, neither red cell nor platelets! Only blieveable because I know Nicholas prayed with his whole heart, with a contrast spirit he went to the Lord with his plea. Now, last night we prayed again....that his ANC would stay up and he wouldn't have to get Neupogen all the time and for the biggest of all......get his PICC line removed! He got really excited and said, "Maybe tomorrow?" Awwwww, his faith! Don't you wish you could go back to God and renew your faith to believe like a child? We have not because we ask not! So, we decided to ask and ask we did and yes in faith believing we will receive. God is so good, awesome, and wonderful. Worthy is His name to be praised above all others!
Yes, we have thankful hearts! You can guess one thing we are thanksful for! Good blood counts!!! We are also thankful for our family, our sons, and thankful for the Mamaws and for Papaw too. What a blessing to still be able to have thanksgiving with our parents! Take the time to let them know you love them but most of all......show it! It only takes a touch, kiss on the cheek, a hug, or a new tractor! LOL! A small token of love will remain in their hearts for a long, long time. Be thankful for what you have! God has given us what we need, not what we want but what we need! Food, shelter, and loved ones. Blessings beyond measure.
Thanking God for Miracles, Blessings, and Bear Hugs,
Donna
Monday, November 23, 2009 2:08 PM CST
Hello,
Well, we had a busy weekend. Spencer's party was good and he had a wonderful time. Thanks to those that came. Nicholas did not get to go because the temp wasn't high enough. It was a beautiful sunny day but just not warm enough for me to take a chance and get him out. He did enjoy the gifts that we had for him too. He enjoyed playing with Spencer all evening long with all the new toys, mostly GI Joe and Space Police Legos!! He loved it all and has already made all the lego items. He loves legos!
Nicholas continues to be full of sass and quarrels!!! He sure can quarrel up a storm!! I love it of course. He doesn't seem to be dropping in energy although I see some paleness at times. We are getting bloodwork in the morning and I'm curious to see what his levels are. I hope they have increased or not dropped at least. It would be a miracle.....he hasn't had any type of transfusion in 3 weeks! 3 weeks...after having weekly and sometime more during the week when he was sick, for 2.5 years! It is a miracle. I think I'm still walking in the clouds for I haven't come back down to earth yet! Except for a headache that keeps nagging me with dizziness yesterday, I'd still be floating! Must be sinuses that are acting up! Day and Night Quil has been my closest buddy!
We enjoyed Thanksgiving dinner yesterday..yummy! German upside cake is just the best! So good and yes it is sinful, for we all ate too much! We also celebrated Joyel Wayne(Daddy Bear)'s birthday! Now, after this week, Christmas is on the way! I just cannot believe it is Christmas time already. I'm ready for summer but it just didn't happen this year! Summer got lost!
I'll keep you posted on the counts whenever I get them! Pray that we do not have to have any transfusions...:))
Pray for John, Charisse, Delia, and all the children getting ready to go to bmt.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, November 19, 2009 8:58 AM CST
Hello,
Guess what?????????? NO transfusions today!!!! Miracles are happening! Nicholas' platelet count was 24k, his hgb was 12, and his anc is 5733. His white count is up a little and I think he is still brewing for he is still coughing up yellowish sputum. He doesn't appear sick nor is he running a fever but I just suspect he is still brewing. His counts are remarkable any way you look at them! Totally unbelievable but not for us! Nicholas hollered...."Whoooooooohoooooooooo!", when I told him last night. The first time we haven't been to JC for a transfusion or hospital stay every week in about two and a half years......TOTALLY AMAZING......Praise the Lord!
Ok, Happy Birthday yesterday Daddy Bear! We will be celebrating his birthday on Sunday as well as Thanksgiving.
Spencer's birthday party is Sat. Nov 21st, 1:00 pm at Pizza Hut in Coeburn!!! Hope you can make it there! I'm not sure if it will be warm enough to take Nicholas but we'll see. Hopefully, it will be. He hasn't missed one yet. Spencer is so excited he cannot stand himself. We had to keep putting it off until we could all be there! LOL! He loves action figures, legos, and matchbook cars, etc. Please send him a birthday card if we aren't blessed with your presence....he loves getting mail.
Continue to pray for John, Delia, Charisse and all the ones preparing for bmt. Rem us as well.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, November 18, 2009 7:24 AM CST
Hello,
I stayed with Nicholas yesterday as we had no nurse. Billie's dad had a procedure yesterday and did not get good news. Pray for them as they are dealing with cancer.
Nicholas enjoyed a day with me. I called Papaw and asked him to bring Mamaw up to me so I could give him a break! It worked out really well! Mamaw enjoyed Nicholas and laughed and laughed at him. She gets really anxious when Papaw is out of her sight for too long but she did really well, only wanted to walk home once! I told her that I had told Dad that she didn't want to go home, which made her smile! I kept her laughing, pampered her, and kept her fed! She is the sweetest mother on earth! I'm so thankful that we have been so blessed to have her for this long! Her faith in God has been remarkable and inspirational to me. She loves to sing and can still lead the songs at church! It is amazing how she remembers all the tunes. She has battled lung cancer and is definitely a survivor!!! Pretty remarkable woman, that is for sure! I love my mom and dad! Papaw has adjusted really well and has just stepped up to the plate and does what he has too! He is just as precious and a powerful prayer warrior! Thank God for praying parents, yes, the God fearing, hell fire and brimstone preaching, bible thumping kind that can weather the storms with you! In any situation, I know Papaw and Mamaw are praying!
Speaking of prayer, please pray for John, Delia, Charisse, and all the others in the hospital. John is battling gum cancer and pneumonia, Delia is fighting infection that has bottomed out her counts, and Charisse is still recovering from an infection as well. All the children that are getting ready for bmt, Peter, Ryan, Carter, Olivia, need your prayers as well. You know I believe in praying, look what it has done for Nicholas!!! We are getting his blood work at home today....how long has it been since we did that??...years! I don't believe we will need blood products this week, although he has several bruises! Maybe we won't even have to go to JC this week....Whooo hooo!...That would be a miracle and I would love it!
Miracles DO happen, Blessings, and Bear Hugs,
Donna
Monday, November 16, 2009 2:02 PM CST
Hello,
Spencer and Dad spent the weekend camping out and Spencer was totally worn out! Dad too for that matter! LOL! They did have a wonderful "NO RAIN" weekend and that was a first! I did get to take Nicholas for a couple of hours. Mamaw and Papaw went with us and really enjoyed the flag retiring ceremony. Nicholas did get to walk across the monkey bridge with Dad and Dominic's Dad's help. The boy scouts built the bridge and all the little monkey had a ball on it!
Nicholas and I had a wonderful time together! He wouldn't let me out of his sight of course, so we did whatever he wanted me to do! I acted pretty crazy I guess for he laughed and laughed! He has called me 4 or 5 times today so I'm guessing he is missing me. He is a card that is for sure. Medically, he is doing pretty good. We are getting bloodwork on Wed to see if we need to go to JC or not. I think his counts will go up some now that he is getting better. He is off his antibiotics but still a little junky.
I cooked dinner for everyone yesterday! I thought of you Sheena as I cooked corn!!! It was all delicious, even if I did cook it!!! LOL!!
Please rem John as he battle this round with gum cancer. Rem Delia as her counts have bottomed out. Hopefully, she is just fighting a bug and her marrow will rebound. If not, she is looking at her second bmt. Please pray for God's comfort during this time of decision making.
I'm thankful for Nicholas' counts at the moment. The Hgb came up a little and his platelets fell some but still above tranfusion level. Pray for good counts on Wed!
Miracles, Blessins and Bear Hugs,
Donna
Thursday, November 12, 2009 11:07 AM CST
Hello,
I didn't realise that I hadn't updated all week! Sorry! Nicholas is improving lungwise and now off his antibiotics. His counts today are: Hbg is 12.1, Platelets 24, and his ANC is 4663. No transfusions!! Two weeks now without a transfusion! It's a miracle!
Another issue that he is having is his back has been hurting him. I mean excruciating pain. On Tues, he was really swollen in his face and woke up in tremendous pain. It seems to be going away but still mentioned it yesterday and today. They are going to do an ultrasound on his kidneys while we are here today. Pray that the results are good. Maybe getting too much fluid while in the hospital is creating some kidney issues. Definitely something that has to be checked out. I seem to always imagine the worse but pray for the best!
Spencer is doing good. He seems to be having a much better year in school. He and Dad will be camping out this weekend in honor of Veteran's Day! Fires on 58 will be lit at 5:OO pm on Fri and kept burning until Sun at noon! He is really excited about that! They will be having a flag retiring ceremony at 2:00 pm if you have an old flag, please bring them by the Chevron on US 58!
Rem all the children with FA that are in need of miracles. My nephew Wes had the flu and is now battling pneumonia, please rem him in your prayers. He seems to be doing some better. Rem all the empty arms and hurting hearts.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, November 9, 2009 11:37 AM CST
Hello,
We had a weekend that was mostly a blur to me. I'm still exhausted but alive....I think! I'm really thankful that Nicholas had his nurse there on Saturday, for I slept about 4 hours! Nicholas continues to slowly get better. His lungs sound horrible and would probably show he has/had pneumonia but I think he is getting better. His O2 sats are in the low 90s in the morning but, after he coughs up a bunch, throws up, and gets to moving around, they tend to go higher. He woke up Sun very irritable and frustrated but after a while Dad made him laugh and he begin to feel beter.
Continue praying for John Hanna, he now has pneumonia and is on a ventilator. Joshua received his 2nd infusion of cells but they weren't good cells either. They are going to try to get the donor to donate again for him. Pray for them during this time. Rem Jeff Dotson family in your prayers as he lost his mom this weekend. Martha Jane was one of the pillars in our community and now she is gone. There aren't too many left.....maybe 6 and that includes my mom and dad. Time is flying that is for sure. Pray for all of us.
More later!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, November 6, 2009 1:17 PM CST
Hello,
We came home last night at 8:30pm and I'm totally exhausted. Nicholas slept all the way home and went directly to bed for the night. He was tired too. He cannot get any rest in the hospital and neither can I. I'm just not comfortable with someone messing with his line when I'm asleep and therefore wake up when anyone comes into the room. Nicholas sounds much better today and his voice is much stronger. He will continue his antibiotics for 7 days and hopefully be over this nasty stuff. There are lots of people that are getting this same thing or nasty colds in their chest or whatever it is! Nicholas seems to be on the mend now and slept much better in his own bed last night! Mom slept some too but definitely not enough.
Spencer is now sounding congested and has a runny nose. I gave him some medicine this morning. I feel like I'm getting it too.
Please rem John Hanna as he recovers from gum cancer surgery. He really needs your prayers as he battles pneumonia as well. Rem Joshua as he gets his third round of stems cells and that its not like the 2nd round where all the cells were dead??? Rem all of the FAmilies in your prayers.
Miracles, Blessings, and Bear Hugs,
Donna
PS. Don't forget the giving challenge ends this weekend! Be a part of our dream. Popcorn sales have also ended.
Wednesday, November 4, 2009 3:32 PM CST
Hello,
We are inpatient in the hospital! Nicholas began vomiting and nauseated after having a sore throat all day on Monday. He coughed all night long and the coughing would begin the vomiting! If he slept for two solid hours it would have been a miracle! Last night was no beter! He didn't develop a fever until late morning on Tues. By the time I got home to get him, he was really hoarse. I gave him breathing treatments through out the night on Mon and meds all night. We get to the hospital and his temp was still 99.7 but it spiked around 7 pm too 100.9 last night. They began antibiotics as soon as we arrived at the hospital. His coughing has been really productive! He also began coughing up blood but that has diminished. He was sating in the low 90s and they put him on Oxygen and drops when he isn't on it. He has to take a breath between each word. His xrays didn't show pneumonia and I think it is bronchitis. His counts are still wonderful!! Yesterday, his platelets were 34!, hgb was still 13 but his ANC was 6320! Today, his platelets have dropped to 30 and his hgb is 11.8. No transfusions as of yet. Earlier today, he began crying in pain with his lower back. The Infectious Control Dr was in the room when he did this and she ordered Dilauded for him. MISTAKE! Just after it went in, he began screaming...."HELP!" over and over for over 5 minutes but it felt like longer. It was horrible. He is so hoarse and he was trying to ask for help, barely squeaking with tears streaming down his face. Broke my heart! He broke out in a sweat, felt hot all over, dizzy, and began vomiting all over again. I told the nurse I didn't want to give that to him again! Never again was what he told me! I totally agree. Afterwards, we snuggled together and fell asleep!
Overall, I do feel like he has improved even though he has lost his voice now. I know he is feeling better because he is a little sweeter! Still demanding but sweeter and thanking the nurses when they do something for him. He is precious.
Keep praying for all of us. Spencer is feeling insecure as well. It's hard on him even though we try to maintain his schedule. The best we can do it is still hard on him.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, October 29, 2009 9:27 AM CDT
Hello,
Nicholas' platelet count is 32k!!!!!!! Does not need a platelet transfusion today! Yiiiipppppeeeee! First time his counts have been this high since 04 or 05 and that was after a transfusion!!! WOW! His Hgb is still 13.0 and his anc is 2800! All good......as Nicholas said, "It's a miracle!" And it is! The faith of a child...he prayed for red cells and received them, he prayed for platelets and he now has platelets! Praise the Lord! Nicholas said last night that if he knew his counts would have come up he wouldn't have prayed for them. I told him his counts came up BECAUSE he prayed! Nicholas said, "I love that prayer!" Spencer also prayed last night that ALL his counts would be high so he wouldn't need any transfusions! PTL! Everyone here is rejoicing! God works in mysterious ways and I'm thankful for that.
Nicholas came dressed for halloween and everyone loved his costume. I'll keep it a secret until I can post the photos!
Please pray for my Uncle Wayne, who is having his gallbladder removed today.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, October 28, 2009 7:16 AM CDT
Hello,
All is pretty good on the home front! Nicholas was awake at 4:30am....getting ready for his halloween party today with Ms Billie, today is her last day this week so they have to party early! He was so excited! He wanted to be awake so she wouldn't scare him first! Too funny!
BONE MARROW DRIVE TODAY!!!!!
UVA at Wise!!!
Science Center, North Wing Atrium
10am until 6pm!!!
Be a life saver!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, October 26, 2009 1:26 PM CDT
Hello,
We've had a wonderful weekend. Nicholas is doing pretty good! Rotten! Hyper! Excited! Full of spunk! Fiesty! Sassy! Sweet! and of couse precious! He has been full of himself lately! I love it though. I'd much rather see him spunky than sick.
They are going to have a Bone Marrow Drive at UVA College at Wise on Wednesday, October 28th from 10am. to 6 pm! Please join the registry and you may save a life! I think they do the cheek swabs now instead of blood work! No excuses now!!!
Spencer is doing pretty good too. He is a sweetheart! He and Nicholas have played and played together this weekend. I love to listen to them play. I know I keep saying that but its precious!
Don't forget to go and donate to FARF by clicking on the link above the Journal. We could win up to 50k!! Thanks from the depths of our hearts! 6 children have passed away and if we could only find a cure, we wouldn't have to give our babies up!
Keep praying for all the children in the hospital! Rem the families that have lost their loved ones. Rem me, I've had a horrible headache this weekend and still in pain. Rem Nicholas as he is battling FA, pray his counts continue to raise! What if we wouldn't have to worry about a transfusion on the way to Camp Sunshine!? What if his platelets go up and remain in a safer level!?
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, October 20, 2009 8:18 AM CDT
Hello,
Quick update of his counts today!!!! Platelets are 29k!! 29k! Hgb is 13 and his ANC is 2450. I'm tickled but scared......
More later, keep praying!
Donna
******************************************
Hello,
I'm back among the living, I think! So is Dad and so is Spencer! Yes, we all shared the stomach virus or something! I guess we didn't want to be selfish! It was horrible and wouldn't wish it on anyone. Pray that Nicholas doesn't get it!
Nicholas is doing pretty good at the moment. He seems to be secreting less from his lungs which is a good thing! He is getting so excited about Halloween. He just called and wants me to wake him up at 6 am on the 28th so he can get dressed to scare Ms Billie! They have a party planned and I have no idea if she is dressing up or not! Knowing them two, they will have a ball! He loves to pick on her! Pray for Ms Billie's dad, he has to have gall bladder surgery this week.
Spencer has been working on a Parthenon project for a while and just had to take it to school yesterday. He was so excited he couldn't sleep! Dad cut out the pieces and Spencer glued them together and did a good job! He was so pleased with himself and proud of it! He helped dad cut out the pieces too and loved the band saw. Dad would let him cut the machines on and off for him but that was ok with Spencer. I'll post photos of him working on it but will have to wait until he brings it home for the finished product photo!
I don't think I've updated in a while!! Not anything deep anyway! I've been dealing with some things that Nicholas has been saying but cannot understand why he is saying them. Yes, he is talking about death and usually only does it when he is sick. I'm confused as he isn't sick and still mentioned something a while back. He isn't sick, as in pneumonia. I am noticing some issues with him and it is showing up in school as well. Trying to remember things some days, he just cannot remember names or facts. Other days, he's on fire! The other evening he was really blue around his mouth but that doesn't make sense to me either, as his lungs seems better. All this is telling me that the cells his marrow is trying to make are abnormal and not working like they should. I'm just speculating and trying to figure this puzzle out! He is definiely a puzzle, but a precious one!
Nicholas and Spencer have played and played all weekend long. It was like they hadn't seen each other in forever! I couldn't help but laugh at some of their playing! They can come up with the funniest of things to play with and say, as in spoons, case knives, and magnets! Too funny! They make me smile. I love my boys!
The mystery card update......Nicholas has had a ball with the cards. When the second one came and had blanks as a signature, Nicholas begin to get the idea it was a game! He said, "This is a mystery and it's fun!" One day, he even had to go to the mailbox himself and look for a card! Then, he received another one with a couple of letter filled in. This caused much speculation and hours of fun...trying to guess who the sender was! That was the main topic every evening......or every time someone would see the card. Well, last night, the sender called and I opened my big mouth and Spencer heard me! They picked up another phone and tried to figure who the caller was! It was hilarious! I had said that I was going to hug the person's neck that did this! Thanks Lena for a fun adventure and I owe you a hug! Great idea! I asked him last night if he was glad he knew and he said, "A part of me is glad to know and a part of me isn't."
Keep praying for all the children with FA or some other horrible disease. Joshua is beginning his 2nd bmt and Elias is still having breathing issues and really needs your prayers. Rem the McCarthy family, as they deal with the passing of Samantha. That is the sixth FAngle that has passed away, pray for all of us.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, October 16, 2009 7:55 AM CDT
Hello,
Our hearts are ripped in two! Another FA child has been called home, Samantha, who fought a courageous battle and won! Why does it hurt so much? She is now pain free, no more hospitals, no more needles, no more medicines, and no more fighting for life. She is now with her creator, a joyous reunion. No wonder the bible says to rejoice when someone leaves this earth and mourn the births. That verse always bothered me but I'm beginning to understand it more and more. Kayla and I were talking this morning and she mentioned that was the 6th child with FA that has passed away in a very short time. Dylan, Stacy, Dianna, Anthony, Samantha, and another child from Canada that I cannot rem his name....far too many......too soon.....
Please go and donate to help us research this disease. We need a miracle and it may very well come in the form of research!
Click here to donate. Thanks! Please help us win 50k! See if you can get 5 more to donate!
The boys are doing pretty good right now and for that I'm thankful. It's a priviledge to be their mom. I'm thankful that we still have Nicholas with us and cherish every minute together. Go and hug your child and let them know you love them. It's important to them and you will be blessed beyond words or measure! Time is flying by. How much time do we have together? Only God knows.
Heart aching, eyes spilling over, praying for miracles.
Blessings, and Bear Hugs,
Donna
Monday, October 12, 2009 1:29 PM CDT
Hello,
Just adding to this update so you can still donate in Nicholas' honor or if you want to do something for Spencer, please order popcorn from the boys scouts and it will be delivered directly to you!
Nicholas is getting platelets and his counts are Plts-15, HGB-13.1, and ANC is 2410. 14 weeks without a red cell transfusion! Yipppppeeeee! His ferritin level is coming way down, in the 700s!! Yes! PTL!
More later, please go and help us win 50k! We came in 2nd last year and won that much plus donations! Thanks! Together we CAN!!!!
Miracles, Blessings, and Bear Hugs,
Donna
***********************************************************
Hello,
Did you know you can help me earn my own way in Scouting? Just click here and place an order on my behalf. There are new products offered online, like flavored almonds and a limited edition BSA tote.
70 percent of your purchase will be returned to me, my unit and my council. Online purchases help us fund fun, educational activities and help more kids experience all the things that make Scouting great.
Thanks for your support,
Spencer
If you cannot click on the link above, please copy and paste this full URL into your Internet browser address bar:
http://www.trails-end.com/estore/scouts/email_referral.jsp?id=3640537
Ok, updates! Rough weekend beginning Thurs with Spencer vomiting everywhere for most of the night. Took him to dr on Fri and 10 hrs later, 2 flu tests, one strep test, one ct scan for appendicitis later, I was totally washed out! He ran such a high temp and chilling while we were there that I just knew it was the flu or strep one! It was "just that stomach virus going around!" Ugh! Then this morning, true to his recent routine that I thought he had kicked, Nicholas woke up vomiting and slight temp as well! He is fine though and hasn't shown any more sign of being sick today. Thank God!
We are entering the America's Giving Challenge again this year. Please help us win either the daily or the overall contest. The more donors we have, the better our chances of winning. Its exciting to be able to do this again this year! I can't do much but together WE can do a lot! Thanks for donating.
Click here to donate. Thanks! Please help us win 50k!
Thanks again for your continued support, without it I just couldn't make it every day!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, October 8, 2009 11:54 AM CDT
Hello,
Nicholas is getting a platelet transfusion right now. His platelets were 11, his HGB was 13, and his ANC is 2530. He is still hoarse but seems to be ok. He isn't running a temp so I don't know what is really going on. He is just super cute and a pure sweet heart, that I know! I also know this is the 13th week that he has not needed red cells! Whooopppppeeeeee! I'm thankful for the little things I guess.
Spencer is still doing pretty good. He has gone all week and not been sick even though he looks pale to me. He still isn't eating the best but hasn't stopped either! He is selling popcorn for the cubscouts! I'll create him a page and post the link on here if anyone wants to order online! Thanks.
Someone sent the boys a halloween card without an address and it has driven Nicholas crazy, trying to figure out who it is!!! I have enjoyed listening to him quarrel about it! It has been hilarious!
Keep the Negrin FAmily in your prayers as they celebrate the life of their courageous son Anthony, whose faith kept him until the end. Keep all the FAmilies in your prayers, there are many struggling with their own issues and now mourn the loss of another. Too many FAngels.
Begging for Miracles,
Blessings and Bear Hugs,
Donna
Tuesday, October 6, 2009 7:25 AM CDT
Hello,
Nicholas is doing pretty good but he had a horrible coughing spell this morning with vomiting! I hate them! It kills me to see him like that. He is now coughing up a little bit of blood. He called and asked me if I thought he needed to go to JC! I told him to stop saying that! Every time he says that, he is usually getting sick! His secretions had been looking lots better except on Sunday morning, they looked horrible all over again! He told Ms Bill that his throat was sore this morning. I think it probably is sore from the vomiting and coughing! One vicious cycle that we are contending with on a daily basis!
Spencer is feeling better. I don't think he had the stomach virus but he did run a low grade temp on Saturday and was vomiting again Sunday. He seems to be feeling much better now though.
Please rem Anthony Negrin in your prayers. He is fighting FA and hospice gave him 7 days and its been two weeks now, only God knows when, how, where, and the why! Too many FA children are not surviving the bmts for some reason! It seems like there was a good season and now a not so good season. Its a hard decision to go to bmt and I pray for the ones that are praying about it now! Joshua needs your prayers too and they are thinking he has lost engraftment. Continue praying for all the FAmilies and others that are going through treatments, transfusions, and transplants. So many at St Judes, it breaks your heart.
If we don't ask, we don't receive.
Begging for Miracles,
Blessings and Bear Hugs,
Donna
Friday, October 2, 2009 12:16 AM CDT
Hello,
Well, I received a call from school and Spencer was throwning up! I know he has been exposed to the flu but his test came back negative! He did get his flu shot with all of us holding him down! He isn't mad at me anymore. He seems to just be having tummy problems, no fever though, and has just been off over the past couple of days. He hasn't eaten correctly, he's been droopy, and just not himself. He seems to be ok for now but he did this last time and ended up worse as the day went on. Pray that Nicholas doesn't get it or he will end up in the hospital.
Nicholas did get his platelet transfusion yesterday and NO red cells!!!! He prayed for red cells and his HGB was 12.8? yesterday!!! 12 weeks without a red cell transfusion again! His ANC is going back up at 3192 which worries me. He has had the sore throat for three days now. He does't have strep according to the tests yesterday. He seems ok for now though. He hasn't had a fever either. Thank God!
Keep all the children in your prayers that are in the hospital or getting treatments, transfusions, or transplants! And the caretakers! I'm exhausted but I do think I'll survive.....maybe!
Praying for miracles,
Blessings and Bear Hugs,
Donna
Wednesday, September 30, 2009 9:25 AM CDT
Hello,
Nicholas is doing pretty good. He continues the hard coughing spells and ends up vomiting but that too hopefully will taper off soon. He seems to be holding his own for the moment. He is really fiesty, quarreling with Ms Bill, and not too short of breath. I am seeing some memory loss....or he forgets what he is trying to say and he is having a few problems recalling his school lessons. I'm really at a loss of what to do on that one. I just encourage him to do his best right now and try not to worry about it. He seemed satisified with that and did well the other day. I think he is just going to have good days and bad ones at this point.
Making the most of a good day, yesterday evening he had a dowel rod and propped up the sheet with it. He was just full of giggles as the sheet tent kept falling down on top of us! He had on his camping light on his head and was hunting earlier throughout the house but had to have me tag along with him as Spencer was outside with his dad! While we were under the tent, he just had to call Shey and then ran me out of the tent! Hmmmmmmm, as if I couldn't hear him! LOL! He did have fun though. Precious baby!
I'm still reeling with the lastest developments. Yesterday, the official chromosome test results came back with all cells abnormal with another chromosome in addition to the previous ones having abnormalaties as well. Dr Harris ordered further testing on chromosome 18q and true to Nicholas fashion, some of the changes just cannot be explained! According to my research, it's a toss up to what disease CAN develop first with the chromosomal changes he has. Now, can don't mean will. As I want to question God, I'm reminded with a still small voice, "Trust Me!" Who else is there to trust but HIM? So trust we shall, sighing, I say, "I know Lord, I do trust you!" You know, my mom was the world's best worrier and I use to tell her, "Mom, Can you change it by worrying?" She would always laugh and say, "Well, I guess not!" Then, being Ms Know-It-All, I would say, "Then, don't worry!" Now, I have to eat my own words. No wonder I'm gaining weight! They are tough to swallow but there are just so many of them that I've had to swallow and am reminded daily, no, hourly. I should get tired of chewing on the same cud! LOL!
Trusting in Miracles,
Blessings and Bear Hugs,
Donna
Friday, September 25, 2009 8:21 AM CDT
Hello,
Nicholas woke up early again this morning. He did his normal hard coughing fit with nausea on top of that! I made him get back in bed so he could get a breathing treatment and thus began his melt down. He cried his little heart out and said, "If I didn't have this trach, I could stay up! I'm tired of all of this! God's plan is just too hard for me. This trach and the problems with the mickey button, the deep suctioning, its just all too hard!" Broke my heart into a million pieces and knowing he now has MDS and only God knows what we are going to face now, just killed me. He doesn't even know about the MDS and we will probably not tell him. He doesn't need the extra burden right now. We will probably have to have more bone marrow aspirates and he will know something is up without me saying anything! He just needs to relax and have fun for a while.
After the transfusions, I took him to the library to check out some movies! He was thrilled beyond words! He was so happy and squealed! He wanted some of the ones he had aready seen! He is so funny.
Nicolas complained of leg pain again last night. He does this with every transfusion just about. It's either his arms or legs that ache.
At this time, we will continue to support his system through the transfusions, platelets and red cells. With FA and MDS, he is in a bracket all to itself. Nicholas doesn't have any blasts so he doesn't have leukemia. Basically, he has chromosome changes at this point that could speed up the process to develop leukemia. Prayfully, it won't!
We haven't told Spencer either. He is already having nightmares about something and not sleeping well at all. He has a lot to deal with as it is. I think he is trying in his own way to get Nicholas better. He is helping him excersize and teaching him karate moves that he doesn't even know! LOL! I think this is his way of dealing with it and in his own way, trying to help him. He came home a little nauseated and with rosy red cheeks. I have thought several times this week that he is getting sick. Hoping and praying he doesn't. He has a cub scout camp-out this rainy weekend! Please rem him in your prayers as well as Nicholas.
Please continue praying for all the children with FA. It's a never ending cycle of one thing or another. I know God's grace is sufficient and we will survive by the help of HIM!
Major miracles, Blessings, and Bear Hugs,
Donna
Thursday, September 24, 2009 12:00 AM CDT
Hello,
Today we are getting a platelet transfusion, his platelets are 12 and his HGB is 12.4 with an ANC of 2166. He doesn't need red cells today. The red cells that are being made in his marrow aren't normal ones but they are holding his HGB up.
We got more results back from his bone marrow and he has been diagnosed with MDS, myelodysplastic syndrome. He has several mutations in his marrow already including Monosomy 7 at 1.2 percent, 3q27 at 4.6 percent, and q7 deleted at 88 percent. Monosomy 7 is the precursor to leukemia. He is at a much higher rish for leukemia now. He does not have leukemia and has no blast in his marrow at this point. Now, what do we do? We are already doing it. Transfusions for support, nothing else unless someone has a miracle in their pocket. If only he had good cells in his marrow, we could do chemo but the dose is too high for someone with Fanconi!
God's plan HAS to be better than mine, for I don't have one. I'm at a total loss as to what to do except to let him have as full of a life as I can. We've crammed as much into 11 years as possible but I'm sure we can cram more in if he wants too! I'm continually praying for strength, courage, and grace and it has been sufficient. God's grace is always sufficient. I have a feeling we are going to need lots more...
Does my plan equal God's?
Miracles, Blessings, and Bear Hugs,
Donna
Monday, September 21, 2009 11:31 AM CDT
Hello,
Long, short, fast, hectic, exhausting, but overall good trip to Cincy! Nicholas did as he said he would do and I'm so proud of him! He is a true, brave, hero! He requested to be put to sleep by himself and his wish was granted! He told me, "Mom, I'll tell you good night and that I love you and then I'll go to sleep!" We said we would count to his birth years and then he would do it! Well, it didn't quite happen like that but he was well on his way to sleep by the time I counted to 11. He was such a trooper! He told them to be patient while he got his courage up! Ah, he broke my heart a thousand times and then some. He forgot to tell me all that he said he would and kept asking them..."How long is this going to take?... I feel funny!"..as he was falling asleep. The news?...Lung wise was wonderful news so far! The dr said his lung looked remarkably much better than he thought they would. Clear muscus mid lung which he said he had never seen! Clear? What he coughs up just isn't clear! What he took as samples were a lot murkier than what he could see as well. They are cooking now and all virals came back negative so far! Yes, we thank the Lord for that!
Marrow? Nothing back that is final as of yet...usually takes about a week....I do know there is no leukemia at this point! Yes PTL for that one too.
Nicholas did get his flu shot while he was out too! He did chill and run a slight temp but overall seems to be ok now. Still coughing up lots of junk! Still nauseated this am and threw up 4 times around 5 am! I cannot stand to see him so sick! It is just heartbreaking! What is causing the nausea? What is causing the coughing that causes the nausea??? I hope to have some answers soon and then again, we may never know.
Spencer did go with us on this trip and as usual, was so sweet with Nicholas. He is a little worry wart! We didn't eat until Nicholas could and Spencer was starved to pieces! Nicholas' O2 levels wouldn't stay up and we were delayed for a while but overall, it was a good, tiring, trip! LOL! It was good to be home and snuggle with my babies this weekend!
Rem Carter, he has the flu, Will is getting over the flu, and Alicia is having some issues as well. Michelle is doing a little better too. Rem Nicholas and all the other FA patients in bmt or various stages of treatment.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, September 14, 2009 12:56 AM CDT
Hello,
Nichola was totally shocked with Joseph Young Magic(www.josephyoungmagic.com) He had asked and asked and I told him that I had tried to get him. He finally quit asking and was thrilled! He said, "You played a good one on me, didn't you?" LOL! Then, he asked for the Ben 10 Alien Force but I had already got that one for him. He said it again! He kept saying, "This is the best birthday I've ever had!" Then, when Carloyn brought him the knife, he said, "I've hit the jackpot!" He was so excited he couldn't stand it! He was thrilled beyond words, but look at the twinkle in his eyes! He beamed!
Spencer hit the jackpot too for we all got him gifts and they both received money as gifts as well. Overall, it was a ton of fun for the adults too. Joseph did a wonderful job and it was well worth it! He made everyone laugh! Some of those invited had soccer games and some were sick so we had more adults than children but they still had fun!
Thanks for all the birthday wishes. Thanks for all that attended and helped make our little guy so happy.
Please rem. Will (www.willpowerfund.com), he is in the hospital with the flu! Rem all the other children inpatient for bmts or treatments. Rem Nicholas as he gets scoped this week.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, September 11, 2009 8:47 AM CDT
Hello,
I do believe we now have a plan......Nicholas' previous teacher Ms Trish is coming back again this year!! Oh, I pray that is so! That just thrills my heart, he doesn't know it yet! Boy, will he be surprised! He said last night that he "would love to have her back but we know she cannot!" I can't wait to see his expression when he sees her!
The birthday party will be at the Davis Community Center tomorrow (Saturday, the 12th)at noon! Open invitation! Please attend if you can, he will be so excited! Magic is in the air.......whoo hoo! We filled up the treat boxes last night and he was into everything and being so helpful!;) He keeps thinking of things we can do! He said last night, "I hope someone shows up for the party!" LOL! So please attend if you can!
Birthday Blessings and Bear Hugs,
Donna
Thursday, September 10, 2009 9:57 AM CDT
Hello,
Whooo hooo, Nicholas' hemoglobin is 13.2!!!!! Awesome!! Platelets were 8k and his ANC is 2300! I'm thrilled. Yes, I was hoping for no platelet transfusion but looking at him I knew he needed them today.
Wonderful birthday gift today with that HGB! Today, my baby turns 11 years old. As Sissy Bear said, 11 years of blessings....far too many to count. He is feeling pretty good and they are giving him a small bday party here at St Judes. I keep telling myself that I will not cry! I'd better say, I'll try not too! The tears are on the brim! Wonderful tears of thankfulness, blessings, and joy beyond compare. I'm so thankful for this birthday and such wonderful counts. No one would have believed we'd be here..for him to have made it this long. There is power in prayer! He has lived on prayers. God has given us a wonderful gift and blessed us for 11 years with him.
Birthday Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, September 9, 2009 9:13 AM CDT
Hello,
I finally received, borrowed, and philfered some photos of camp sunshine 09 and created a slide show! I still haven't found my camera card and am still crying inside...but I think I'll live. If only I had a brain.....
Nicholas continues to cough his little head off but other than that, he is rotten! He is so excited about his birthday party that he just cannot be still. He counts the days....tomorrow my baby turns 11! Wow! Can you believe 11 years have flown by? He is so sweet. I thank God for him every day and even when I'm feeling horrible, I can still appreciate my boys. I do believe that Nicholas has beaten the odds, don't you? I think he will continue to have a rise in his counts that is going to astonish even me! What if his platelet count is 20k tomorrow? I think I could say "no" to a transfusion, if they were that high and he wasn't coughing so hard. That would be awesome wouldn't it? Amazing thought! Now, that would be a wonderful birthday gift!!! A Miraculous Magical Birthday!!! He wanted a magical theme for his bday and it may be more magical than he could ever dream! I'll post as soon as I know his counts tomorrow.
We are still waiting for a special ed teacher for Nicholas. I cannot believe that the first six weeks will be over with next week and we still do not have a teacher! Ms Trish, I may be knocking on your door and begging for you to return!!!
Spencer is having a little problem with one of his classmates. She is calling him names and breaking his heart in the process. She is also hitting him on the head with her pencil and distracting him during tests. I'm not sure how this will be handled but I hope it isn't going to be a major problem. I do not need any more problems. Growing up is hard on these little guys and not everyone is nice. Hard lessons to learn in the young tender years. If only they could remain as innocent as they are now, but they do have to grow up! Please help me pray for him too.
Contine praying for all the children in your prayers that are struggling post transplant. Rem the empty arms.
Miracles, Magical Birthday Blessings and Bear Hugs,
Donna
Friday, September 4, 2009 8:08 AM CDT
Hello,
Good news first...Nicholas' hgb was 12.3, platelets were 15k and his ANC was 3536!!! Yes, all counts were up on their own!! I'm excited on one hand but waiting for the bomb to drop on the other. I'm so thankful that he has gone 8 weeks without red cells. That is a miracle! Keep praying that his marrow continues to make cells on its own and that they are healthy cells. In FA, the marrow can develope clone cells....cells that mimic other cells but only function in a similiar way, not up to the full potential of a normal cell. They usually don't live as long and can also create MDS or Leukemia. That is the only reason that I'm apprehensive about his HGB going up. Yes, its wonderful that he doesn't need transfusions BUT are the cells that are showing up as HGB genuinely true red cells? I believe that when God does something it is for real, true and tried, and complete. I know He has heard our prayers and knows our hearts desire. Yes, I keep praying for miracles and will accept them in any form they may appear in, even if they are clones or mosaicism!!
Now, the bad news is about his teacher. She decided that it was too far for her to drive. Yes, we are now in need of a special ed teacher for Nicholas again. I'm sure it will be resolved shortly and he can get on track.
Please keep Dianna's family in your prayers. Its heartbreaking when one that has fought a good fight passes away, it hurts so much. And believe you me, all these children are fighters. Dianna was 11 years old.
Wednesday, September 2, 2009 9:30 AM CDT
Hello,
Our hearts are saddened this morning with the news of Dianna's passing. She fought a good fight and is now pain free. Fly free Dianna........ Please rem Dianna's family in your prayers as they are dealing with this loss.
Nicholas is about the same. He did meet with his teacher yesterday and he likes her! She left him some homework for today and he already had that finished by the time I came home. He has been in the best little mood! He and Spencer were playiing scoccer in the hallway and I just listened to all the laughing and giggling, so sweet and precious.
I did listen to his lungs last night and they still aren't clear! I think I'm just holding my breath. He is still coughing up a bunch of junk. I just pray his little body fights off the bugs on their own. That would be a miracle in itself!
Please rem all the others in the hospital still fighting for their lives. Rem the empty arms.
Heart breaking Blessings and Bear Hugs,
Donna
Tuesday, September 1, 2009 7:32 AM CDT
Hello,
Well, the itching actually began on Sunday inwhich I thought was mosquito bites but may have been hives. All over his little legs, he would scratch with his toenails and yes, it brought out the petechia, little pinpoints of broken blood vessels, some weren't so little! He would stand next to the door facing and rub his back on it like a bear, trying to get it scratched in just the right spot. Then, yesterday, he broke out worse in more areas and now I've come to the conclusion he is getting allergic to his antibiotic. His last dose was Sunday night and I hope and pray that he isn't becoming allergic for its the one that is working at this time. He seemed to be getting better by yesterday evening!
He was thrilled when his decorations for his birthday party came in! He just had to see what was in that big box! He thought it was presents! I had made a list earlier and put presents on it and then marked a X over it! I knew that would get him! It did! He couldn't believe it! Spencer couldn't stand it and marked it totally out and put "Lots of presents" on the list!!! I opened the box for him and he loved the "magic" themed plates and the pinata was a rabbit in a hat! He squealed to the top of his lungs! He was so excited! I wished I had my camera!!! We had to show Ms Billie since she will be working and cannot see her suggestion brought to life!!! She couldn't believe I'd found the magic theme in the cups and plates! Nicholas suggested the rabbit out of the hat on his cake but he doesn't know that is exactly what I ordered! His Aunt Glenda is making it for him and I can't wait to see it! I wish we could make it 3D but I guess that won't happen! LOL! I sent her a print of the plate and she will try to create it on the cake. She will I'm sure! She is so talented! I just keep praying he will be well for the party! It's still two weeks away....
I spoke with his teacher yesterday......did I mention that in yesterday's journal??? Probably! LOL! If only I had a brain, I could think! I told him and he is sort of anxious to meet her but dreads it too. I have a thousand things running through my head that I need to do but there is only one me. Nicholas wants to clone me anyway! I wish he could!! He keeps thinking of all the potions he is going to create when he becomes a "Mad Scientist!" Sunday, he told me he was going to create a potion to put on dogs so they could talk! He is so funny! He continuously thinks these things up and tells me! He is so precious! Spencer keeps saying he is going to be a carpenter like his dad! Then he insisted he was going to build houses on the weekends and be Steve Erwin during the week! LOL! He is so sweet! They have both been sweet to each other this week! Look out next week! I know I'm rambling.....If only I had a brain.....
Please continue praying for Joshua, Dianna, Sam, Alicia, Michelle, Tyler, and all the others in the hospital, they really need a touch. Pray for Nicholas.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, August 31, 2009 11:07 AM CDT
Hello,
Well, I guess Nicholas jumped the gun and invited some folks to his party but I changed his plans!!!! He was furious with me and had to call everyone back and re-invite them! His party will not be this weekend, it will be next weekend!! This weekend is the Davis Memorial and while its fun to have the birthday party then, it's too much at one time!! But on the other hand, it's easier for me, now why am I doing two parties?!! LOL! There is another reason but you'll have to wait and see....shhhhh, its a surprise! He is going to love it!!!
I just hope and pray he is feeling good. I can see the old pattern again, off antibiotics..if we are sitting down, he will just lean against me and complains of being tired most of the time. He even sat and watched Dad and Spencer play basketball and baseball. That told me too much! It breaks my heart to see him like this. His hemoglobin was 11.8 but his energy level just doesn't match it! He slept until 10 am Sat! He seemed to feel pretty good but I can see that he isn't 100 percent yet.
He is excited that his teacher hasn't shown up yet but that will be shortlived. She called today and will begin this week!!! Laws changed and he has to have a special ed teacher and they had a hard time finding one for him. I think we now have a teacher and he has a lot to catch up on! Please pray for him as he tires easily. I'm not pushing him at all! I didn't last year either. It's not worth it! He needs to have fun while learning! Hey, I'm going to need pray that my energy level will pick up! LOL! I'm totally exhausted! I think he didn't throw up or get sick only one night last week! On one hand, he seems a little better but he hasn't fully gotten over his pneumonia and we are already off antibiotics. So if he is up sick, I'm up with him!
Alicia and Michelle are out of the hospital! Yayyyy! Sam is progressing and on the mend too. Dianna is still on the ventilator as they ween her off of meds and still needs prayer. Keep praying for the FA community.....
Rem Nicholas in your prayers.....
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, August 27, 2009 11:19 AM CDT
Hello,
Nicholas' HGB is 11.9!!! Yes! It has gone up 2 points from last week!!! This is 7 weeks in a row without red cells! Praise the Lord!!! I told one of the drs at camp about Nicholas praying and his counts went up and the dr told me..."I say he is mosiac and YOU can pray for mosiacism!" No joke...those were the exact words. I pray that Nicholas defies all odds, that no clones are found, that no mosiac cells exist in his little body and the drs have to say....."NOW, we're totally baffeled!" Yes, as you can tell, they may do a bone marrow aspirate on him while he is under for his bronchoscopy. When that is going to happen is another story! He will be off his antibiotics tomorrow and I'm not taking him for procedures during the next week of his birthday! So my guess is that it will be the week of the 14th. I've scheduled his birthday party on the 12 of September at noon and I hope and pray he isn't sick during that time!!
His platelet count is 14k with an ANC of 3762 today too! Even his white count is normal, it's 5.7 today! He is getting platelets at some point today. Hopefully, we'll be out of here soon. I'm still really exhausted, Nicholas woke up this morning at 3:30 but didn't vomit. He just coughed and coughed. He is improving but I really think he needs to stay on antibiotics another week.
Spencer says he loves his teacher but he was scolded the other day and he cried. I think he gets confused about what the teacher is needing. He seems to do wonderful when we go over the homework at home verbally and even on the dry-erase board. I think he is feeling stressed and just needs to relax and do the work. He is still in cub scouts and will be selling popcorn shortly! I'll try to put up a link for anyone that wants to order online! It is really good popcorn! He is such a joy, so full of energy and just talked and talked yesterday evening! He loves to make Nicholas laugh too! He will try his best to be the silliest and do the funniest of things just to make Nicholas laugh! He has a special gift of knowing when Nicholas needs cheering up! And he can be a typical pesty brother too! It's a good mix though! LOL!
Please remember all the children, Sam is doing some better, Alicia is too, Michelle is having a difficult time, Tyler's platelet count came up a little so that kept him out of Cincy! Dianna is still doing much better and surprising the drs too! Go Dianna!!!
Begging for Miracles!
Blessings, and Bear Hugs,
Donna
Tuesday, August 25, 2009 11:30 AM CDT
Hello,
Nicholas is doing better!!! I could tell on Sun eve, he turned for the better. I could see it happening! Yeaaaaaaaaah! He was all smiles yesterday and I had him laughing so hard that he ended up getting sick! He will laugh and laugh and it must cause his tummy to go haywire and he ends up sick! He was laughing at the famiy reunion and I tried to snap a photo of it and he began hurting in his lung and his laughter turned to pain. I didn't capture the laugh! He is still coughing up too much thick junk but I think its getting better. He didn't cough as much last night.
Spencer is getting his picture made today at school! He didn't wear a tie this time! I'm sure he will look wonderful though! He is such a sweetie pie! He really enjoyed camp this year.....I could see a huge improvement. He is enjoying school this year too. Could it be because he is sitting between two girls? Nope! He says they are too bossy! LOL! Where did my baby go? I cannot believe he will be 9 in Nov!! Time is just passing by too fast!
Continue praying for Tyler, his platelets are dropping and he needs prayer, he may have to go back to Cincinnati for his 3rd?? bmt or some other type of treatment. I think they are trying steroids right now. Rem Alicia, she is running high temp, Michelle is battling fluid too, Sam and Dianna are both having to have help to breathe! Pray for all the caregivers too.
Rem if God brings you to it, HE will bring you through it!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, August 20, 2009 12:04 AM CDT
Hello,
Nicholas is getting platelets right now! His counts were 12k, his hgb is 10.5 and his ANC is 4216!! Yes! This is his 6th week without red cells!!!! Praise the Lord! I wonder how long we will go this time without red cells! I think its wonderful! His ferritin level has dropped as well!
The lung dr in Cincy want to scope his lungs but Nicholas has to be off antibiotics for at least a week. That would put us in the week of his birthday so we are trying to schedule it afterwards! I cannot believe he is turning 11 years old! Wow! Time has flown. He wants a magic birthday...I should has said a magic theme! I'm trying to think of what to put on the cake. If you have any ideas, please let me know! Every day is magical! I'm just waiting to see what I can come up with! LOL! I'm going to be busy that is for sure!
We have the Strouth-Lane Memorial Picnic and Service this weekend! I'm not sure what all we will be cooking but I'm sure it will be good! LOL!
Rem all the children going through bmt or other major medical problems. They all need our prayer.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, August 19, 2009 8:08 AM CDT
Hello,
Awww, where to begin! I didn't realize that I hadn't updated! I think I've updated if I write it on FB!! LOL!
Nicholas is doing so so. He is still congested but not running a temp. He has broken out on his feet and hands. Thinking back, his face was blood red in the hospital and I have come to the conclusion that he has the Hand, Foot, and Mouth Virus. He is very itchy. He did begin to feel more perkier yesterday evening. He has coughed and coughed. I've had to give him cold med every night just to help him stop coughing. He just cannot get a full nights rest at all! Last night, he was scratching his feet and hands in his sleep! Yes, I was up more than I was asleep last night as well! Yes, I'm beyond exhausted!
And on top of being exhausted, I'm devastated! I've lost my camp sunshine camera card. I had it yesterday and we were trying to get the card reader to read it. I put it on top of a table, then answered the phone, and got my camera out of my purse. I turned back to get the card and it was not there! Talking about disappearing into thin air!!!! I must have picked it back up and put it somewhere else.....If only I had a brain and could remember my exact moves!! We've torn the office apart to find it but haven't yet! I've prayed to find it! It has ALL my camp photos on it and videos!!!! Surely, it will turn back up some time!!!
Spencer is back in school. He didn't like it on day one and on day two he loves it! He loves his teacher though and has liked every one he has had. I'm so thankful for good teachers! They all seem to really care and really help me by understanding our situation. I'm so glad that God cares about the little things. I woke up with a thankful heart this morning and know beyond a shadow of a doubt that God cares! He cares about every little detail in our lives, no matter how insignificant they would be to others, God knows and understands us.
Keep Sam in your prayers as she is having problems, Dianna is being weaned off the ventilator and doing some better, Joshua is having lung issues and has to stay on Oxygen, please rem them, Rem Dyan's family, Rem all the ones getting ready to go to bmt as well.
Miracles, Blessings, and Bear Hugs,
Donna
Sunday, August 16, 2009 11:38 AM CDT
Hello,
We are being discharged as soon as the antibiotic is finished. Whooopeee! He is still coughing up junk but hasn't had a high fever since we've been in here. I'm so thankful for his improvement! He is perkier than when we were at camp! He smiled really big for the dr and she melted! She couldn't resist letting us go home with that big cute smile! LOL!
I'm more than ready for my bed and Nicholas is missing his cat terribly! That is all he has talked about! Spencer said he didn't want to go home because of school! I'm sure he will be nervous and has a lot to catch up on already!
Now, we'll be back to our "Crazy Normal!" Awwww, crazy normal will be wonderful!!!
Please rem all the children in your prayers, especially the ones on this bmt floor! They all have struggles and issues but really need a miracle, some more than one! To see the little photos of the babies is so heart breaking. Please rem them all! Rem Alicia as she and her Gma Michelle are home or just about home!
Miracles, Blessings, and Bear Hugs,
Donna
Saturday, August 15, 2009 1:20 PM CDT
Hello,
We're still here....the ct scans are taking place this evening around 5...and he has to have an IV placed. He is really dreading it and very nervous. He still remembers all the IV attempts before his first port! He said, "IV is better than being to sleep though!" He is just a brave little guy and tries to find something positive in all things. He is a swh eety!
The cultures aren't ID'ed yet and the waiting game is still on! I really need a nap but when I do, someone comes into the room that needs to ask me something! I think we are definitely on a slow train and I want it to speed up desperately!!! I wish I were patient but I'm not! I really am trying but on the inside I'm seething! LOL!
Nicholas just said, "Mom, I'm still scared!" He has cried and everyone that comes into the room, he panics and cries, "Mom!"
Rem all the children here on this floor that need your prayers. One family is from Lebanon but their child has a different diagnosis. Another family next door had FA I think!
Rem Michelle, Alicia, and Dianna. Rem Dylan Moore's family in your prayers as they cope with their loss. Rem all the ones at camp!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, August 14, 2009 8:01 AM CDT
Hello,
Nicholas is doing pretty good. He ran a low grade temp yesterday and his white count has gone back up again. There is definitely infection somewhere and we have to find it! He had a good rise in his platelet count after the transfusion last night, they went to 69k!! His ANC is 5000!!! His Hgb is 10.4 today which is staying steady even with the fevers.
He has had a ct scan of his head and xrays of his lumbar this morning. He woke up the other morning around 4:30 and was crying with pain. He hurts in his hip/lower back area. Hopefully, we can figure that one out too.
Keep praying for all the children in here....too many, too young, and too sick!! Breaks my heart.
Camp was bittersweet! Nicholas was so excited to get there but just didn't feel up to his normal even though he really enjoyed John's session on karate! Overall, he had fun but was so sad when we left. He just didn't want to leave at all. He huggged everyone bye and only smiled when Alessandra hugged him! He was smiling for Mary and Julia and was so please to see them, Mary made a surprise visit just to see him. She and Julia are both so sweet! They talked of starting a NB fan club! LOL!
Please contine praying that we find out what is going on with Nicholas. It's evident he has infection somewhere. Keep everyone else in your prayers as well.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, August 13, 2009 11:22 AM CDT
Hello,
One guess where we are!! In the HOSPITAL! at Cincinnati! Nicholas developed a high fever and we made it in to the hospital around 6:30 yesterday evening! He was getting more congested and I knew he was getting sick! I called ahead and the ER visit went pretty smoothly but was so slow!!! We finally moved to the room around 11:30"!! They began antibiotics in the ER and they are working for he didn't develope a fever during the night. His lung xrays show developing pneumonia! He is coughing up lots of junk! He was off his antibiotics for 2 weeks! and here we are again! I do believe we have caught this one early enough to get out of here soon!
He gets his G-J tube changed during this visit too! He is also scheduled for platelets and some x-rays. He is doing pretty good but extremely nervous! Please pray for him to relax and for him to get better! He definitely needs to get rid of this bug in his lungs.....
Please rem all the children in your prayers. There are many here in the hospital!
Miracles, Blessings, and Bear Hugs,
Donna
Saturday, August 8, 2009 2:41 PM CDT
Hello,
Nicholas and Spencer are having a ball! Days are full of action, games, and loads of fun. Don't forget lots of sweet volunteers! that cater to every whim and need! LOL! His Highness is in his glory! Joel is also at his beck and call and pouts when he doesn't jump when he says too! He is hilarious! He is feeling pretty good after a good nights rest last night and had a wonderful day so far! Tonight is the costume night and conned Joel into helping create part of his costume! I'm not sure what Spencer will end up being as he cannot make up his mind! Hopefully, we'll see this evening after the balloon release.
Please rem Austin in your prayers, he is inpatient but will hopefully get out tomorrow! Rem all the other children in your prayers as well.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, August 7, 2009 4:13 PM CDT
Hello,
We are all fine! Nicholas continues to hold on to his red cells and we have gone 4 weeks without a red cell transfusion! Whoooopeeee!!! We did get platelets in Cincy on Wed and that went well. His platelet count was 18k but we transfused to get his counts up for camp sunshine! Nicholas is so excited he cannot stand himself! Every time I would say...."We're on our way to Camp Sunshine! One more day..." He would just about squeal and last night he said, "Mom, don't say that or I'll bust a gasket!" Yes, he is a hoot and already has Kristin at his beck and call. She is one on one with him and that is a huge relief, knowing he is assigned to one person. She will keep me posted if he needs me. He is a social butterfly and has spoken to everyone! He saw his true love and told her he loved her!!! He told me "It embarrassed me to embers!" Kristin was laughing at him! Spencer is having fun too, he was happy to see Casey!
It is good to see everyone and we are happy to be here! Nicholas has been through so much we are definitely happy to be here! He is elated to be here! He has been all sacked out on the bean bags!
So far so good! Continue the prayers and rem all the ones in the hospital that can't be here!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, July 30, 2009 11:27 AM CDT
Hello,
Nicholas is doing pretty good! He is complaining of lower back pain first thing in the morning. His lungs sound pretty clear but he is still coughing up some pretty nasty junk at times. He isn't running any temps and for the most part is doing well. His platelets today were 8k, Hgb is 10
!!!! Three weeks in a row without red cells!!!!! ;) Wonder how long this miracle will last....yes, I still believe! His ANC is still 3016 and that is good in one way but I remain cautious. Hopeful but cautious is the continual war. Nicholas seems to be pretty fiesty with the nurses today so that is a great sign!
Spencer is with us today and yes, he is eating cheese pizza again! He got car sick on the way up this morning and threw up a couple of times! Rough way to start the day but we made it here and everything is going good.
Billie's dad is in JC and had his hip repaired this morning but having a rough time with the sedatives. Please rem them in your prayers, Billie is exhausted. Nicholas wanted to go see her!
We finally finsihed canning the green beans and ended up with 56 quarts! Dad really helped and I'm so thankful we were able to get them all canned!
Keep all the children in your prayers and the caregivers too.
Begging for Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, July 28, 2009 7:47 AM CDT
Hello,
Our hearts are broken this morning with the news of Dylan's passing. http://www.caringbridge.org/visit/dylanmoore
Please remember all the family in your prayers. They were in Minn for 275 days....Dylan is pain free but that doesn't stop the pain in the hearts of his FAmily, Dylan is at total peace but I think the FAmily is raging inside, hating FA, a disease that takes the lives of our children, robs us of time, hugs, kisses, and the joy of family. Dylan is free but we that remain are forever chained and bound to find a cure. Yes, we have the hope of seeing Dylan or our loved ones again and then we will all be free at last.
Nicholas is doing ok so far. He was really droopy on Sat but Sun and yesterday, he was feeling much better. He is now off his antibiotics and I've just got a feeling....no symptoms yet but I pray he doesn't develop any more infections anywhere. We've gone to camp on antibiotics for a couple of years now and will probably do so again. He seems to be pretty good right now though and yes, we'll enjoy every minute of it!!!
The other night he told me he was hopeful of living a long life. When I asked how long, he said, "At least until I'm 50!" I told him that we could ask God to extend him more life and that God changed His plans once for Hezekiah and added 15 years to his life! Nicholas asked, "God changes His plans?" and when I said yes, he wanted me pray for him to live longer. We prayed.
The boys helped me string and break green beans yesterday. We canned about 21 quarts and have about that many more to do. They looked so pretty last night and the boys were excited to see the finished product! As they sealed, we counted the pops and all of them sealed. I'm sure they are going to be delicious when the snow is falling!
Please remember Nicholas' nurse Billie's dad, Mr Stallard. He fell and broke his hip and is in tremendous pain. He was out in the storm the other night for over 2 hours and he is now spiking a fever. Please pray for him and for his family as they care for him.
Please rem the FA world, Alicia and Michelle are both inpatient and need a touch from the Lord for healing. Rem Sam as she struggles with GVH in her lungs. Tyler did get to go home and that is wonderful news. BJ is also preparing for BMT, please remember them.
Begging for Miracles, Blessings, and Bear Hugs,
Donna
Friday, July 24, 2009 7:53 AM CDT
Hello,
I keep wondering if we have done enough for Nicholas. We have tried every known medicine, that we felt was safe, to boost his marrow and none of it has worked. What else is there? I wish I knew! I wish I had a miracle to give him. That's the hard part, Moms and Dads are suppose to fix everything, make everything all better but we cannot. Our hands are completely tied and we have to accept God's plan in Nicholas' life as well as our own lives. God's plan is heavenly, ours are only earthly, God's plan is forever: eternal happiness, our plan is only temporary and gratifying for a few seconds. God's plan is best, not our will but God's will. Please pray that we can accept God's plan with grace.
Why all the deep thinking you ask? Nicholas. He is asking and telling what he thinks is going on. He said, "You know my immune system cannot fight off stuff anymore and I'm afraid I won't get better." He wishes he weren't so sick and remembers the time he wasn't. He said, "I wish I could reverse time and go back and see the dogs when they were puppies and I wasn't so sick." He thinks he won't live to get a job of his own. He said, "I've lived for 10 years Mom and surprised all the doctors haven't I?" He wanted to know if he had surprised me. I told him "No, that God knew my hearts desire and pray for him everytime he is sick and that I have enjoyed every second of these 10 years!" I went on to highlight all the fun times we've had and he chimed in some and smiled. A 10 yr old boy shouldn't be worrying about all of this! He shouldn't wonder what kind of casket he should have or if he is going to die. He keeps asking what kind of job he will have, "What can I do with these hands that I have?" He is wise beyond his years and the conversation last night was like talking with an adult. He just knows how he feels and its not the best!
Spencer was in on the conversation as well and I explained about God's plan for all of us. This conversation actually began on the trip to the hospital for his platelet yesterday and continued after we arrived home all evening and into bedtime. Explaining the power of prayer, how God answers prayer, sometimes He says Yes, No, and Wait! Spencer told Nicholas that he had been praying and that God hadn't answered his prayer! I later asked Spencer if he was praying for Nicholas to be healed and he said yes. I told him we had been praying for 10 years and sometimes it isn't in God's plan to heal everyone that is sick. Sometimes He calls them home to Heaven by sending angels down for them. Spencer said, "Yes, there is a giant stairway that the angels come down!" This conversation left me drained and I didn't even scratch the surface on here! I told Nicholas I didn't like to talk about it but I knew he needed to. He looked at me so straight and I knew he wanted the truth but its so hard to have these conversations. I try to keep them light hearted and it takes everything in me not to cry in front of him. He told me that his greatest possessions on earth where his family and I couldn't hold back the tears.
Begging for Miracles, Blessings and Bear Hugs,
Donna
Thursday, July 23, 2009 11:19 AM CDT
Hello,
Nicholas is getting a platelet transfusion right now! His platelets were 11k, Hgb 10.5, and his ANC is 3192! I'm not sure why his ANC is still staying so high unless he is continueously fighting something! He seems to be much better lung wise but is still coughing up some junk! I won't go into details like color and texture....! LOL! Let's just say its not pretty! He seems to be in a pretty good mood today. He has been on the grumpy side in the last few days. I still think he is going to have a major infection that will rear its ugly head in some form or fashion! He usually takes twice as long to heal or get over something but his ANC doesn't stay this high! His little system is definitely still fighting! Maybe by next week it will be down but still high enough to fight off normal germs! Yes, I want it all! I want my cake and icing and be able to eat it as well! LOL!
Spencer is with us today and just hanging out with Nicholas doing crafts and eating pizza! He is a sweetheart!
Continue praying for all the children/adults in treatments, transfusions, and transplants. Rem Darrell, Jeff's brother as he prepares for his lung transplant and we're not sure when that is going to happen!
Begging 4 miracles, Blessings, and Bear Hugs,
Donna
Wednesday, July 22, 2009 1:05 PM CDT
Hello,
First, Nicholas is doing much better. He has improved a lot! I'm thankful for that! Hopefully, he will stay well enough from now until after camp at least!
Mamaw did have more testing yesterday and she does have a total blockage on the right side of her carotid artery. The left side is 70 percent blocked as well. She goes back to the dr weak after next and we will see what they may or may not want to do then. She is very weak at times and trembles but other times she is fine and will walk without her walker! Again, we are thankful that for each day we have now and know things could be a lot worse!
Congratulaions to Gma Mary on the birth of her grandson, Logan today! Glad all is well with Becky and Logan!
Please rem all the children in your prayers in bmt, treatments, and/or transfusions....
Our hearts go out to the family of Olive Cantrell during the loss of another mother, a neighbor, and a friend.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, July 17, 2009 8:12 AM CDT
Hello,
Nicholas did well with the platelet transfusion yesterday. I started his Linezolid yesterday eve and he did well with that, no nausea at all. Please help me pray that this antibiotic is the one he needs to clear up his lungs. He seems to be feeling ok, just a little droopy. We went to visit Mamaw after we got back from JC and she read him a story. She did much better reading this time than the other day. She was walking without her walker too. She is improving for the most part and I'm thankful that things are as well as they are. Thanking God for every day blessings and for each day we are all together!
Rem all the children and their caretakers in your prayers. Dylan needs a touch, he just got off the ventilator again but needs total healing, Alicia was running a temp again, Sam was still inpatient last time I heard on her, Delia is doing great!, Michelle is really sore but healing pretty good. I'm sure there are more so pray for all the children in treatments, transfusions, and/or transplants. Rem Jeff's brother Darrell as he is preparing for a lung transplant.
Begging 4 Miracles, Blessings, and Bear Hugs,
Donna
Thursday, July 16, 2009 10:45 AM CDT
Hello,
Nicholas' platelets are 8k, Hgb is 11.3, but his ANC is 3127 and red flags are going up, up, and up! He is definitely continuing to fight something and we are not treating it. We are going back on Linezolid for 2 weeks and increasing his tobi nebs to twice a day. If this doesn't work, we will go back on more iv antibiotics. His x-rays today reveals no change from last week. Meaning, his lungs aren't completely cleared yet. I could have told them that with the amount of secretions he has been coughing up and they are turning yellowish greenish! He just takes a longer time to get over infections than a person with a normal immune system. His white count is responding, which is great, but it is too high for his "normal!" We want him clear for Camp! I did say if he didn't clear up, we wouldn't be going and he heard me! He said, "But I'm getting better Mom!" He would push to his ultimate limits just to go to camp! He's just tired but continues to fight.
Spencer came with us today and had his normal pizza for lunch! LOL! He is going to turn into a walking pizza!
Continue praying for all the families that have a loved one taking treatments, transfusions, and/or transplants. Pray for Mamaw as she goes for more testing next week. If the carotid artery is completely occluded, they won't do anything. If not, they may do surgery if her health will allow. She continues doing pretty good for the most part.
Begging 4 Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, July 15, 2009 7:27 AM CDT
Hello,
I went home to a little boy that sounds like he is getting congested again. He is not tolerating his antibiotic as well as he should but we are getting some in and its staying down. That's progress, I guess, but is it enough to get him well? He is still coughing up lots of junk. I just hope and pray he gets over this completely. I do not want to go to camp sunshine with him sick. Yes, there are drs there that know him but we just do not want to be in the hospital at all, especially there! That is suppose to be his fun time, not hospital time! If he doesn't get over this, then we will not attempt to go. No, I haven't told him yet but will wait until we get to Cincy for their evaluation the week of and go from there. We will try to incorporate some fun in this trip if at all possible. It's so hard to coordinate all of this, not knowing if he is going to feel up to it. We will do what he can do and go from there. Rest when he gets too tired and stop when we have to. He just keeps pushing himself and does well under the circumstances and then, he will just lay his head down. He says, "I'm tired!" when you ask him what is wrong. It's heartbreaking. I'm so thankful he is a little fighter! He was feeling droopy yesterday evening and then was trying to act perky so he could go with Dad to operate the backhoe! He is such a trooper but I know he is pushing himself.
Here I am fighting a totally different battle than most but we all are having to make major decisions. Just to show you some of the things we have to consider in the FA world:
Bug repellant? we cannot use the ones with DEET in them because of cancer issues;
Sunscreen? again which ones are safe that do not cause cancer to protect our children from the cancer causing effects of the sun!!!!;
Lakes? Do we let our children swim in the lakes? Is their ANC up high enough? Do we even let them even if their ANC is high? Is it safe enough?
Grilled foods? Carcinogens in the grilled foods are bad for our FA children but they would have to be heavily charred and eat large amounts in order to cause cancer but we do not even want the least amount in our children that have a much higher risk for cancer! Also the fumes while grilling is another story! We keep our children away while the grill is on!
Gasoline? We try not to fill up our vehicles while our children are with us or take them away from the vehicle while it is being filled up! Gas fumes cause cancer!
Cigarette smoke is another NO-NO! Second hand smoke is another!
Just to name a few of the majors! Then, we go to the medicines! Lots of the medicines can effect the bone marrow or suppress it and we have to stay away from lots of antibiotics or any meds that will lower the platelets.
So you can see the issue of CANCER is very real and foremost in our thoughts and actions! Some issues are a given but others have to be weighed in our hearts and minds. Is the risk vs the fun for the child, risk vs quality of life, risk vs the mental impact to our child worth it? Do we just let them live and put the risk out of our minds? We do not want to intentionally harm our children in any way but sometimes they just need to have fun. Yes, the risks are there and very real but each of us have to make the decisions based on OUR child. We know our child best and what is risky for my child may not be that much of a risk for yours. Nicholas is fighting hard and I can't take any risk with him. He did wade (because he doesn't swim) in the lake and yes, it was worth the risk! "I had so much fun Gommet!" That's all I need to hear!
Then, we go to the siblings......"Why does he get to do it and I can't Gommet?" You know the rest of the story! It's hard on the siblings as well.
Please remember all the families that are dealing with a sick loved one. We all need strength, courage, grace, comfort, love, understanding, patience, and sleep! Rem the ones that are getting treatments, transfusions, and/or transplants.
Begging 4 Miracles, Blessings, and Bear Hugs,
Donna
Monday, July 13, 2009 6:45 AM CDT
Hello,
We did get out of the hospital on Thurs after another platelet transfusion. Yes, that was two in three days. His counts had dropped and we knew he would need more to carry him over to this week. He is feeling some better but not bouncing back like normal. He is still on Bactrim but I can only give one dose a day. If he gets more than one dose a day, he goes right back to vomiting and diarrhea. His lungs sound much better though, only a few gurgles. He is still coughing up some junk and that is a good thing!
We did make it to the lake but it was too cool to get a boat and he was disappointed. After it warmed up, we did take them to the beach area and they had a ball. He waded in the water and dug in the sand. They made lots of friends and one family was from Fredricksburg. They had four girls and Spencer and Mirriam really had fun. Nicholas wore himself out really quickly though. He just sat down and we took them back to the cabin. Overall, it was ok, but too short! We needed a week of nothing to do. I think we or I was just too tired to really enjoy it and Nicholas wasn't well enough to benefit from it fully. Even yesterday, he didn't feel very well and would cry at the drop of a hat. Hopefully today he can rest and not have to put up with all of us! LOL!
Spencer enjoyed himself tremendously! He is a little water dog and stayed in the water the entire time. He will invite himself to play with just anyone! LOL! He played frisbee with one family and became friends with their son. Then, he played with all the little girls or any of them that would play with him! Mirriam's dad took the boys on a kayak ride and they loved it! The trip was some fun at least.
Please rem all the children in your prayers that are in treatments, transfusions, or transplants. Rem Michelle as she is recovering from surgery. Rem Nicholas in your prayers.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, July 9, 2009 9:02 AM CDT
Hello,
We are still inpatient! Hopefully, we will be getting out of here! Dr K says what is growing now is very commmon and could be grown from tap water! He has taken him off all the antibiotics except for one! I think Nicholas isn't tolerating them very well. They are making him nauseated and his face is flushing. Hopefully, he will get better once we finish them all! He is doing some better. He still is a little hoarse but that could be viral. He has been pinching everyone with his toes! The nurses and fellows have gotten a kick out of "his claws!" I told them he was a crab! He is strong in his feet! He is a total hoot and has had a ball with them! He is feeling much better. Hopefully, we will get out of here today and head toward the lake for a little family fun! He is excited about that! I def need a vacation! A long one at that!
Mamaw goes to the dr on Monday to find out what they are going to do (if anything) in her situation. She is doing pretty good for the most part. We thank God that things are as well as they are! I know they could be a whole lot worse! God's grace is sufficient.
Rem all the children in your prayers going through treatments, transfusions, and transplants. Rem Michelle as she recovers from surgery.
Thanking God for Miracles,
Donna
Wednesday, July 8, 2009 8:14 AM CDT
Hello,
We are back in the hospital AGAIN!!!! Nicholas just could not tolerate the Bactrim via G-Tube! He was vomiting it back up and then it cause him to have diarrhea. He was getting weaker and weaker. I brought him back in again yesterday and all the tests were repeated. They are checking him for c-diff. He was in lots of pain in his tummy last night. His platelet count was 4k and he had to have a platelet transfusion. He was a little dehydrated and they begin all antibiotics via his PICC line. I can tell a difference this morning! He is feeling a little better and is smiling and playing with the drs and staff. He is a little on the fiesty side! I love FIESTY!
His platelets this morning are 40k, his HGB is 7.8 and will probably need red cells by tomorrow. Overall, he had a good night. I wouldn't let them wake him just to do his vitals. He slept well. I didn't get much sleep where he was so hoarse, I was afraid I couldn't hear him. He does have some of his voice back. I cautioned him yesterday to try not to talk to rest his vocal cords. He is very impatient and gets so frustrated when I don't understand what he wants. I tell him I'm trying to understand him and he becomes contrite immediately and pats me on the arm. I can guess for the most part but sometimes he tricks me! He couldn't do anything but whisper yesterday and he has to really put forth effort to say something today but he is doing it! His x-rays look much better so he is on the mend, it's just taking time and the right mixture of antibiotics.
Keep praying for us and all the children in treatments, transfusions, and transplants. Rem. Michelle as she is in surgery today.
Thanking God for Miracles,
Donna
Tuesday, July 7, 2009 7:11 AM CDT
Hello,
Nicholas continues to be hoarse and so croupy. I gave him his antibiotic last night and he ended up getting so sick that he threw up. I'm not sure how much he kept down but hopefully some of it stayed down. He threw up again this morning and it had old blood tinge in it. I'm sure his tummy is irritated from all the meds. He is so sick. He is whispering this morning and wants to know when that junk will get off his vocal cords. I told him they were irritated from him throwing up too. He just fell back in the bed! He wants to go to the lake this week and wants to be well so bad. We will probably still go even if he is sick. We will be closer to the hospital if we need to go there. Hopefully, he can still have some fun. Please pray that he is well enough to have lots of fun.
Mamaw is still about the same. She was really mad because the physical therapist was coming to visit her! It was funny. She called me and wanted to know who was responsible for setting that up! I told her the drs wanted her to strengthen her muscles! Little Ms Fireball said she could do her own exercises! I love seeing her fiesty!
Spencer is still fine. He has been playing in the lake at Camp Bethel and said it was cold yesterday! He seems really tired and goes to sleep every evening on me! He hasn't slept well in the last couple of nights either. I'm wondering if he is worried about Nicholas. He seemed surprised when Nicholas was in bed early last night. Nicholas was just so tired. Spencer keeps asking Nicholas why he is so hoarse!
Please rem all the children in treatments, transfusions, or transplants. They really need your prayers. Rem Michelle as she goes for surgery on Wed. Rem us.
Begging for miracles,
Donna
Monday, July 6, 2009 8:15 AM CDT
Hello,
Nicholas is now growing another bug called Stenotrophomonas maltophilia from the culture on the 2nd! They are adding another antibiotic to the mix! All these antibiotics are going to wreck havoc on his little system and will probably get c-diff! I'm not having a pity party, it's just the facts, reality. I just have to be aware of his symptoms and pray hard that he doesn't get it! Please help us pray that he doesn't! Pray the antibiotic gets rid of this bug and heals him completely. He coughs so hard and it scares me!
*********************
Happy 4th! We had a pretty good day overall! Mamaw kept saying...."I'm not coming back down here any more, I eat too much...I'm stuffed!" It was so funny! She is doing pretty good for the most part. She does have one carotid artery that is almost totally blocked. She will go to the dr soon to find out what they will do or what can or cannot be done. It's no wonder she had a stroke. This ultrasound was a repeat from 8 months ago and we feel there was an error in the last report. Who knows!? It is aggravating that is for sure. She did get to go to church yesterday and for that we are all thankful. Please continue praying for her.
Nicholas had a hard time breathing yesterday. He is more congested and croupy sounding. He almost has laryngitis. We kept him home yesterday out of the dampness and he just acted like he felt so bad, really droopy, no energy, and just short of breath as the evening approached. He is still on antibiotics so it has to be viral unless he is developing something that the antibiotics aren't covering. Sunday he said, "Mom, God has let me live 10 years!" I replied, "Yes, we have been blessed for 10 years...wait...Nicholas....you are almost 11 years old!! 10 years and 10 months!" He just smiled so sweet. My baby will be 11! Yikes! Where has the time gone?
Spencer is doing good, playing with his puppy, Christopher Columbus, aka CC, who is at Papaws house until Nicholas ANC is higher. CC is a mixed breed, beagle and collie. He is a begollie!!! LOL! or a colleagle! I like begollie!! He is rotten and the boys were pretending he was a cow. They were herding him here and there! Too funny. I think they were too rough for him and he hid! He is a sweetie though and Spencer enjoys him.
Rem Pat Strouth's mom, Edith Carico's family in your prayers. She passed away yesterday. Please rem all the children in your prayers that are going through treatments, transfusions, or transplants. They all need your prayers.
Begging for Miracles,
Donna
Thursday, July 2, 2009 12:06 AM CDT
Hello,
Nicholas is getting transfused while Spencer watches! Nicholas woke up by a kiss from him this morning. It was just precious!! Then he announced that he was going with us for transfusions! He went with me to Sam's and was fascinated. Of course, he wanted everything! No, he didn't get it! I'm a mean mommy! ;0)
Nicholas' counts were Platelets 25k and Hgb 9.2. I don't believe they are correct but if they are I'm thankful! He was white as a sheet this morning. He is still coughing so hard that he throws up and usually he messes on himself. Whew! We made it to Norton before we had to stop and clean up! Then, Spencer got sick and threw up as well! I know! I know! Only we could have so much going on and then add to the bowl of miseries! LOL!
Nicholas had several coughing spells during the night, usually around 2:30 and 6 am. I'm still giving breathting treatments during the night too. He coughs so hard that I'm afraid he will rupture a blood vessel and I'm glad he had platelets on board. They are going to do a post tx count to see how high his counts go up afterwards. I'm not sure what can be done about it anyway!
Mamaw is going for more tests today and asked us to pray for her. She had a headache yesterday but woke up feeling much better today. She is more alert in some areas. She even caught some of my crazy jokes and laughed at the right time! She is walking sometimes without the walker but other times too weak and needs the wheelchair.
Please rem all of us in your prayers and all the children getting treatments, transfusions, or transplants.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, July 1, 2009 11:47 AM CDT
Hello,
Nicholas called me yesterday afternoon and said, "Hi Gommet!" I could have danced up a storm if I weren't so tired! He was so much perkier! He is still coughing up a bunch of junk but overall he is definitely on the mend! I thank God he has pulled through another round. They are adding another antibiotic to help him get well faster. Hopefully it will work and he can get rid of all the bugs! He is just a sweetie pie.
He and Spencer just hugged and petted on each other. You could tell they had really missed each other and played all evening long. Spencer will do crazy things just so Nicholas will laugh. Its so precious.
We still have Oreo, Mamaw's kitten. He is just the sweetest little thing. Baby Black Girl had her kittens on Sunday, th 28th the day we came home from the hospital. When we left, Nicholas said, "Maybe BBG will have her kittens while I'm gone!" Sure enough! Jeff lost count when he finally found them so we still don't know how many are there. We think there are 3 gray ones and 2 black ones! Nicholas is so excited he can't stand it! He wanted to see them but I wouldn't let him up in the loft where all the hay and dust was. I told him we would bring them to him like we did last time. Spencer brought him a gray one for him to see but that wasn't close enough for him!
Ms Sadie, I found the package you left for me and it was adorable. Thank you so much! You are such a sweetheart! The boys really like the changing lights and seeing Mary as well! I do have some photos that I'll try to upload or send to you. Nicholas' hated that he missed the last two nights of VBS.
Mamaw had a great day yesterday and a so-so day today. She is sleeping a lot. She is going for more testing tomorrow. Hopefully, it will show what is wrong and if it can be helped. Pray for her for good results. Pray for all of us as we are dealing with this. She is doing wonderful and we are so thankful. We are well aware that it could be a lot worse.
Please continue to lift up the children going through treatments, transfusions, and transplants. Rem Darrell as he prepares for a lung transplant.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, June 30, 2009 7:02 AM CDT
Hello,
Nicholas was out of bed for very short spurts yesterday. His heart rate was extremely high and respiratory rate was too. Ms Billie continued the breathing treatments and percussion treatments, and antibiotics. He was asleep when I arrived home and woke up when he began coughing again. He got up after another breathing treatment and went outside to play with Oreo, Mamaw Boggs' kitten. We kittensat for her while she was gone to visit Darrell. We went down to Mamaw's to pick up Spencer and Nicholas actually walked around outside for a while and then petted on Mamaw! Mamaw was having more headaches, weakness, and eye problems yesterday.
This has been one rough week! Mamaw's stroke, Jeff's brother Darrell in ICU and now needing a lung transplant, and Nicholas with pneumonia! Darrell suffers from black lung and his lungs have deteriorated to transplant stage. Please remember him in your prayers. His website is www.caringbridge.org/visit/darrellboggs
They sent him to St Louis, Missouri but he is back home now. They desire your prayers.
Spencer is enjoying his days at Camp Bethel. They get in the lake on MWF if its not raining. They take hikes and play most of the day in a huge gym. They are having a good time!
Please remember all the children in your prayers, some going through treatments, tranfusions, and/or transplants. Dianna and Dylan really need a touch from the Lord. Rem Alicia's gma as she goes for cancer surgery as well. Pray for all of us.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 29, 2009 7:21 AM CDT
Hello,
We are HOME! Yesterday evening around 8:30, we finally made it home! It took forever to get a platelet transfusion. I was peturbed to say the least. I ended up doing most of the work during the tx as well. I just wanted out of there! Nicholas face flushed up yesterday and he has been coughing his little head off! About every four hours, he has the major coughing fits during the night as well. I gave him breathing treatments and cold meds to help his cough. He gets so sick and throws up when he begins coughing. Bless his heart, he has been through too much! He has had 3 platelet transfusions from Thurs to Sunday. He isn't getting a big rise in his counts from the transfusions. Please pray that he feels better today and the antibotics kill the serratia that he is growing this time.
Mamaw began having headaches again yesterday evening. Pray that a good nights rest is what she needed. Sissy Bear has been taking care of her as well as the rest of the family. I can only do so much and have to accept that I cannot be there all the time like I think I should be! Thank God the rest of the family is stepping in and helping! With all of us, maybe we can stay afloat!
Rem all the children in bmt, treatments, transfusions, or transplants, they all need an extra touch from the Lord. Pray for us.
Miracles, Blessings, and Bear Hugs,
Donna
Saturday, June 27, 2009 9:41 AM CDT
Hello,
I think I forgot to mention that Nicholas was coughing up blood yesterday and he had to have another platelet transfusion. Yes, that is two tx in two days! His counts are up a little now. His platelets are 47, Hgb is 9.2, and his ANC is 1174. He is feeling some better medically but has the grumpies! His pneumonia is in the middle of his right lobe and he was complaining with his tummy hurting. Now, I know why! When he had pneumonia on his left side, he would say his hip was hurting! I guess the right side will be his tummy. ;) He slept pretty good and coughed some but overall, he slept well. He woke up this morning and said, "Good morning!" Then, after he was finished stretching and yawning, he said, "Peace!" I asked him what he meant by peace and he said, "Peace last night, the nurses didn't bother me!" LOL!!! I wouldn't let them wake him up to get a blood pressure! I guess that was the reason he got some peace!
When Nicholas found out that the child life dept was close for the weekend, he was sad. The Respiratory Therapist told him that when his children had the grumpies, they would just pick them off and proceeded to pick them off Nicholas. Nicholas didn't like it one bit and threw a fit crying, scrubbing his feet together, and just cutting a little tantrum! He just wasn't feeling good enough for any jokes! He did accomplish something though, he coughed up a bunch of junk out of his lungs!!! After no TV for a while and an apology, he is smiling again!
He doesn't get to go home today but maybe tomorrow. He wants to go home, he misses his Dad! I think Spencer is in Dad heaven today, dressed just like him and going to Lowes with a measuring tape on his pocket! They are getting supplies to build a ramp for Mamaw! He took his puppy down to Papaws and will love playing with it! I'm sure Dad will have help though! Puppy help!
Yesterday, when we told Spencer that we were taking Nicholas to JC because he was sick, he said, "It's probably pneumonia again!" He was right!
Please remember all the children going through treatments, transfusions, or transplants. Rem all the care givers as well.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, June 26, 2009 4:33 PM CDT
Hello,
Well...it never ends on our funny farm! Nicholas has pneumonia and is in the hospital! No, I'm not kidding. He had a sore throat and ran a low grade temp but spiked this morning with a temp of 102.3. X-rays revealed the culprit. We knew he was too droopy to go to VBS and developed a full fledged cold. That is the first time he has ever missed VBS. He knew he was sick! He asked yesterday morning if I thought he would get back to VBS the last two days! He was a little hoarse and now he sounds really congested. Please pray for us!
Mamaw had a pretty good day! I think she showed out yesterday for the physical therapist because she wanted to take her home with her! She continues to nap often but overall she is improving.
Please rem all the children in your prayers going through treatments, transfusions, or transplants.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, June 25, 2009 12:50 AM CDT
Hello,
Nicholas HGB was 6.5 and he is getting 450 cc of prc, platelets were 6 and he rec'd platelets already. His ANC is 1080...not because it came up on its own but because he is sick. He has a sore throat and stuffy nose. He was really tired and run down and now we know why. They did a strep culture on him but it isn't back yet. He sounds really croupy when he coughs. I think its just a sinus infection and the drainage is making him extremely nauseated. I gave him a breathing treatment around 2:30 am and he was throwing up around 4:30 am!
And I just thought I was exhausted before! LOL! Mamaw continues on her journey. She was perkier yesterday but not feeling well today. We took her back to the dr yesterday and she changed some of her meds. She is completely off the Namenda. They adjusted one and also put her on Plavix. They are going to repeat her carotid and heart ultrasounds again. Hopefully, they will find out what happened or try to prevent anything else happening. She actually can hear and think better on a small scale since the stroke! Please pray for her and for all of us as we deal with this. We do have home health and an aide beginning this week. Mamaw said, "I'm so sorry that I'm sick!" Broke our hearts but that is just a little sample of how sweet she is. She kept saying, "Thank you all. Lord, I don't know what I'd do without my friends!" She is such a sweetheart.
Nicholas and Spencer were worried about her and I've taken them down for a while each evening after VBS. Nicholas wouldn't let her kiss him and I asked him why not. He said, "You know...she has that stroke!" I told him a stroke was not contagious! He, then gave her a hug and let her kiss him. It was so funny!
VBS has been fun this week for them! They have really enjoyed it. I have to ask Ms Sadie if I can do something for Nicholas!!! They are glued together! LOL! He aggravated Erika to pieces the other night. Told her she wasn't his girlfriend anymore! She pouted and pouted but he held fast to Ms Sadie! It was so funny! He walked off from her and then flipped his hip to one side like...."Kiss my tush!" It was hilarious! I asked her how it felt to lose out to your g-ma? She said, "BAD!" LOL! Yesterday evening, he wasn't so perky! He probably flipped that hip out of joint! It wasn't until later I found out his throat was hurting.
Please remember all the children in your prayer that are going through treatments, transfusions, or treatments. Pray for all the caretakers as well.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, June 23, 2009 6:57 AM CDT
Hello,
Mom did have a stroke. She is a lot better though and regained the use of her arm almost completely. She is home and was singing last night. Sissy Bear said that last week she complained with a headache and her right eye hurting. I think it was Thurs, Sissy Bear kept saying that she was worried about her and that Mom wasn't herself that something was wrong. Then she perked up later and seemed ok. After she took her meds on Sunday, she had another weak spell and the ER dr said he thought it was a combination of a reaction to Namenda and the stroke. She definitely had a difference in the ct scan from Oct to now. This is actually the third episode she has had while on that medicine! The dr said he could keep her in the hospital and I asked what they would do to help and he said give her aspirin!!! I told him we could do that at home. She is already taking a daily aspirin anyway. She does look different out of her left eye and her depth perception is way off but other than that she seems to be ok. She does hold her head more to the right and that is the side the blockage is on. Right side of the brain controls the left side of the body. Mom is one tough bird and someone mentioned the fact that she would need physical therapy for a long time and she said, "And I might just pull out of this and surprise you!" I told her I hoped she did surprise us all! She was singing last night and I called Sissy Bear to let her listen. She is getting lots of Jack lovings this week and Mom keeps saying, "Sharon has missed all of this!" When Sissy Bear called the other night, Mom thought she was home. She actually seems less confused to me now. She even told me she thought she had a stroke. Please keep praying for her recovery.
Nicholas was so worried about his Mamaw! I took him down there last night after VBS and he was much more satisfied. He just watched her while she was singing last night and asked her if she remembered Amazing Grace and she did! She also sang, "The Last Mile of The Way" and I had to leave the room.
Spencer was happy to see Mamaw was ok too. He helped us get the equipment loaded up that we needed. He was just the little busy bee and helped set it up as well. He loved helping Sheena get everything ready.
Sheena has been a huge blessing and has stayed the last two nights with her Mamaw! We'll all take turns to make sure she is not alone. Keep praying for all of us. Papaw's knee went out on him and we talked him into going through the ER as well. Yes, it was very hectic! They just wrapped it and said he had sprained it! Whew!
Thanks for all the prayers and wonderful comments. Thank God for friends.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 22, 2009 8:29 AM CDT
Hello,
I'm exhausted! We think Mamaw reacted to one of her meds. She was lethargic and just about lost the use of her left arm. Please pray that this resolves quickly. She was some better late last night. Yesterday was a rough day to say the least! We ALL need your prayers. She has improved a little more this morning.
Nicholas had a good weekend. He went a couple of nights to the cub scout camp with Spencer. Fri night, he attended the last day of Camp Wild and they presented him with a certificate. He beamed! He was so thrilled. Everyone clapped and cheered him on! I am so proud of both my little campers.
Thursday, Jeff and I celebrated our 27th wedding anniversary! I told him, "What better way to celebrate our anniversary than at Camp Wild!!!" LOL!
Last night was the first night of VBS! They really enjoyed it! Nicholas has been looking so forward to it. Ms Sadie is looking out for him in every direction and I appreciate it so much! Thanks Ms Sadie for everything! You are just the greatest!
Spencer is in Ms Sue's class and she is the only reason he
was ok. He loves Ms Sue! I'm sure they will all have fun.
Please remember all the children in treatments, transfusions, and transplants. Ms Alicia is out of ICU, Michelle has appt thurs for her cancer surgery, please pray for her. Rem Dianna, Dylan, Tyler, and all the rest of the FA patients struggling right now.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, June 18, 2009 11:30 AM CDT
Hello,
Nicholas' counts are: Platelets are 8k, Hgb is 8, and his ANC is 660 and he is getting a platelet transfusion soon. He is feeling pretty good now. He was nauseated and threw up on the way here this morning. He just finished up his antibiotics and hopefully, he will NOT get sick again.
I've missed my baby so much this week where I didn't get to see him in the evenings. I'm going to try to take Nicholas to the camp out this evening so he can at least have some fun this week. He has enjoyed Sissy Bear so much! Spencer is getting a cold and sneezing. The pool party was cancelled due to rain and will be rescheduled next week but that is Vacation Bible School week. I'm exhausted to say the least. I'm a glutton for punishment evidently. LOL!
Keep praying for all the children in bmt or getting transfusions, treatments, or transplants. Keep the care givers in prayer as well.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, June 17, 2009 6:58 AM CDT
Hello,
We were at camp for a while yesterday evening and someone said that a tornado was heading our way! It was scary! They told us all to go to our vehicles and wait until the weather cleared. It was a severe thunder/lightening storm that came up suddenly! Thank God, no tornado. The wind was fierce though and Spencer said, "Mom, it looks like a tornado!" He wanted to sit in my lap but I told him he needed to buckle up! He said, "Mom, I love you, Dad, and Bub!" I was in tears at that point and held his hand! The storm swept through and when the rain lessened, he said, "Mom, God answered my prayers!" Thank you Lord! Some of the children there didn't have their parents and I'm sure they were scared. I checked the news this morning and a funnel cloud was spotted in TN and over 3000 were out of power in some areas.
Nicholas was worried about us! He and Ms Billie baked cupcakes that were really for Ms Billie's birthday. He told her he wanted to bake them for Dad for father's day! She ended up baking her own birthday cupcakes!! Nicholas just called and told her they were for her and I sang her the birthday song! She was surprised! Nicholas is still feeling pretty perky! He was up early this morning because he had a bad dream.
Remember all the children in your prayers that are going through rough times right now. Dylan, Sam, Westin, and so many more need a touch of God.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, June 16, 2009 12:22 AM CDT
Hello,
Nicholas is doing good! Great, as a matter of fact! He is chipper, playing, and laughing. I realy missed his laughter! He is a happy camper now and for that I'm so thankful. I love him happy.
Yesterday began Twilight Camp for the Cub Scouts. Yes, it rained on us and delayed some of the activities which resulted in a long evening and a short night! I'm sure Spencer is tired today and will be exhausted by the end of the week if we keep this time table up! He really enjoyed himself though and did really well. They will earn lots of belt loops this week. They are doing sports, crafts, BB Gun, and archery. He is now a Bear! He was hesitant to do the archery but tried it anyway. He scored really well with the BB gun. One little fellow hit the bull's eye 5 times! It was awesome!
I was going to take Nicholas if it didn't rain and I'm glad he wasn't with us last night! He was still awake when we arrived home! He wouldn't go to sleep until I'm checked his mic-key button. He thought it was loose but it wasn't. Dad had checked it and told him it was fine too. He said his PICC line was hurting and my heart fell into my feet! He straightened his arm and said it felt better.
We will go on Thurs for transfusions so please rem him in your prayers. Also, Michelle and Charisse are battling some cancer issues and really needs the touch of God. I was trying to think about how long Nicholas has been transfusion dependant and realized he has been transfusion dependant HALF of his life! I couldn't believe it! That just floored me......and made me really sad. He has the best attitude ever and tolerates everything thrown his way! He is a super hero!
Rem all the children going through bmt, treatments, transfusions, and transplants. Pray for all of us.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, June 12, 2009 11:42 AM CDT
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Hello,
We are in JC with Nicholas today. His platelets were 3k, HGB was 9.2, and his ANC was 630. He is getting platelets now. He was coughing up blood this morning on the way here but seems ok now. He is feeling so much better and the NP actually said that is the best she had seen him. He was in rare form. He and Ms Trish had used a mad scientist recipe and made "Toe Cheese Goop!" and made it brownish! Spencer suggested we bring it to Dr K and play a trick on him! Of course, I thought it was the best idea yet! LOL! Angela, the NP, took the brunt of the joke. Nicholas told her it was a poop specimen! She just looked at it and with so much doubt as to exactly what it was! Needless to say she was perplexed! I finally told her it was glue, water, borax, and food coloring! She knew then that she had been had! It was hilarious! She left it with Nicholas so he could give it to Dr K! We couldn't fool the main nurses though! It was funny! I think I needed that one!
Spencer has a half day today and tomorrow and then school is officially out! I still cannot believe this year has passed by so fast!
We have had a couple more deaths in our surrounding neighborhoods and they need your prayers. Nancy Adkins and Christy Dotson ?married name, have passed away and the Adkins/Yates and the Dotson families all need your prayer. Please remember all the children going through transplants, transfusions, or treatments. So many need a touch from the Lord, please keep praying for all of us.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, June 11, 2009 7:29 AM CDT
Hello,
Our friend's daughter Ms Jaime is leading the worship songs at East Stone Gap Baptist Church during the Families On Mission this week. We were trying to get together but our schedule has been hectic to say the least and we didn't even get to visit. They are leaving today and I wanted them to meet his majesty but it just didn't work out this time. Maybe the opportunity will present itself some other time and we will get together! I'm sure they had an amazing time while here.
Nicholas didn't get to have their party yesterday, it was rained out! It may rain this evening too but the party will happen tonight inside if need be! Nicholas made me take a photo of himself and Ms Trish and wants me to send her a copy. As she was leaving, he said, "Mom, make me a copy and I'll put it in my bedroom so I can always remember her!" She has been a wonderful teacher for Nicholas and we appreciate her so much. Thank you Ms Trish for all you have done to help Nicholas this year. Thanks for being so understanding, compassionate, sweet, fun, honest, caring, loving, and for being the best teacher ever! (sniff! sniff!) He has had a rough year and struggled really hard but he accomplished so much! He only made two Bs if I'm not mistaken and the rest were As! She will not be his teacher next year and we will miss you so much! We love you dearly! God bless you!
Spencer didn't have his Cub Scout pool party either. They just had a pizza party! Nicholas fussed saying, "I don't understand why not! I mean, it's the same thing, it's all water!" LOL! Spencer didn't want to leave as they were all playing! They did have fun. Spencer's last day is Sat! Yes, they have to go half a day Sat! He did really well this year too and we are so proud of him. He is such a sweetie! We love you Spencer!
Please continue remember the Hall/Dotson family in your prayers this week. The funeral service is Sun at 7 pm, with visitation from 5 to 7. Also rem all the children going through bmt, treatments, tranfusions, and transplants.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, June 10, 2009 11:44 AM CDT
Hello,
We have sad news today. Our cousin, Jennifer Hall has passed away from an apparent massive heart attack. Please keep her daughter Ashley in your prayers as well as her mother Martha Jane and brother Jeff Dotson. I'm sure they would appreciate your prayers. Everyone loved Jennifer, she was just the sweetest. She will be missed so much. She taught nursing and I'm sure all the students need prayer today as well.
Nicholas is doing pretty good. He actually woke up this morning with a heart burn and wanted half a rolaid. He only likes the yellow fruit flavored ones and just fussed and fussed because we cannot find them anymore. If you find any....please send them to me. I'll gladly reimburse you! That was one of the reasons he was fussing the other evening!
Yesterday was movie, snacks, and toe cheese experiments! They had a ball! This evening will be their last school day and its party time again with ice cream and games outside if the rain holds off. Thanks Libbey for the balloons, he called and loved them!
Then we were outside trimming some rose bushes and found baby cardinals in their nest. Of course Nicholas wanted to see them. Dad got the ladder and Nicholas was petrified at the top but managed to see them. They are different looking that is for sure. No feathers except small ones on their head and some on their wings! Spencer had no problem climbing up to see them. He is part monkey! He gets that from his Dad!!!! LOL!
Remember all the children in your prayers that are going through treatments, transfusions, and transplants. Don't forget to hug your child, kiss them, and let them know how much you love them. Every moment counts whether you realize it or not. Cherish every moment you have together and make each minute count.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, June 9, 2009 7:07 AM CDT
Hello,
I think I jinxed my baby for he was up at 5:30 am throwing up. I can't stand it when he is like this. I wish we could figure out what is going on. I can tell the nausea is diminishing but I want it to stop all together! I did get to lay back down with him for a few minutes and that pleased him. He just smiled so sweet. I cherish those moments, rubbing noses, kissing his little hand, and I get little pats on my face and nose. Precious.
Ms Trish, it isn't because of school! He would get sick every evening during school and we thought it was a nervous reaction but not at 5:30 am! He took his last SOL yesterday evening and is now homework free! He is one happy camper! I think Ms Trish has fun activities scheduled for him for the next couple of days. He just smiled really big!
I can tell Nicholas is much better because he is back to fussing about everything! It was so funny last night! He was fussing and fussing....about anything...if I do something wrong...He will say, "I can't believe you did that...You need to think!" LOL! Or if he is fussing about someone else he will say, "Geez, I can't believe they did that, I mean, why don't they think?" And he will go on and on....it's just too cute! I'd rather have fussing than fever any day! He is a little fuss budget! He loves to fuss at Sissy Bear too, especially if she is going to see "that little brat!" He is so jealous!
Spencer had his end of 2nd grade picnic yesterday! I did get to attend for a while. They had hot dogs and the trimmings. Spencer wanted me to show the children how to make a whistle with a blade of grass! Some came around and asked, "What are you doing?" LOL! Several tried to make their own whistles and some had never seen that before! Too funny! Simple fun is a thing of the past! It doesn't have buttons to push and no one is fighting in it, no bells just a whistle! I cannot believe this year is already over! Goodness, time is flying! I have 6th and 3rd graders now! Yikes!
Please remember all the children in your prayers. The ones in bmt, treatments, transfusions, or other transplants need your prayers. Rem the care givers as well.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 8, 2009 6:27 AM CDT
Hello,
Nicholas is feeling so much better! We came home on Saturday and he wasn't nauseated at all yesterday. I think the antibiotic we are on now is the correct one! I don't think he ever fully recovered from the episode in May! He kissed the vehicle when we left the hospital and couldn't wait to get home because......"Guess what is waiting for me at home?.........Baby Black Girl!" LOL! I expected him to say Dad and Bub but no, he missed his cat. He played and played with her. I wouldn't deny him his cat ever! He loves her so much.
He missed Dad and Bub too. They played and played. We took them fishing yesterday evening to a little pond nearby and they had a ball. Nicholas seemed a little tired but really enjoyed it.
Nicholas was transfused with red cells and platelets while inpatient and his counts rose some. His ANC went to 868 and that was good.
Continue praying for all the children and caregivers. Pray for Michele as well as Alicia, Dianna, Dylan, Sam, Tyler, Westin, and all the ones getting transfusions, treatments, or transplants.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, June 5, 2009 9:34 AM CDT
Hello,
Nicholas continued with a sore throat and high fever yesterday and we brought him on to the hospital. They admitted him. He isn't growing anything unusual in the cultures, just his normal. His platelets were 12 yesterday and 8 today, his hgb was 7.7 yesterday and 7.2 now, his ANC was 702 yesterday and 480 today. Yes, that is the difference a day can make in counts. He will get both platelets and red cells today. He is on several antibiotics and Dr K just came in and is taking him off some and adding different ones. He agreed with me on one of them that Nicholas threw back up yesterday. It lowers teh neutrophils and we do not need less of them right now! Bactrim was the antibiotic and I knew it suppresses the bone marrow, so I refused it this morning and Dr K agrees! YES! We will probably go home tomorrow on Linezolid and hopefully, that will help. His secretions are getting worse but he is on cool mist and isn't use to that! I think he will do better after he gets home on that issue.
He didn't sleep much because of all the fluids going in him. I finally got diapers after asking for them numerous times and he relaxed and went to sleep. He is feeing much better today.
I'm just tired and dealing with everything that is going on. Nicholas told everyone bye yesterday as we went down the road and I barely kept it together. That was the first time he had ever done that. Broke my heart. I know he is trying to figure everything out and it is a continueous process for him. He will work everything out in his own mind and drop pieces of information for me. I'm watching this process and it hurts. Horrible on a grand scale. I'd much rather he work things out though. We'll all have to work things out in our minds and process it as it comes. It is a neccessary evil.
Please pray for all of us and pray for the children in the same situation. Pray for all the ones getting treatments, transfusions, and bmts.
God's grace is sufficient in everything and every situation. He will help us through this and carry us each step of the way. "Thou knowest" keeps ringing in my ears and cries from my heart.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, June 3, 2009 6:58 AM CDT
Hello,
Thanks for all the ones that signed the guest book! We appreciate all your thoughts and prayers. Please don't stop praying for us!
Nicholas actually had a SOL test yesterday evening. We didn't tell him so he wouldn't worry all day long about it and it worked out really well. He only had a few minutes to fret and fuss! He came to me and lay his head against me and asked, "What if I don't do good on it?" I told him to do his best, to concentrate on it, and that he would do great! It took him a while to do it but hopefully he will at least pass it! He amazes me anyway and I don't really care if he ever takes another test!! In my opinion, SOLs have ruined teaching and taking all the fun out of it! They are so pressured to teach what is on the SOLs that they have lost focus on teaching! It has become "Drilling for the SOLs" all year long! He will be taking the science SOL on Thursday and we will be going for transfusion on Friday, if we make it until then. Nicholas asked me to see if he was hot and sure enough, he was running a low grade temp last night and again this morning. He said his throat was hurting. If he gets worse, we will have to take him to the hospital but hopefully we won't!
Spencer is still doing great! School is just about over and they will only have 6 weeks for summer fun! We don't have concrete plans and since the last episode with Nicholas, we probably won't be making any. I only thought it was hard to make plans with having one transfusion day a week but if we have to go more often, there will be no planning! We'll just have to squeeze some fun in between somewhere! We may not get Nicholas' beach trip in. Maybe we can find some mountain lake beaches! LOL! Spencer would love that as well! He and Ms Carolyn were in the creek creating a "Crawdad Baptizing Hole!" They had a ball! They caught a baby mud turtle and several crawfish! Nicholas watched from the bank but put them in a jar for a while. Yes, I'll post the photos!
Please continue the prayers for Nicholas and all the children going through some type of treatment, clinical trial, transfusion, or fighting for their life.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, June 2, 2009 10:18 AM CDT
Hello,
Nicholas did get platelets yesterday and stopped coughing up blood. He overheard Dr Kathy say that his little system just chewed up his platelets and asked, "Am I dying?" I told him no and explained that we would get him platelets whenever his cbc indicated that he needed them. He also asked me that before we left home. He broke down and cried again saying, "I want to be normal like you, dad, and Bub!" I explained that he had FA. He said, "I hate Fanconi Anemia! Who else has it?" I told him the ones at camp that I thought he would remember. He wanted to know if Alicia had FA because her photo is on the fridge. He wanted to know if any adults volunteers like Joel or Andy had FA. I'm sure there are a million responses I could have made but I know he wants the truth and I try my best to tell him the truth without telling him the blunt truth. He know what is going on based on how he feels and what he needs. I think he knows he is getting weaker and is scared. He told me last night that he had said a BIG night prayer. I asked him if he asked Jesus about his platelets and he said yes. I'm sure his counts will go back up now!
All this could be related to being immune suppressed when he was fighting that virus! OR he could be beginning to become resistant to the platelets. If that is the case, we are headed for trouble. IF! IF! IF! IF God doesn't delay His coming, we may not have to worry about a thing!
Just pray for us and mostly for Nicholas to recover, to get a few more miracles. Please remember Dianna, Dylan, Westin, Jo, Jacy, Alicia, Will, David, Emma, Alise, Tyler, and all the rest......
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 1, 2009 1:47 PM CDT
Hello,
We are back in JC....On Sunday, NIcholas had petechia, propura, and bruises all over his legs. I knew his counts had to be low and expected him to cough up blood at any time. This morning, sure enough, he did. We came and his platelet count had fallen to 3k. His HGB is 8.6 and anc is 525. He had a wonderful weekend and seems to be feeling good. They are washing the platelets now and will get transfused shortly. He kept saying he needed to be outside next to the trees. I asked him why and he said, "Because they make oxygen!" He was trying to take deep breaths and kept saying he need to be near a fan. I checked his oxygen saturation level and it was 96 percent and that is good. It ususally higher but I knew he was ok. He then began coughing up blood and that was what was obstructing his airway. He was ok after that but it scared me! I called and they said to bring him in. Hopefully, we will get to go home after he gets his transfusion.
Pray for Nicholas and all the others going through this!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, May 28, 2009 2:32 PM CDT
Hello,
Nicholas' counts are: Platelets are 4k, HGB is 7.4, and ANC is 540! He has already received his platelets and now getting red cells. He was really short of breath last night and extremely tired. He didn't have any SOLs because the test weren't in but will have them next week. I'm glad he is getting red cells and hopefully they will help him on his tests. I asked him questions on his science that he had just read and he couldn't answer me. I knew he needed some jet fuel aka packed red cells!;) They wanted to wait until next week but I told them I felt it would help on the tests and energy.
We brought one of the kittens to one of the nurses and he slept all the way here! Nicholas asked for ear muffs so he couldn't hear it cry but he didn't need them afterall!
Keep praying for all these children and their families that are taking care of them. Rem Sam, Tyler, Westin, Alicia, and two more children with new diagnoses from Ky!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, May 26, 2009 7:32 AM CDT
Hello,
We had a wonderful Memorial Day weekend. No fevers, no sickness, no hospitals and it was wonderful. Nicholas and Spencer are doing pretty good at the moment. The weekend was full of soccer, basketball, baseball, and the boys using their fishing poles to play with the kittens! I forgot the bubbles! They had a ball with the bubbles. I guess we hadn't blown bubbles in forever and they enjoyed it! I did take some photos and will upload them when I can. Today, I have an IEP meeting for Nicholas so today is going to be hectic. It already has been! LOL!
Nicholas also has a SOL test today. Please pray that he will do ok on it. If he concentrates really hard, he does well but I know it will depend on his red cells too. I admire him so much. It amazes me that he does as well as he does. He is doing much better with his homework, well, he isn't complaining near as much anyway! He cannot wait until school is over.
Pray that Nicholas' white count comes back up. He really needs to be able to fight off infections. Please pray for all the ones in bmt, treatments, or transfusions. The families really need your prayers. Pray for our nation.
Birthday Card Drive for Tyler, currently in Cincinnati for his 2nd bmt. He turns 12 on May 31st. Please send a card to:
Tyler Jenkins
C/O Cincinnati Children's Hospital
Room No. A-523
3333 Burnett Ave.
Cincinnati,Ohio 45229-3039
Waiting on Miracles, Blessings and Bear Hugs,
Donna
Friday, May 22, 2009 6:46 AM CDT
Hello,
Nicholas did get platelet yesterday but didn't need red cells! Thanks Holly, your prayers and mine were answered! His hemoglobin remained 8.8, the same as last week and I'm thankful they didn't drop..soooo no red cells yesterday! One week down and I wonder how long he will go on this transfusion! Three months without red cells is just a miracle, plain and simple. I'm thrilled we received a break that ended with a hospital stay but it was needful and welcomed. I did speak with Cincy and they said that even with other bone marrow failures, patients that are transfusion dependant do not have a transfusion that lasts for three months. It couldn't be the donor. It's definitely a God thing! Every time I think about it, my heart is thrilled.
His platelet count was 4k and his ANC was 437. I wished his white counts would go up just a little more so his ANC would go up above 500 at least. Right now, we cannot take him into a crowd and anyone that is sick cannot come to the house. I will have to put up my "Please wash hands" poster back on the door. Everyone ususally washes their hands anyway but the poster will help remind everyone to zap those germs. Nicholas knows that he cannot fight off germs well and was really sad when he couldn't go to Sissy's or Mamaw's yesterday evening. I told him Daddy Bear was sick and Mamaw is too. I told him that he needed to wash his hands more as well. He asked, "Can I die from it?" I told him that it would make him really sick and we'd have to go back to the hospital for more antibiotics. He already has two bugs, one that are resistant to Penicillin and one that is resistant to Vancomycin.
Yes, I'm getting worried but I also know God's plan is far above ours. Trusting in God is the key. I tend to put it all in God's hands and then try to help him out by worrying about things again. If I could only leave it in HIS capable hands, I would be a lot better off! This week I think I was totally drained, physically and mentally. A hospital stay is bad enough but then trying to stay strong for the boys is another story but when Spencer broke down it really zapped me. I tend to make it through the crisis fine and then the next week.....swoooosh, all the air is let out of the balloon and I'm dealing with it all. I can tell its taking its toll on me. Then, add the loss of another FA child and the apple cart broke down. It's very painful with another family member passes away and that is how it feels when you are in a close knit community of a rare disease, it hurts us all. Their loss is our loss, their pain is our pain, and their joy is our joy as well. Good news is shared just as the bad news is. It's a network of hearts bound by the common thread of FA.
Enough of my inner struggles, please pray for all the other families that are going through what we are and more! Dylan has a fungus in his lungs now and desperately needs your prayer, Alise is going home PTL!, Stacy's family needs your prayer, and Westin needs your prayer too. All the ones getting bmts, treatments, and transfusions need your prayer as well. God expects us to pray for each other. I really appreciate all the prayers for our family, we couldn't have made it this far without them. God is so good.
Praying for Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, May 20, 2009 6:44 AM CDT
Hello,
Our hearts are saddened by the loss of Stacy, a little 5 yr old that had his bmt in July '08. He came through bmt ok and his central line got infected and they pulled it. They put a port back in and it too became infected and got into his blood stream. He was on life support and his organs began shutting down. They took him off life support last night and he breathed on his own for half an hour before the angels carried him home. Our hearts are breaking for this family. I mourned for the family all evening long and made myself get out of the house even though I couldn't get them off my mind. I came back in the house and it was 7:15. God's timing in so perfect. When someone is on your mind, pray for them that is what they are needing at that time. Please pray for this family and Stacy's twin sister too.
It could have been us making that decision so many times. God has brought him through many, many infections. I realize the blessings we've had and the mercy of God to let us continue to be blessed with Nicholas' presence.
Michelle said that FA was UGLY. It is! It leaves a bad taste in your mouth just saying it! It causes too many deaths, heartaches, and sorrow. The children are precious but the disease is horrible. It takes life. We need a cure. We need help in funding research. Please help us by donating to:
Fanconi Anemia Research Fund
1801 Williamette St, Suite 200
Eugene, Orgeon 97401
You can send in a donation in honor of Stacy Honeycutt if that is on your heart. The famiy didn't know about the egroup or FARF and would appreciate it so much to know even in their sorrow, their son made a difference in the FA world. You can also send a donation via paypal to info@fanconi.org
Please remember Alicia, Dylan, Westin, Sam, Justin, Will, Jo, Jacy, and all the ones we don't know. Don't forget to pray for Nicholas and all the families of these children that are hurting today.
Desperate for Miracles,
Blessings and Bear Hugs,
Donna
Tuesday, May 19, 2009 6:55 AM CDT
Hello,
Nicholas is doing some better, had a little nausea yesterday morning but not any in the evening. He seemed happier but really tired.
Last night the questions began.......Spencer asked what a bruise was, which I explained. He kept asking more and more questions about platelets and where they came from which lead me back to bone marrow, what it was, its function and purpose. Later, while he was taking his bath, he kept asking for me to come in there. He said he wished Nicholas had millions of cells in his bones. I told him I did too. He then asked me how much bone marrow Nicholas had. I told him 0 to 5 percent if that much and what he had wasn't enough to make red cells and platelets but was still making a few white cells. He asked what would happen when the bone marrow stopped working. I told him that Nicholas would continue to get transfusions until they wouldn't work anymore. Keeping his head down, he asked, "When the transfusions don't work, then he will......?" I asked, "Then he will what?" He repeated the same statement again and I said, "Yes, he will baby." He asked, "When?" but before I could answer, he said, "When the Lord says so!" I told him, "Yes, you took the words right out of my mouth!" Later I asked him if it made him sad and he said yes and I told him it made me sad too but we needed to continue praying for him. He asked if he would get weaker and weaker and would we have to push him around in the stroller more. He finally used the word death as we continued our conversation and with tears in his eyes, he said, "I pray he gets millions of miracles!" Although my heart was breaking, I couldn't leave the conversation on a sad note and explained about the research that was ongoing with FA! I told him I wished I could discover the cure! He thought that was funny and said he could just see me with big glasses on and a white lab coat! I told him that is why we continue to raise awareness about FA and fundraise for FARF that the researchers have to have money in order to do their experiments! He was amazed that they used mice and zebra fish! That brought on a whole new conversation which lead to herbs and their healing effects! At the end of our conversation, sort of like the straw that broke the camel's back, Nicholas walked in, flopped against me and asked, "When am I getting a HUGE bag of red cells Gomet? I'm so tired!" I told him we would check his counts and if he needed them, he would get them.
Please help us and join 'Team Nicholas' by donating to FARF, 1801 Willamette Street, Suite 200, Eugene, OR 97401
We are desperate for a cure and without research, there will be no cure. Please put Boggs FAmily, or Team Nicholas in the memo. See if you can get 5 of your friends to donate as well! Maybe we could start a contest to see who can get the most friends to donate! That would be fun! It doesn't have to be a large donation but with everyone working together, it could be a big one! We need a miracle, do you want to help?
Praying for Alicia, Stacy, Dylan, all back in the hospital and need a miracle. Pray for all the ones in bmt, treatments, or transfusions. Pray for the families of the angels for God's comfort and grace. I also pray that you never have to have the conversation that I just had with Spencer last night.
Desperate for Miracles, Blessings, and Bear Hugs,
Donna
Monday, May 18, 2009 7:48 AM CDT
Hello,
We were so glad to be home! Nicholas was drinking water and it sounded like it was pouring down a crawdad's hole, he smiled, "That's the sweet sound of being Home Sweet Home!" He stretched out in his bed and said, "Gomet, It's so good to be home!" I think he really missed home this time more so than any time before. He kept missing Bub and Dad and the cats of course! He slept until 10 on Fri and 10:30 on Sat! I think he was just worn out! He is still having more signs of it reoccuring yesterday. He was nauseated this morning as well. He isn't running a temp though. I keep thinking it may not be a virus but the nurses have both had symptoms.
Spencer had a campout this weekend and got a bad sunburn. I put sunscreen on him but it was too late! I did get to take Nicholas and used a stroller to push him around most of the time. He was a little droopy and tired more easily but he had a ball! He and Spencer both hit the bull's eye twice with the BB gun. They both did wonderful and were so proud of themselves. Jeremy was there to spoil him as well and they would just sit around and Nicholas would show them what all he could do with his feet! He entertained them! We just let him handle the questions most of the time and he does well. I did show a couple of boys his mic-key button and explained what it was for and they thought it was cool to get his meds that way without the bad taste!! A couple of other boys couldn't believe he could play the Nintendo without thumbs! One of these days, Nicholas will balk at the show and tell. When he does, we will respect his privacy and just explain what they are without showing or embarrassing him. He will probablly show them himself though! He realizes he cannot do as the rest of them do and it makes him sad though.
Please continue praying for him and all the others having problems and issues. Please remember Alicia, Stacy, Dylan, Westin, and all the ones getting bmt, treatments, or transfusions.
Desperate for Miracles, Blessings, and Bear hugs,
Donna
Wednesday, May 13, 2009 2:35 PM CDT
Hello,
Childlife is with Nicholas and I came to update. He thought I was gone too long last night and cried for me! I was just outside his door! Bless his heart, made me feel horrible too. He is doing much better and we are going home tomorrow after he gets another platelet transfusion. His white count has basically stayed the same. He still has some diarrhea and nausea but much better overall. We decided it may be best to get fluids this eve and go home tomorrow. He is getting more congested and the secretions are thicker so Dr Kathy has increased his breathing treatments. The high fevers have settled down and the hightest it has been today is 99.0d.
He has been shooting the cna and nurses with his laser gun! He said, "I'm feeling much better, aren't I mom?" He also asked for popcorn and has eaten more than I thought he would! He is such a sweetheart.
Please continue praying for Stacy, Alicia, both are back in the hospital too. Pray for all the children in bmt, treatments, or transfusions. Pray for us.
Desperate Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, May 12, 2009 9:38 PM CDT
Hello,
We are still inpatient. He is doing some better though. Cultures are all negative except for this trach sputum and it will always grow something! That is a good thing, so far so good though. His counts have taken a big hit and he received a red cell transfusion today. I really expected him to perk up tremendously but he hasn't really. He is missing Dad and Bub. He will probably get to go home tomorrow, hopefully. His platelets went up to 45 after the transfusion. His Hgb was 7.6 and his ANC has fallen to 585. White count is the lowest it has been in a while. If his counts fall any lower, we will be in total isolation. He will be more susceptible to infections. Hopefully, after we get over this episode of unknown virus, his counts will recover. Pray they do.
His PICC line actually stopped up after the red cells and I just held my breath until we could get it working better. It is still positional at times, meaning it won't work unless he has his arm extended out and relaxes. He gets upset when we mention trying to flush it. He asked if he was getting a central line now. I told him NO! Hopefully, we will get that working better as well.
I'm exhausted, needless to say, both physically and mentally. Sleep deprivation is our normal way of life. I think I had actually gone around 40 hrs without sleep. I did dose off but Nicholas was so sick. Actually, it was longer than that! This is the sickest he has been in a while.
Keep praying for all of us. Spencer is dealing with us being gone but I'm sure he loves his Dad time too. We try to juggle everything and not deprive either one but we aren't perfect by no means. Pray for all the children going through bmt, treatments, or transfusion! That prayer alone will cover multitudes of people in our area and everywhere!
Desperate Miracles, Blessings, and Bear Hugs
Donna
Monday, May 11, 2009 9:32 AM CDT
Hello,
Nicholas is in the hospital or will be at some point today. He has been chilling, diarrhea, vomiting and high fever of 103.1...He is one sick little boy. Please say extra prayers for him. Spencer, we think has had 5th disease, he had every symptom. Pray for him too as he has testing this week too.
More later,
Desperate miracles, Blessings, and Bear Hugs,
Donna
Friday, May 8, 2009 11:26 AM CDT
Hello,
Yesterday after the transfusion, he ran a temp of 100d but it went down in about 15 min. His blood pressure was bouncing as well. I told him his Hgb dropped and he was MAD! Then, he asked me what if he needed blood. I told him we would get whatever he needed when he needed it! He seemed ok with that. Nicholas had lots of bruises on him and Ms Becky asked him why he had one on his leg. He said, "Mom hit me! I told her not to hit me there that it would bruise!" Yes, they were in the waiting room and some of the people giggled! I scratches his face accidently!! Then, the umbrella fell over an konked him in the head! I asked him what on earth would happen next. He laughed at me! So I guess, I will be arrested for child abuse! Who will bail me out? I still don't remember hitting his leg!!!
Now, Nicholas is complaining when he urinates so we have to take a specimen for screening and cultures. That may be the source of the low grade temp! Who knows!?
I was changing his PICC line dressing and he was complaining with it itching. He told me he couldn't wait for it to come out! I told him to stop saying that! He cannot have one put in his other arm. I told him he would have to get shots of Neupogen every day and IV once a week for transfusion! He said, "NO! Never an IV again!" He asked if he could get a central line. I told him yes! Then he asked me if they have to put him to sleep. I told him yes! He HATES to be put sleep and actually panics at the mention of it! Then, he looked at me and asked if they had to use gas to put him to sleep, which he hates as well. I told him if his PICC line wasn't working then, yes they would have to put in an IV or use gas. He said, "If they use gas, then I want to hook it up to my trach!" I looked at him and was speechless! I couldn't believe my ears! I told him that it would take a big brave boy to do that! He smiled really big and replied, "I'm growing up aren't I!" I could have squeezed him to pieces but I'd better not or I'll bruise him!!!!
Whew!
Spencer woke up really congested this morning. Hopefully, he will feel better this evening. He is still testing this week and next and I'd hate it if he were to get sicker and miss school. He is rotten! I can see him growing up more and more each day. He is such a sweetie! Nicholas couldn't ask for a better brother!
Remember all the children in bmt, treatments, or transfusions. Remember all the one that have had their bmt as they battle the possibility of cancers. The bmt corrects the marrow but not the cancer end of FA. Nice future to look forward too huh? You have to take one day at a time and get the most out of each day. If cancer comes, then deal with it then. God is still in control and knows what HE has planned for us. I trust God for our future.
Desperate 4 miracles, Blessings, and Bear Hugs,
Donna
Thursday, May 7, 2009 12:07 AM CDT
Hello,
Nicholas' Hgb is 8.8, platelets 4, and ANC is 1120! :(
He still doesn't need red cells at this time though and for that we are grateful. Next week may be a different story! 11 weeks without red cells! Whoooopeeee. A long break and one that we hope repeats with the next red cell transfusion, that would be wonderful! I'm amazed and think of the donor with each transfusion. Thanks for taking the time to donate so my child can have a chance for a new life! With each red cell transfusion, it renews his color, lifts his spirit, helps his heart return to normal, helps him breath better, and helps him fight off infections as well!
Will update more later. Keep praying for all of us and all the ones in the hospital, treatments, or transfusions.
Desperate Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, May 6, 2009 1:01 PM CDT
Hello,
Nicholas has complained with his tummy hurting this morning and told his nurse, "I don't think it's ever going to stop hurting!" I definitely think its viral. I did take him to Burger King to play last week and he may have picked up something there. He begged and begged. I really didn't want to take him but seeing his ANC drop I was thinking we may not get to take him later. Now I wish I hadn't!! He has petechia all over his face and ears. I'm curious to see what his counts will be tomorrow. Viruses, infections, colds, flu, will hit the marrow pretty hard causing a drop in counts. In normal bone marrow, it will recover. In a patient with FA, IF his bone marrow is working at all, the recovery is a little slower but they will eventually go back up. In Nicholas case where he is already in bone marrow failure, he would require more transfusions of blood to help fight the infections off. That could count for the drop in his hgb last week and we go tomorrow. I'll post as soon as I know.
Spencer woke up around 3 am wanting something to drink. He sounded really congested. We have noticed his ears turning red and have been on alert mode. I hope its not strep again, although it could be according to his breath! He has cronic crypted tonsils and gargles every night but if he gets strep, it doesn't help! He was out in the yard and got his feet soaking wet after the big rain yesterday! He wanted to jump in all the puddles but I told him to stop because it was too cool! Awww, I wanted to puddle hop too!
Nicholas is wanting to go to the beach. I do too! If only we could. We'll see. Its so hard to plan anything and can't afford to lose a deposit. If he gets sick, we would have to cancel. If his counts are too low, we couldn't go. If...... If...... If.......If a miracle happens, we could go.
Please pray for all the children in bmt, treatments, or transfusions. Rem Silas McCracken, he has been having problems and they think it is leukemia. If its not leukemia, I'm sure he would appreciate the prayers.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, May 5, 2009 10:08 AM CDT
Hello,
Nicholas was feeling much better by yesterday evening. He still had a slight temp but seemed ok. He didn't look as bad as he had been either so maybe he was just fighting a virus! Maybe his hgb will go back up as well. He cannot wait until school is over with! He will have some tests the first week of June and isn't looking forward them at all! I'm just amazed he can do as well as he does.
Spencer said he did well with his pals testing. We are so proud of him! He was proud of himself too! He will continue testing this week and doesn't have any homework! He just had to rub it in a little last night and Nicholas said, "Gee! Thanks for telling me that!" He is so funny! Spencer was up at 6:30 this morning! He is an early bird every day though! He will be tired this evening! He seemed tired last night and I was surprised he was up so early.
Please continue praying for Westin as he gets his chemo and radiation on his leg. Pray for all the FA children/adults getting bmts, treatments, or transfusions. They all need prayer. Also, pray for the caretakers.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, May 4, 2009 7:07 AM CDT
Hello,
We've had a rainy weekend! Yesterday, Nicholas got up in a wonderful mood! Then, within the hour, he began to get grumpy and wouldn't eat. He began chilling, terribly nauseate, and ran a low grade temp most of the day. By bed time, his temp was normal. I'm not sure what is going on so please pray for him. He has been looking bad, dark circles unders his eyes, lots of petechia, and been droopy all weekend. My instincts are on high alert and my heart has hit rock bottom. I'm just waiting.......
Spencer had a wonderful weekend with cub scouts and really enjoyed the Expo. He was exhausted! He ate all day yesterday so he must have played too hard and didn't eat much Sat! He is such a sweetheart! He and Nicholas really missed each other and they just snuggled and played together yesterday! It was cute!
Remember all the ones in bmt! Some doing well, going home from bmt, some still facing difficult days ahead and need prayer! Yes! There is power in prayer! God answers...maybe not in the way we think He should. I told Nicholas that his HGB dropped and this real angry look crossed his face for a few seconds. Pray it goes back up! It is difficult to explain to Nicholas when our prayers aren't answered. He asked me last night what his purpose was. I told him he was the best hugger in the world and full of love! He said, "Maybe I'm the chosen one!" I told him I didn't understand. He said, "Maybe I'm the one to tell everybody about God's love!" I told him he radiated love! He then said, "I doubt it though!"
Ro:8:28: And we know that all things work together for good to them that love God, to them who are the called according to his purpose. We are called according to God's purpose....
Praying for miracles, Blessings, and Bear Hugs,
Donna
Thursday, April 30, 2009 9:35 AM CDT
Hello,
10.2 is his hgb today....yes it dropped one point! Still....no red cells today and this makes 10 weeks! 2.5 months without red cells has been a wonderful break! Still a miracle, thinking about a body receiving someone else's red cells is a miracle in itself! It is an amazing process and life giving! It has sustained Nicholas for 4 years. His platelets are 6k and ANC is 1355, overall good and will get platelets today. He has had a wonderful week overall and doing good for now. He seems ok but was a little pale adn I thought his hgb had dropped some. Yes, I'm disappointed but thankful that the last red cells are lasting so long. He could possibly go longer on these red cells up until June 20...they live for 120 days! We'll have to wait and see what happens in the mean time.
Spencer is doing pretty good too. The cub scouts went on a hike yesterday and it was fun. He stepped on a hoe handle and hurt his foot during the weekend. His foot began to bother him during the hike but he was fine after the hike. He pulled his shoes and socks off and all was well! He will be going on another campout this weekend. Lots of campouts planned and he has earned several belt loops inwhich he is so proud of!
Please remember all the children in bmt, treatments, and transfusions. The caretakes need prayer as well.
Praying for miracles, blessings, and bear hugs,
Donna
Monday, April 27, 2009 7:11 AM CDT
Hello,
We had a wonderful, warm and sunny weekend.....gorgeous! Nicholas did get to go to church too! It was great! He really enjoyed it and playing outside for the rest of the day! Hayden came down and they all played and ate cantaloupe and cookies! Hayden really enjoyed that cantaloupe! Spencer wouldn't touch it and Nicholas just licked the salt off! They were all filthy, the result of a wonderful play day!
Teresa won the hgb contest and will get to deliver the hugs and kisses at Camp Sunshine! Stephanie, sorry you didn't get a chance to enter your guess but you made me laugh! Woman! I know lots read it but didn't take the time to write in the guestbook....I can tell by the counter on the bottom of the page! Wow! I know that was amazing but hey, I'm brain dead you know!
Remember all the ones losing their jobs, the numbers are growing! Also, the swine flu that is going around, remember all the ones that have been traveling, Robbie just came back from a missions trip and needs the prayer of protection over his family as well. Rem all the ones in hospital, treatments, transfusions, or bmts, they all need prayer. Dianna has had a rough time, please remember her. Keep praying for miracles for Nicholas.
The FA group did not win any part of the 100k given away from Hugh Jackman. If he didn't respond to Jo's tweet, he didn't read it! It made me bawl like a baby! Oh well, we'll keep trying!
More Miracles, Blessings, and Bear Hugs,
Donna
Friday, April 24, 2009 9:11 AM CDT
Hello,
Nicholas had a rough night with chills and nausea. His temp this morning was 99.1 so that was low grade. He has also been coughing up blood. Since no one guessed his hgb, makes me wonder if anyone reads the updates or just chose not to guess. Hmmmmm, if you guessed 10.9 you were right but do not get the grand prize of a 100k!!! LOL! Actually the grand prize was a hug and kiss from Nicholas and that is just priceless!! See what you missed by not participating! Tooo bad.....so sad!
His hemoglobin is 10.9 in case you missed that, platelets are 8k, and ANC is 2655. Yes, it went down again but he still does not need red cells...9 weeks with out red cells....a track record for him! I guess we will have to wait until June 20 to see for sure on his red cells! They live for 120 days so the time is up then! I guess I'm having mixed feelings, sad the hgb is dropping but happy he is still above transfusion range.
Pray that Hugh Jackman chooses fanconi.org for the charity to receive the 100k! Pray for all the children in hospital, bmt, treatments, or transfusions. Pray for all the families.
Hugh Miracles, Blessings, and Bear Hugs,
Donna
Thursday, April 23, 2009 7:02 AM CDT
Hello,
Time for an update! I don't have anything to update about which is the best kind, it means nothing bad is going on that I need to tell you! When things are ok with the boys, I have too much time to think and that is not a good thing!
Nicholas is doing good. He seems to be holding his own and we love it! It brings forth hope! Hope to begin planning some fun stuff for them. Hope that we can get to go on a real vacation. I really need a long vacation. I am about washed up! I need refueled, re-energized, rejuvinated, renewed, re-everything! I need a break. School will not be out until the middle of June! I know the boys will be thrilled to be out of school! Nicholas will be ecstatic!
Papaw plowed the garden and Dad has planted the potatoes. The peas are up and are doing much better than last year! Spencer is excited because we are planting cauliflower and broccoli! He doesnt' eat either one but he loves to help plant everything and always plants the sunflowers! Nicholas took a little hoe out and dug in the garden the other day! He loves it too!
We will be getting counts tomorrow....want to guess what his hemoglobin will be? Leave your guess in the guestbook and we'll see who is the closest! A contest! Well, its actually a test to see who really reads these updates to the end!
Please remember Eli, John and Denise's grandson, they have found a mass on a chest xray and think it is just a swollen lymph node, doing a ct scan today, so remember them. Remember all the children in bmt, treatments, and transfusions. Westin is getting some pain relief but needs prayer, Alise is having more tests, Tyler is going through number 2 bmt, Sam is doing pretty good, rem all the ones in bone marrow failure and planning bmts.
Hopeful Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, April 21, 2009 7:54 AM CDT
Hello,
Nicholas continues doing ok for the time being! He seems to have a pink tint to his coloring in his face, which is just awesome! I'll take pink any day compared to gray! UGH! It makes you realize just what you have been through. Looking back compared to now, pale as could be. It is amazing just what a little higher hemoglobin does! Dad always says I have on pink tinted glasses! He can see it now! LOL! I love pink tinted glasses! Everything is rosey!
Guess who I'm talking to right now? Yes, his beautiful voice is telling me there is another big gray cat outside looking at him! He gets so excited and loves cats. Those older kittens were in the box with the little kittens this morning! Dad said they were blankets for the babies. Nicholas laughed at that! Awww, the joys of animals. There are just too many stray tom cats running around our house! Time to give some away! Far away! Nicholas and I would have them all but not Dad! LOL!
Spencer is doing good too! He is just as happy as a coon in a cliff playing with the kittens. He has laughed and laughed at them chasing a little plastic fish on his fishing pole! He makes them go around in circles and fall over backwards! He is a hoot! Nicholas and Spencer played for about three hours with those fishing poles and the older kittens during the weekend when it was warm! They really enjoy it and I think they wore the kittens out because they had to take a cat nap! Too funny!
Please remember all the children in bmt, treatments, or transfusions. The families are struggling with long hospital stays and I know how exhausting it can be. Please pray for the caregivers as well. Remember Nicholas as we continue in this miracle. Remember Westin as he is battling pain in his leg. Dylan is facing more biospies as well. Tyler, as he continues in his 2nd bmt.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, April 17, 2009 10:40 AM CDT
Hello,
Nicholas' HGB was 11.2 today! Yaaaayyyyy, no red cells for 2 months now! Awesome! I did hope and pray they would be higher today but they weren't. I'm glad they didn't drop more....if only they can stay at 11 or above, I'd be happy. His platelets were 4k and his ANC was 2832. He does seem to be getting a cold and says his trach is sore! He is probably getting my cold or we are getting one together! Spencer was sneezing this morning too. Dad has allergies so he is sneezing all the time! Now, we are all sneezy bears! LOL!
Keep praying! Don't stop!
Sneezy Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, April 15, 2009 7:02 AM CDT
Hello,
Nicholas is still holding his own right now. He seems a little congested but overall is good. Well take 'good' anyday! Jeff will tell him his face looks flushed but I just laugh and say......."His HBG is up!" Now, if only the other counts will follow, we will be in seventh heaven! Wouldn't that be another miracle? I get a thrill running through my heart each time I think about it! I keep telling Nicholas that by Camp Sunshine we won't have to go for platelets every week! He said, "Mom, just pray that! God will answer!" Aww, the faith of a child. It's unrelenting, innocent, and without doubt! Believe! Can we throw off all the timbers of doubt that we are carrying and ask in faith believing, like a child? We definitely have too much baggage we are tugging along. Humble ourselves like a child. When our children comes to us with a broken heart and asks for something, do we refuse them? That's what God wants of us, total trust. And He wants us to ask. He already knows our hearts desires but He wants us to ask! He wants to comfort us, for us to curl up in His arms and rest, just like we love for our children to. God is so good. Aren't you happy you know Him and can call Him Father?
Spencer is doing good! Easter was wonderful but you know what? We didn't even hid eggs on Easter! HA! We had already hid the plastic ones earlier in month! I did get them a bible and they loved them. We also baked a bunny cake and Nicholas insisted on a chocolate one this year. We decorated its bow tie with crosses and easter decor. I'll post a photo. It was too cool for Nicholas to get out but I did get some photos of Spencer. He looked sharp! Spencer's cat Silver Bell had kittens and I guess in all the excitement we forgot to hide the eggs! I have never seen a crazier cat in all my life! She went into labor on the deck and I had just put her in a box and about 15 min later she had her first one! Then, she would see the other kittens running around and would jump out of the box and run to them and try to get them to follow her! She was so confused! She had babysat them forever and I guess she thought they were hers all along! It was hilarious! I told Carolyn that she would be carrying them to the box before too long! Well, that is exactly what she tried to do! They were too big for her though and they would run away! You talk about excitement! She would have a kitten and half clean it up, see one of the kittens, and then jump out and run to it! This continued until 3 were born! We borrowed Carolyn's cage but she wouldn't settle down at all. I had to put the original box inside the cage and then put her inside the sunroom. She finally settled down and had 5 kittens! But during the day, she won't pay much attention to them and I have to lock her up inside the cage every night just to make sure she is feeding them. I think we need to give the bigger kittens away, so she won't be as confused, as soon as possible. Please come and get one!
Nicholas was so excited and I took one inside to show him. He just ooohed and awwwwed over it! He loves kittens and wants to keep them all! NO WAY! I guess that's all for now! I'm tired from all that cat grannying! LOL!
Remember all the children in bmt, getting treatments and transfusions. Too many! Delia is doing wonderful. Dylan is holding his own but has a slight temp, Westin is having some leg pain and has a cast, Haylee is wonderul, Sam is doing pretty good as well. Tyler is back in Cincy going for his 2nd bmt. Rem them all and thank for praying for all of us but don't stop! We need prayer.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, April 9, 2009 9:41 AM CDT
Hello,
Hemoglobin is ......11.3!!!!!! YES, UP again from 10.7!!! 11.5 is normal, I thought it was 11, so needless to say we are extremely happy! 7 weeks in a row without red cells! We will definitely take this count! HA! Platelets were 9k! ANC is steady at 3364 with his white count being in the normal range. Praising the Lord from whom all blessing flow!
I cannot access Facebook..so if someone could post there I'd appreciate it!
He is risen! Miracles, Blessings and Bear Hugs,
Donna
Tuesday, April 7, 2009 7:22 AM CDT
Hello,
I forgot to mention about Nicholas' fall Sunday night! He was sitting at the bar and tried to scoot his stool back. He used his feet and pushed to hard against the bar which propelled his chair straight backwards. He threw his body forward, thank the Lord, and landed across the seat part with his body with the base of his ribs taking the impact. It knocked his breath out of him and scared him. I expected him to be black and blue but guess what.....on a tiny bruise! He did have one on his elbow and shoulder but they were small as well. I told him it was another miracle! I'm really so thankful that he wasn't hurt any worse. He could have been if he hadn't thrown his body forward, his head would have hit the floor! Ugh! I don't even want to think about it.
He did paint Ms Billie an egg. He painted it half purple and the other half pink with a red heart in the center! I asked him the other day how he was going to paint the heart. He said, "With a keen eye and a steady hand!" LOL! He is a hoot!
He still has little pink cheeks but no fever. I declare he hasn't had this much color in forever! He is holding true to his part of the bargain so far and not fussing about homework! Good job Nicholas!
Spencer is doing pretty good. He has a hard row to hoe! He just petted and petted on Nicholas when he fell. I know he worries too much about him but it cannot be helped. He wanted to play cowboys and villians! I got shot! He always dodges the bullets! He just wants to win at everything! It kills him if he loses. Life if full of ups and downs and he has to learn he cannot be the winner every time. Aw, life and the hard knock lessons.
Rem all the children in the hospital, bmts, or getting life supporting treatments and transfusions. Alise is doing some better but getting a rash. Sam is doing good too. Dylan has more tests this week, pray for awesome results. Delia is fantastic! This is the season for miracles, springing up everywhere! Isn't God awesome!?
Resurrection Miracles, Blessings, and Bear Hugs,
Donna
Monday, April 6, 2009 7:54 AM CDT
Hello,
Yes, we did get to Wal-Mart and I got them a couple of games. Nicholas LOVES his Spiderman game and just beamed when he saw it! I bought Wall-E for the ps2 and Spencer loved it! He really enjoyed it this weekend. They play half the time and don't do the game seriously! It is hilarious to watch them!
Spencer had asked for a basketball goal and Dad put it together for him. We all have enjoyed it! Nicholas tried his best to get a basket but never did. He came really close. He tired really quickly and came over to the window and talked to us. He then begin asking, "Why are my arms so short and Spencer's so long?" Dad told him that was just the way things were. Papaw's long arms had no problems at all! He and Spencer played and played! Spencer is guite good!
Nicholas' cheeks were rosey red last night! He had gone to Papaw's for a while to see the kittens and I thought maybe he had just played too hard! I'm not sure if he had gotten too hot or he has lots of red cells! I was thinking he had a temp but didn't seem to. He began sneezing in the middle of the night but seemed ok. That is the first time he has had rosey red cheeks without a red cell tranfusion in ...I can't remember how long ago! Ha! Has to be over 4 years ago!
Remember Tyler as he gets stem cells again to reboost his marrow on round 2! Pray that they begin making new cells as they enter his body today. Sam, has gvhd in her skin, pray that it clears up soon! Dylan is making platelets! YES! PTL! Alicia is doing pretty good, pray for her. Pray for Nicholas as well as all of us.
6 weeks of miracles, Blessings, and Bear Hugs,
Donna
Friday, April 3, 2009 10:49 AM CDT
Hello,
Well.......his hgb is ............10.7!!! Whooooopeeeeee! I told Nicholas and he just smiled and smiled like he knew something we didn't! LOL! He has had a pretty good week, showed signs of low platelets but other than that he is doing pretty good. His platelets were 7k. He will get platelets but not red cells! 6 weeks without red cells!!!! Red cells live for up to 120 days so they should last until May 20 IF he isn't making any cells but he has been using them up really quickly! His RBC is dropping but white count is still normal with an ANC of 3248! Great news any way you look at it! Wow! A month and a half without a red cell transfusion......definitely a miracle! God is awesome.
Spencer and Nicholas just hugged and kissed this morning. Spencer told Nicholas that he hoped he didn't have to get platelets. Nicholas said, "You mean red cells!" Spencer said, "No, I mean platelets and red cells, then you can get your trach out, your g-tube, out and all your tubies out." Nicholas just smiled. Spencer is a little worry wart! Just like his Mamaw though, so he comes by it honest. They break my heart talking about Nicholas' trach and g-tube.
Nicholas is bound and determined to go to Wal-Mart today! He even threw in a little...."I never get to go anywhere!" He really wants that game! I haven't had time to get it yet! We may just have to go if it is raining really hard! It is storming over here with high winds, chilly, and raining.
Please remember all the children in your prayer. Dylan, out of hospital, Sam dealing with GVHD, Alicia is home, and Tyler is back in hospital. Pray for Nicholas and for all of us.
Thanking you for miracles, blessings, and bear hugs,
Donna
Wednesday, April 1, 2009 7:16 AM CDT
Hello,
We are still all well. Nicholas is still plugging along and doing fairly well at the moment. He isn't showing any sign of paleness or shortness of breath! I guess that means his hgb(hemoglobin) is still up! I did see a couple of bruises but other than that he is fine. Why is it we need something tangible or visible in order to believe? These past 5 weeks without a red cell transfusion has given me hope, more than I've had in a long time. God knew we needd time without red cells so that Nicholas' ferritin level could drop and it did! That doesn't surprise me, I know beyond a shadow of a doubt that God is in control. HE is my source of strength.
Yesterday was parent/teacher conferences and I met with the teacher for Nicholas and Spencer. Nicholas pulled his B in math up to an A but went down to a B in reading and the rest were A's! He is awesome! Spencer made all A's and is doing pretty good. Emotionally, he is a roller coaster but overall doing ok. He and Nicholas have been playing up a storm and love playing with the new kittens. They are adorable and always bring a smile to their faces.
Spencer got a new betta, a blue one that he named Sky. He is beautiful. Spencer even prayed for Sky and Nicholas' Red Boy last night in his prayers! He prays so sweet! He prayed for Jacob, a friend of ours that has burns on his arm and leg. They did skin grafts yesterday, so please remember him in your prayers. His leg is the worst and pray the skin grafts will work. Oh, I can only imagine the pain he has been in.
The rest of your life is the best of your life. You have time to make amends, to help someone, to uplift someone, to encourage someone, to correct any wrong doings, to inspire, and to live for Jesus. A new beginning, start one today. It is never too late to start over. God is forgiving and full of mercy. He cares for you. You are His child. His arms are always open and ready to give you hugs, comfort, peace, joy, and restore life in your soul.
New miracles, Blessings, and Bear Hugs,
Donna
Friday, March 27, 2009 10:44 AM CDT
Hello,
Guess what his hgb is....did it drop? did it rise? YES it did! It went from 10.2 to 10.5!!! Drs probably do not call that an increase in counts but to us parents it is! His platelets were a litte higher as well....8k and his anc is 3960! His white counts are in the N O R M A L range and have been the entire month of March! I'm thrilled! Nicholas did his war whoop when I told him! He was excited too! I kept telling the nurses that his hgb would be higher today and they were! HA! I'm doing heartwheels! LOL! Yes! I'm excited.....it is a miracle! I can't even remember his hgb rising at all....especially in the last 4 years! How's that for a miracle!? 5 weeks without a red cell transfusion! WOW! Definitely a miracle! Amazing! Interesting! Wonderful! Praise the Lord! We are so blessed. His Ferritin level is down from over 2300 to 1379! That is wonderful too! Thank you Lord! If his hgb would stay at 10, I'd be happy! Of course, 11 to 14 is normal and we do want at least 11 and we are half way there! Next, his platelets will begin to climb! Wouldn't that be absolutely wonderful! The first time we have gotten a rise in his HGB.....I can think of countless words to describe how I feel..but heartwheels explains it all! Sorry I'm bouncing around but just think of the possibilities!
Ok. Today was storybook character day and Spencer dressed as Bobo, the Clown. He looked adorable! I will post photos when I can but they didn't do him justice! He was so cute! He was a little nervous and just about backed out the first thing this morning but I told him it would be fun! He even wore his little sponge nose! His bus driver said he looked like the Strouths now! LOL! That is probably true! We are all clowns and love to pull pranks!
Please continue praying for all the ones in the hospital. Will is back in and on antibiotics. Rem the ones going through bmt, transfusions, or continued treatments.
Major miracles, Blessings, and Bear Hugs,
Donna
Wednesday, March 25, 2009 7:06 AM CDT
Hello,
Ok, Ok, I'll update! Nothing new....everything is going along...fine. Nicholas is still bartering with me....If he doesn't complain with his homework for 5 days, he gets a new Nintendo game. Then, he promised that if he gets his game......he will not complain for the rest of his life, cross his heart and hopes to live! I told him that was a tall order to fill. He keeps saying it! Ok! I'll hold him to it! HA!
The other evening Nicholas asked me what the word career meant. I told him it was what he wanted to do for the rest of his life. He said, "My career is to live! I want to live!" Awwww, broke my heart! I guess I should have explain it more detail. I told him it meant for a job. His answer....."My job is to live!" I pray he lives.
Then, as we lay down last night, Spencer wanted me to lie with him. He began asking questions......"Does the body feel anything after it dies?" I explained death and life, using the example of the glove as the body, and the hand as the spirit. After the spirit leaves the body, the body is lifeless as a floppy glove without a hand, no movement, no feelings, no life. Oh yes, he understood immediately. He is very mechanical minded and could imagine it instantly. "How does the spirit get to God?" Then answered his own question by moving his hand in a spiraling motion with spiraling sounds floating up! Yes!
Spencer is taking a course for Boys Scouts called "God and Me!" The pastor told them to get a prayer rock and to pray for a family member and hide the rock in a place where only they can find it. I found the rock in my pillow last night! He had prayed for me. So sweet and precious. Tonight, I will hide the rock somewhere and we will continue this until each member of the family has it. I can see this one going on for a long time. A new family tradition. I like that idea. The feeling you get when you have evidence that someone prayed is wonderful and very uplifting. I know there have been millions of prayers for us and I'm so thankful for each of them. When someone tells me they are praying, I tell them to never stop praying for that is how we are surviving this roller coaster ride. I don't think I would ever want someone else to ride ours. Each ride is custom made for each family! Some have steeper grades to climb, some have spiraling downward turns, some have more level plateaus, some have long rides and some short, but we all have to hold on to God during the ride. He is our protective bar to hold too! He never fails or has mechanical wear and tear. He is everlasting, never "Out of Service", and doesn't depend on electrical power. He is the POWER! Isn't God good? All we have to do is HOLD ON! The roller coaster only stops at the pearly gates. All aboard?
There is another roller coaster....do you want to know where it stops?
Praise report......Delia has a discharge date! Wonderful news! Sam is doing wonderful too. Alicia is home!
Praying for Dianna, her port was removed and she came through with flying colors. Dylan loved the sleep mode for his procedure and wanted to do it again! Too funny! Praying for no gvhd for him. Pray for strength for all of us. Remember the Carty family as they mourn the loss of Kyle. They are dear friends of ours and we love them dearly. Kyle always had a smile on his face.
Holding on Miracles, Blessings, and Bear Hugs,
Donna
Monday, March 23, 2009 7:48 AM CDT
Hello,
Guess what Nicholas' HGB was on Fri? Nope, it was 10.2! For four weeks in a row...it has been 10.something! No red cell transfusions for 4 weeks! Yes, I'm so happy! Yes, I'm doing the Thank you Lord dance! I told Nicholas that his prayer was answered. He said, "Well, half of it!" Yes, he is expecting more! We all need to pray with expectations! Why pray if you aren't expecting answers? His ANC is still around 3k, which is wonderful as well. He seems to be feeling ok too. He does have some thick secretions but nothing out of the ordinary! He is expecting his platelets to rebound as well. They were 3k! Yes, we'll keep asking. Good Job Jesus! Ole doubting Donna just had to have more proof and ask for a post transfusion cbc which in my thinking if his blood was flooded with platelets, then his counts would be at least a couple of points lower! NOT! His Hgb was still 9.7 even after the transfusion. The nurse practioner keeps asking me "What was in the red cells that he received in Cincy? I always answer, "Stem cells? Or we are seeing our Miracle!" I truly believe we are seeing the results of a broken, contrast heart pleading to Jesus for help. Pure heart, totally frustrated and at the end of his rope depending on the only source of help. Drs can't help and are bewildered as to why his counts are suddenly staying up! Momma and Dad can't help or we already would have. All we can do is ask the Healer for help and we have been for 10 years! God's Time. When we are down to nothing, God is up to something! I guess when we let go is the only time God will take over and do His work without our help! I do not know how on earth we would have made it this far without His help! God is good, faithful, and a help in the time of need. My heart is rejoicing! Praise the Lord! Greater is He that is in you than he that is in the world! Here is the whole verse: 1Jo:4:4: Ye are of God, little children, and have overcome them: because greater is he that is in you, than he that is in the world.
Nicholas and Spencer were playing and Spencer said,"I love you bro, but I don't want to be you!" Nicholas laughed and said, "Of course not, no one wants to be a four fingered, crooked hand guy!" Sissy Bear heard him and said, "Doesn't he just break your heart?" A million times a day! He knows Momma loves his hands. I can rem when we were looking at the video during a sonogram on him and I keep asking, "Where are his hands?" and was thrilled that he had four fingers when he was born. Whenever we lay together at night, he wants me to kiss each finger and his imaginary thumb too! He is just so precious and keeps telling us that he loves us! He will write notes to his nurses as well. He seems to be talking more and more about his hands. He handles it well though. Pray for continued strength for him as well as the entire family.
When I pick Spencer up in the evening, he keeps saying all he wants to do is get something to eat and go home to get some Bro lovings! He is so sweet most of the time!! HA! He deals with so much as well and worries about Nicholas. He will ask me on tx days, how it went and if he had any reactions! He knows what his counts should be! He is a deep thinker as well. He has developed a cold after he has strep and doesn't feel the best and needs your prayers and support as well.
Thanks Libbey and Helen for the cards! When they have lip prints on the envelope, they say, "Its either Kim or Libbey!" HA! Too funny! Kim sent Valentiens cards and they knew! They will just roll their eyes! They love mail though and thanks for the cards, for taking the time to brighten up their lives. I don't think I'll ever be able to repay all the kindness sent our way, another "Only God can do it"! We pray for God to bless you as well. He knows how grateful we are for the support and love shown to us! It is amazing how much support we get from non-family! Nicholas and Spencer have touched so many hearts. We are so blessed to have them in our lives. What an honor to be their mom and dad! Precious gifts from God!
Praying for all the children in bmt. There are so many that need your prayers fa and non-fa as well.
Expecting Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, March 18, 2009 8:55 AM CDT
Hello,
I do believe everyone thinks I'm crazy for even hoping for a miracle. Too bad! I will always hope for a miracle. As long as there is breath, I will hope for a miracle. I will take the little miracles for as long as they last as well. I can tell Nicholas' counts are probably dropping due to the dark grayish tone on his face but we will take the reprieve we were given and rejoice for a break in red cell transfusions. If we have to get one this week, it will be a month since his last one! We haven't gone that long between tx in a very long time. I realize it will take time and time is all we have anyway. It's all in God's time and definitely different than ours! We all want everything NOW but that isn't always God's plan. Patience is a virture! Grace is sufficient!
Spencer was wanting to get home so he could eat yesterday eveing and so he could get some brother hugs! So sweet and precious! After Ms Trish left, he got some hugs! It was so cute! I kept reminding them to be easy! I know Spencer worries about Nicholas without really saying anything. He will tell me what he is worrying about when I ask so at least he is talking about it. It's so hard on the siblings. They know what is going on, understand our actions and reactions, and want the truth! They listen in the background even when you think they aren't paying attention. I try to keep the communication lines open for I feel it is better to talk about it than to worry. Sometimes we worry about things that aren't even on the horizon! It's hard for us adults to understand, let alone the children. Nicholas hasn't broken down and cried in front of Spencer, only when Spencer is asleep. I guess that is a blessing in disguise.
Then, people will complain about being tired. I think I'm fighting something, probably sinus infection, because I'm feeling exhausted! Needless to say, I can tell them what tired really feels like.
Please rem all the children in bmt. Alicia is home hopefull! Tyler is back at Cincy with a possible loss of engraftment. Dylan has shingles and gvhd and needs your prayers. Alise is doing awesome! Will is inpatient and needs your prayers as well. Jacy and Jo are having surgery again, rem them. Rem. Nicholas as he deals with all the issues of FA.
Crazy Miracles, Blessings and Bear Hugs,
Donna
Monday, March 16, 2009 9:40 AM CDT
Hello,
Nicholas had his transfusion on Thurs. His platelet count was 10k, Hgb 10.2, and ANC was 3717. His Hgb has been 10 for three weeks in a row! Absolutely amazing! Do I dare get my hopes up? Is this the calm before the storm? Are we seeing a miracle in the making? I thanked God for the miracle! Even having a break is a miracle for us! His Ferritin level is extrememly high and more red cell transfusions only make it higher. Yes, he may have to have red cells this week but we'll take a little miracle each and every time we get one! I think Nicholas' heartfelt break down touched God! Yes, I do believe that Prayer changes things! God can give us more time. He did in the days of old as well. He is still God and still on the throne. He is still the miracle giver! I don't know of a more pure heart that asked God what he wanted. If you don't ask, you don't receive. Only God knows what is in store, for now, we'll receive it with thanksgiving and rejoicing! His white count has risen, his hgb has stayed up, next, will be his platelets! With his Anc being high, I can tell his little body is fighting better as he has had very little secretions from his lungs! It has been amazing!
Nicholas told Sissy Bear that no one would ever want him....a rooster with four fingers, a trach, and a feeding tube. He is getting older and realizing too much. He understands what all is wrong with him and has to deal with everything. He seems to be in a wonderful mood most of the time though. He will cry his little heart out and then bounce right back! Like a goose that wakes up in a new world every day! HA! I'm glad he can bounce back! I'm thankful he can get his feelings out in the open and not dwell on them all the time.
Spencer is feeling much better but has now been exposed to 5th's Disease(mouth, foot, and hand disease)! We'll just keep our eyes open and watch them both carefully.
Opossum Update: Didn't see him all weekend!
Please remember Alicia, she does get to go home this week! Tyler is back in Cincy, with low counts, please rem. his family as they get the results from testing. Dylan has shingles and gvhd(graft vs host disease), please pray for strength, courage, and wisdom for all of them. Pray for Nicholas as he is dealing with FA.
Miracles!, Blessings, and Bear Hugs,
Donna
Tuesday, March 10, 2009 2:11 PM CDT
Hello,
Guess who has strep? Yes! Spencer! I knew something was up and checked his throat on Sat night but it wasn't even red! Then, around 2:30 am, he was nauseated but didn't throw up until around 6. He had a temp but it went down and then back up again! I took him to Urgent Care and sure enough it was Strep! He is feeling better today but is on antibiotics for 10 days. He did get lots of books read while he was off school yesterday.
Nicholas received platelets on Fri and did well with only one hive. We went to the new Children's hospital and it is so pretty! Colorful, bright, and puzzle theme! I guess these children are puzzles! Nicholas sure is! He broke down again Fri night and just cried his little heart out! He said, "I'm tired of fighting the devil! It's like a constant battle!" Broke my heart to hear of his internal struggles. He is a real deep thinking and knows hows he feels and is so tender hearted. Please pray for him and for me to give him the answers he needs but most of all for God to helps us all. He is just a pure little angel. He has been wanting me to lie down with him every night and we just talk and talk with Dad and Spencer snoring in the background! Sometimes we get the giggles and its so hard to keep quiet! I love to hear him laughing!
Please remember Alicia, as she flushed her line with sprite and her port was removed and she should be sporting a picc line to go HOME with!!! Please rem Dylan, Delia, Sam, Emma, JC, Will, Jacy, Jo, Carter, and all the others getting ready for bmt.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, March 4, 2009 8:47 AM CST
Hello,
Can you believe the photos of the opossum eating with the cat? It was hilarious! My brother's dog actually came and ate too but I was afraid he would eat up all the food and shooed him away! Yes, I fed him at a different location! The possum has been hit, we are assuming, and is coming out in daylight to eat! We've seen him and fed him for about a month now!!! He is so funny! He will take his little paw and help hold the food while he eats it! He is very unstable and down in its left hip when he walks! He actually fell over when I threw a piece of bread out to him...didn't hit him but it startled him I guess. He(we aren't sure if its male or female but we call him a he!)has his ears torn up and one eye is out. He loves peanut butter blossums! I guess he can smell them a lot better than bread. The only way he can find the food is by zig-zaging across the area while sniffing the air! We have nicknamed him "Wrong Way" because that is what we keep saying when he is trying to find the food! Like he can understand us!! LOL! The boys have had a ball watching him and we all love to see him smack his food! He is a messy eater though! He loves chocolate kisses! Spencer thinks that is a hoot! Wrong Way knows what is good! HA!
My little possums are doing pretty good! Nicholas tossed and turned all night though without anything apparently wrong. He has a SOL test today that was postponed from yesterday and he is a little anxious about it! Pray that he will do well! That was another one of his reasons for the meltdown on Sat! He is just major frustrated but still keeps on trying. I think he is just tired! Tired of everything, homework, schoolwork, health issues, but has bounced back to his chipper little self! Thank God!
Please remember all the ones in bmt, Delia, Alicia, Dylan, and all the others that go on a regular basis for transfusions and treatments.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, March 4, 2009 8:47 AM CST
Hello,
Can you believe the photos of the opossum eating with the cat? It was hilarious! My brother's dog actually came and ate too but I was afraid he would eat up all the food and shooed him away! Yes, I fed him at a different location! The possum has been hit, we are assuming, and is coming out in daylight to eat! We've seen him and fed him for about a month now!!! He is so funny! He will take his little paw and help hold the food while he eats it! He is very unstable and down in its left hip when he walks! He actually fell over when I threw a piece of bread out to him...didn't hit him but it startled him I guess. He(we aren't sure if its male or female but we call him a he!)has his ears torn up and one eye is out. He loves peanut butter blossums! I guess he can smell them a lot better than bread. The only way he can find the food is by zig-zaging across the area while sniffing the air! We have nicknamed him "Wrong Way" because that is what we keep saying when he is trying to find the food! Like he can understand us!! LOL! The boys have had a ball watching him and we all love to see him smack his food! He is a messy eater though! He loves chocolate kisses! Spencer thinks that is a hoot! Wrong Way knows what is good! HA!
My little possums are doing pretty good! Nicholas tossed and turned all night though without anything apparently wrong. He has a SOL test today that was postponed from yesterday and he is a little anxious about it! Pray that he will do well! That was another one of his reasons for the meltdown on Sat! He is just major frustrated but still keeps on trying. I think he is just tired! Tired of everything, homework, schoolwork, health issues, but has bounced back to his chipper little self! Thank God!
Please remember all the ones in bmt, Delia, Alicia, Dylan, and all the others that go on a regular basis for transfusions and treatments.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, March 2, 2009 11:07 AM CST
Hello,
From 309
Isn't she beautiful?
Yes, we celebrated Mamamw's 80th birthday and had a wonderful time! She loved her home made cards and the ice cream cake. She has had a good week, actually cooking two different meals! Papaw was there supervising but she seems very alert! I think Spring will help her as well! Sissy Bear was still under the weather and couldn't make it but we ate enough for her and Daddy Bear! HA!
Nicholas' platelet counts were 4k, Hgb was 10.9, and ANC was 3050! I think he is still brewing something. He has complained several times with his ears popping. Probably has fluid on them. This weekend has been up and down for him. He and Spencer camped out in the living room and he was so proud of himself!
Sat. brought the total meltdown! He was crying his little heart out about several different things that was bothering him. Here is one: "Why does God have to have His way all the time? There is one prayer that He hasn't answered yet! I want my platelets and red cells to be like everyone elses!" I just held him and tried to explain. We all want our way sometimes and I told him that WE would make a bigger mess of things if we were in charge! God sometimes answers our prayer with YES, NO, and WAIT! Right now we are waiting! Waiting on a miracle, healing, full restoration of his bone marrow, just waiting......and I told him just because God hadn't answered yet didn't mean that we would stop asking. We haven't seen the big picture of God's plan and therefore, we wait to see what God is going to do next! It is all in HIS hands. Our time is not God's time. We all want it NOW! God's glory will be manifested in HIS time. God is good all the time and all the time God is good.
Spencer is fine with no school again today! I love having him with me during the day! He is just a sweetie pie!
Please remember Alicia again in your prayers. She is in ICU, hopefully this will not prolong her dc date of March 11! Remember us in your prayers for wisdom to answer the questions, strength, courage, and knowledge.
Waiting Miracles, Blessings, and Bear Hugs,
Donna
Thursday, February 26, 2009 8:04 AM CST
Hello,
Today is Mamaw's 80th birthday! Yes, she is 80 today! Wonderful, sweet, Godly, precious, the best Mother in the world, the best Mamaw in the world, the best wife in the world, the best sister, the best Aunt, happy, absolutely beautiful, a blessing, did I mention sweet? are only a few words that describe my mom! She is just the greatest! I thank God we have had for 80 years! We feel so blessed. Mamaw, Happy 80th Birthday and hope you have many more!
407
I love my Mamaw!
I think that photo is just one of the greatest ever! It was taken in 07 but still one of my favorites!
All is well on the home front. We go tomorrow for a platelet transfusion. Pray that he doesn't have any reactions except acceptance!
Birthday Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, February 25, 2009 6:45 AM CST
Hello,
Please remember Trossie, my siser-in-law.....they think she has had a mild heart attack. She has had open heart surgery before and had more painful episodes. They will be doing more tests on her today so please remember her in your prayers.
Nicholas is still doing good except that he is still really congested. He did get a B in math and the rest A's on his report card. I'm so proud of him! He is dictating a story to Ms Trish and it's 4 pages long right now! He has an imagination that just won't stop! It is a scary story about a haunted house!
Spencer is still doing good too. He was excited because they have a new girl in class that had moved away and is now back! I get so tickled at him. He gets excited about the funniest things! I think he was tickled that she remembered him. I love seeing him so happy!
Please remember Anthony, Alicia, Sam, Delia is going through bmt right now, and all that need a touch from God. Treatments, transfusions, they are all life saving techniques that are unpleasant but necessary and are so common in the children that have to have them. Normal is their way of life. Dealing with the ups and downs is hard but we all survive! Attitude is half the battle! I'm so thankful that Nicholas loves going every week. It could be so much harder than it is and for that I'm grateful. I guess its a treat to get out of the house and a break from school work! LOL!
If you didn't read yesterday's post, please go to the journal history and read it! It will bless you!
Hearfelt Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, February 24, 2009 6:50 AM CST
Good Morning,
We are baaaaaacccccckk and still kicking! Not too high but still able to kick a little I guess. Can you spell exhausted? That is us. Nicholas and Spencer are well for the most part! Thank the Lord! Nicholas did get his g-j tube exchanged and it is still very tender. He says it stings. They did put in a bigger size and it is much better. He did good during the procedure with the normal questions, "Am I dying?" several times. Yes, every trip is emotionally, mentally, and physically drainng! Right before they began the procedure Nicholas said, "I wish I was already in Heaven so I wouldn't have to have this changed!" I didn't even respond to that one, just held him and cried on the inside. He goes through so much without any relief in sight. Thank God He is with us every step of the way, without Him, we are nothing.
We did get to visit with Alicia for a short time and she was thrilled with her Dora Plug N Play! I loved the way her little eyes lit up and the huge smile behind her mask! She is such a doll baby! We did see Michelle too and got to speak with her briefly. We also saw Sam's mom, Nikki in the hallway but didn't get to speak to her. Michelle wrote in her blog that Anthony is going back to Cincy and his leukemia has returned after his 3rd bmt! Please pray for them and hold them close to your heart over the next few months. Spencer was asking about him as he remember seeing him in clinic the last time we were there.
Now, on to one of the sweetest quotes I've ever heard spoken! Nicholas told Billie yesterday, "Bill, my heart is a picture frame and you are the picture!" Awww, so sweet and precious!! I love it! I asked him if all his girlfriends' photo were in there and he said, "No! Mom, your photo is in there and Dad's and Bub's!" He is so full of love and I find love notes from him all over the place. He writes them to all of us all the time. Pure love, true, innocent, unconditional love, that's Nicholas! That was straight from his heart because he meant it!
Heart felt Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, February 17, 2009 11:17 AM CST
Hello,
Nicholas went to sleep at 7:20pm last night and had to get up in the middle of the night with vomitting and diarrhea again. They did change his antibiotic so we'll see if it helps. He still has diarrhea today. He isn't eating at all which is highly unusual for him. He didn't Sunday either and I know he is sick when he won't even try to eat something. He keeps saying, "I'm tired!" and Billie said he even leaned on her shoulder during his bath today. He will definitely need red cells and platelets this week. He was so pale yesterday evening and Ms Trish just didn't push him during school. I think they ended up snuggling and reading a book! He loved that of course! He did run a low grade fever last night and was chilling. He continued coughing until around 3:30am and I gave him some cold medicine which helped him get some rest.
He called me earlier and wanted me to buy him a Grim Reaper costume so he can scare Billie! He was feeling perky for a few minutes anyway! He loves playing pranks on everyone! He is a mess! A sweet little mess but a mess no less!
Spencer is still in a great mood! He was so sweet and loving last night. He would pet on Nicholas but I can tell he is a little worried and wanted to sleep with us! He needs that security. Out of the blue the other morning as we were headed for transfusions, he asked, "Mom, do you know what I'm scared of? I'm afraid Nicholas will be sick and have to stay at the hospital!" I reassured him that Nicholas would be back home! Then, on Sunday we did have to go but Spencer was there and saw how bad Nicholas was feeling and knew what to expect. He doesn't like surprises at all! He wants to know what is going to happen!
Please pray for all the ones in the hospital, Alicia gets her port today I think, Dylan is plugging along and doing better and remember all the others that need a touch from God. God is the healer. Pray for all that are troubled in heart. God knows and understand all our situations. The trouble is US, putting it in God's hands and letting go. God doesn't need OUR help! He is capable of handling all situations, our big ones are little ones to Him! He knows every sparrow that falls and you know He knows what His children are going through and HE cares about every aspect of our lives. TRUST HIM.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, February 16, 2009 7:43 AM CST
Hello,
I wish I could say that all is well and we are all back to our chirper little selves but I can't! Nicholas woke up yesterday and just drooped around. I knew something was up. He began throwing up and diarrhea all over again. I feel like we aren't on the correct antibiotics for whatever is going on with him. Now that we have been home a few days and not on the ones that he was on in the hospital, the symptoms are kicking back up again. Makes sense to me and I'm not a rocket scientist! He will be getting his G-J tube changed this week and that may just be the culprit that is causing him to be so sick.
I'm just holding my breath until I hear back from St Judes. I'm just on edge. He was coughing up blood yesterday but it stopped by the evening.
Spencer is doing good. He received balloons from his "Best Friend!" He was so hyper, he couldn't stand himself! LOL! It was too cute!
Please rem Dylan in your prayers as he is having seisures from one of his meds! That has to be scary! Pray for Alicia as she gets her port this week. Too many in hospitals to even begin naming them all. Pray for Mamaw and Papaw.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, February 12, 2009 7:41 AM CST
Hello,
Nicholas is HOME!!!!!!!!! Whooo hooo! I'm so happy! He was crying to see his Dad! He still isn't feeling the best but he is some better. His platelets were 13k yesterday and he had to be transfused. Then, we could go home after the transfusion. After the transfusion, the PICC line wouldn't flush! It began flushing a little but was very sluggish. I just about had a heart attack! They were going to use tpa and that would have taken about two more hours! I finally got it to flush freely and we were able to leave. We didn't get home until around 9:30 pm! He developed a terrible cold while inpatient with eyes and nose pouring! He looks like he feels horrible and was very tired. He hasn't perked up much at all even with all the antibiotics on board. Hopefully, he will get on the right track towards "Little Imp" status!
He didn't flirt with the nurses at all! Well, he did give away some of the balloons that Libbey sent him! He loves giving them to others! He gave one to his favorite resident, Justin, a big smiley face! I told him he was ...Justasmiling! Justin tied it on his stethoscope! Then, he gave two pastel ones to a couple of blond nurses!!!! That was the extent of his cheerfulness! He slept all the way home and went to sleep in his own bed. He didn't cough at all last night!
Spencer is feeling better and so are we! I'm just sore from sleeping in a chair for three stright nights! Well, I was up every hour suctioning Nicholas, so I guess you can call it sleeping! LOL! I do thank God for being home again though and bringing us through the storm/tornado warnings safely. We didn't see any rain but did see lots of limbs and branches in the roads and where some trees had fallen.
Please continue praying for Nicholas that he can beat this infection in his lungs. Pray for Alicia as she is battling her share of the bugs as well. Dylan is off the ventilator!!! Whooo hooo! Pray for Westin for the pain in his ankle. Praying for clear scans as well for Westin.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, February 10, 2009 8:22 AM CST
Sissy Bear Here!
Nicholas' temp is down, but he has lots of congestion and coughing up lots. They are giving him 3 major antibiotics.
Donna was sick Sun. night with stomach virus; Jeff was sick yesterday eve. with the virus, too. Pray for the whole family.
Pray that Mom and Dad don't get it, nor Jeff's mom. Daddy Bear and I don't want it either, but we would rather be sick than the others. We were all at Nicholas' house Sun., so we all have been exposed to the virus. Spencer is just getting over a cold, ear ache, sore throat; we hope he doesn't get a stomach virus on top of everythng else.
Today is Jeff's birthday! What a birthday!!!! HAPPY BIRTHDAY, JEFF!! Wish that you guys were feeling better.
Also, today is Trossie's, our sister-in-law, birthday, too.
Hope she is feeling fine and having a HAPPY BIRTHDAY.
AND MANY, MANY MORE FOR BOTH, JEFF AND TROSSIE!!! WE LOVE YOU!!
Thanks for all your prays and thoughts. Please continue to pray.
Love,
Sissy Bear
Monday, February 9, 2009 8:36 AM CST
Sissy Bear here!
PTL they had a safe journey to hospital last night! On the way he vomited twice and started chilling really bad and once he got there, had to wait for a room to be cleaned! I talked briefly with him and told him that I was praying for him. He told me that he had gone to the window in their dining room and prayed yesterday morning!!!
Jeff called me this morn before I left for work and said that Nicholas has an ear infection and is chilling a lot which means a high temp! I don't know if anything else is going on or not. I have not talked to Donna today; I will know more later after I call the hospital.
Please just continue to pray. He is too weak to do this on his own, so it is going to take a higher power to pull him through.
I know God has a plan and it is perfect; His will be done in every aspect of our lives. I put all my faith in Him and lean on Him for everything. When one can do that, there is peace that cannot be explained. I wish everybody in this whole world could feel that peace.
I do not know how people who have not accepted Christ as their personal Saviour can go on from day to day! Without Him, I would be miserable. I supposed that is why so many turn to drugs which create more problems. If they only knew!
Hold us up before the Lord.
Love,
Sissy Bear
Sunday, February 8, 2009 6:52 PM CST
Sissy Bear here!
Nicholas is sick with sore throat, temp of 101.2. Donna is on the way to hospital with him(2hrs away). As you know, any little thing is serious with him since his immune system so low.
Please pray for him and for Donna, too. She was sick yesterday and not feeling the best today.
While you are praying, pray for the whole family.
Thanks.
love you guys.
Sissy Bear
Tuesday, February 3, 2009 7:59 AM CST
Hello,
We have snow! It began snowing yesterday and schools were dismissed at noon! We received about 2 inches and expecting another 6 inches! Spencer is with Momma today! Right now he is with Libbey, she spoils him but does give him things to work on and he is a happy camper!
When I went home yesterday evening, Nicholas was feeling droopy. I checked his temp and it was 100.2d! He looked weak out of his eyes but other than coughing up some blood the night before, he seems ok. He was chilling the other night too but no fever. His temp gradually came back down and he is at 99d this morning. He just says that he is tired. I keep holding my breath!
Sissy Bear is sick! She sounded horrible yesterday! I told her that I heard that the flu was raging so hopefully, she will find out something today at the drs office! Pray that she feels better soon!
Praying for all the children in the hospital and a couple of new FA diagnoses! It's a rough journey but with many rich rewards along the way. We value each other and life so much more! God has blessed us with two precious gifts that is for sure! Don't forget to hug your children and let them know you love them!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, February 2, 2009 7:55 AM CST
Hello,
The dr decided to try giving Nicholas more red cells last week to see if he would hold on to them longer. His Ferritin level is extrememly high and he is on the maximum dose of Exjade that he can be on. If we can space out the red cell transfusions, hopefully, we can lower the Ferritin levels by and let the Exjade work! The more red cells he receives, the higher the Ferritin level goes. We'll see what his Hgb is on Fri and hopefully, we can go for three weeks before he needs more. I think it really hit me that he could possibly not be able to get red cells because of the ferritin level! Goodness, with a hgb of 6.6, he had to have them and received 150 ml of extra red cells. Pray he can hold on to them for longer periods of time. He has had a great weekend although still saying he is tired at times.
Spencer had a lock-in at the Fun Expedition and stayed awake until 5 am, playing non-stop! They fed them pizza at 4 am! He slept for most of the day on Saturday and was back to himself on Sunday! He had a blast!
Thanks for the prayers for Mamaw! I think posting her photo really touched a lot of people and the prayers came through! She looks nothing like that photo now! All the skinned places are healed except for the bridge of her nose! Her eyes are still discolored a bit and just has two small bruises on her cheeks where the rim of glasses hit her face. She told me she appreciated me asking prayer for her and that I could post her photo if I thought it would help! It is amazing that a simple fall could bring such results but we realize that she could have been hurt a lot worse and are so thankful that she wasn't. Nicholas ran to the door and just had to hug her. She still has a thumb that is swollen and Nicholas held it and prayed for it. So precious! He had her reading to him all evening. Ms Billie said she is helping with a patient that fell on her face and it paralyzed her from her neck down! Simple falls can result in major damage. We love our Mamaw and Papaw and appreciate them so much! They are going to do a brain wave scan on Mamaw tomorrow, so continue praying! She was very alert yesterday. Again, we thank God for all His blessings!
Remember all the children in the hospital, Dylan is still in ICU and on the ventilator, Alicia is doing pretty good and going home the end of this month! Please pray for us.
Mamaw Miracles, Blessings, and Bear Hugs,
Donna
Friday, January 30, 2009 11:28 AM CST
Hello,
Nicholas is a robot today....named Nick Tick.....yes, he is feeling much better today! He is a bundle of energy! I love it! We had a long day yesterday...a 13 hour trip and that doesn't include preparation time before the trip and all that had to be done after the trip! Ugh! I'm getting more tired as I type!! ;) All that matters now is that he is feeling good! Whooo hoo! Do-you-compute?
Spencer is hanging out with Sissy Bear today! He loves visiting her school on his days off! I think she like having a good little helper!
Pray for Taylor, they are sending him to Vanderbuilt! Pray for all of them! They will have a lot to deal with in the next few weeks. The drs in Kingsport doesn't know what is wrong! Pray for all the others in the hospital.....FA related, Dylan is still on the ventilator!
Pray for Mamaw!......see above photo.
Nick Tick Miracles, Blessings, and Bear Hugs,
Donna
Thursday, January 29, 2009 12:19 AM CST
Hello,
Nicholas' platelets were 6k, hemoglobin was 6.4!, and anc was 1180. He has received platelets and will get red cells too. He is so sweet today and woke up in a great mood!
I did get to visit a neighbor that is in here and he thinks he is coming home today! Wayne is doing much better.
Remember all the ones in the hospital and rem Mamaw and Papaw!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, January 28, 2009 11:13 AM CST
Hello,
Monday, Nicholas called me at least 5 times. He wasn't feeling well at all. He was very pale and droopy. During his bath, he asked Ms Billie if he was going to die and how long she thought he would live! Of course she told him that he wasn't going to and that only God knew when our time is up. He didn't mention anything along those lines to me! I think he is trying to protect me! He must have been feeling really bad! Yesterday, he woke up feeling much better. He was congested but other than that he was fine.
He had a bandage on his hand yesterday and I asked him why and he said, "So I won't pick at it!" After school was over, I asked him what scratched his hand. He said, "That feline furball, Silverbell did it!" I couldn't help but laugh! He said he was trying to let her know that he wouldn't hurt her and she wasn't use to him as well as Baby Black Girl! BB Girl is expecting kittens soon! AGAIN! He loves kittens and so far we have been able to give them away. He is still mad at me for giving Midnight away!
Spencer and Nicholas played with a little soccer ball in the hallway yesterday and had a ball! Spencer has been getting pouty if Nicholas doesn't play with him! He definitely needs to learn some sportsmanship!
Praying for all the ones in the hospital! Dylan is still on the ventilator, please say extra prayers for him. Alicia is still ok for now. Pray for Mamaw S, her neurologist thinks she has Alzheimer and will continue to get worse. She also fell stepping of the sidewalk and her face hit the pavement. Skinned her chin and nose, then had chest pains, and ended up in the ER! She was ok though and they sent her home. Please pray for her and Dad! We love them so much!
Major miracles, blessings, and bear hugs,
Donna
Monday, January 26, 2009 11:35 AM CST
Hello,
Nicholas received platelets on Fri. His plts were 6k, Hgb was 7.9, and ANC was 1440. The transfusion went well without any reactions at all! That made for a great day! We have had a good weekend as well. He has not been sick at all. He has said some funny thing but with my pea brain, I can't remember what they were! I may think of them later or not! HA!
Spencer is good too. He had a bad dream last night and woke up at 2 am! I woke up a few seconds before he did and heard him flopping around in bed and then to our bed he headed! After a drink of water, he wanted me to lay down with him. He went right back to sleep! He wouldn't tell me what he dreamed.
Camp Sunshine applications are out! Volunteers are already putting theirs in and already have received their acceptance letters back! Wow! FA week is August 7th through the 12th! Nicholas is in for a great surprise! I guess we will have to make our Cincy stop on the way up and on the way back in order to enable us coverage during the weekend. I pray we get to go and have a fabulous time while there!
Working on some items for selling for FARF while we are there as well! I am also gathering up the boys old costumes and sending them to camp! I think they would benefit from them more so than anyone else! Masquerade Night is one of the highlights of camp that they all enjoy dressing up for! I have a knight, pirate, clown, dragon, ninja, superman, spiderman, and TMNT!
Little Ms Alicia is going home at the end of Feb! Yaaaay! Sam is doing some better, pray she begins eating better. Tyler did make it home and is doing well. Please pray for Dylan, he is coughing more and more. Remember Nicholas too. Another little boy is transfusion dependant just like Nicholas, Zophia and needs your prayers.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, January 20, 2009 7:30 AM CST
Hello,
The crew is well and fiesty again! Nicholas is feeling much better after he received his red cells. They make his feel much better for a while, then you can see his energy diminishing. This is a vicious cycle and we are seeing it every two weeks with his red cells. I thought the last one was three weeks but it wasn't. He was fighting that virus and they make his counts drop faster every time! I'm thankful for the good days.
Spencer made his first snowman! We finally got enough snow to make one, about an inch. He was with Sissy Bear and guess what kind of snowman they made? 
From Jan09
He said it was an Indian, using pine branches for the feathers! He had a wonderful time! He is out of school again today! They will have to go up in June to make up for these snow days! He came in and he and Nicholas played and played! They had missed each other so much! It was cute!
Pray for all the children getting bmts. They are having such a hard time! Bmts, relapses, bone marrow aspirates, treatments, transfusions are every day common words in our world! Pray for a young man named Taylor, he has spots on his spleen, liver, and lesions on his bone scan. He really needs your prayers. They are doing a bm aspirate today and more testing as well. Pray for them.
Presidential Miracles, Blessings, and Bear Hugs,
Donna
Friday, January 16, 2009 12:49 AM CST
Hello,
Nicholas is getting red cells right now. He has already had his platelet transfusion, his count was 5k, his HGB was 6.0, that is the lowest it has ever been. His ANC is 1224. They did draw for blood cultures. He seems ok for the most part today. He coughed up blood this morning and has petechia all over his little body. His legs were covered! I have never seen so much petechia in all my life! It is also on his torso and arms but not near as bad as his legs. I don't think his platelet count is that high! He is eating everything in sight or trying too!
Spencer is Dad's buddy today as they called off school again! He is a happy camper today I'm sure! He loves his Dad and running around helping him! I called and one guess to what they were eating! Pizza! He loves it!
Pray for all the ones in the hospital! I haven't checked my email yet so I don't know how everyone is! Keep praying!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, January 15, 2009 8:51 AM CST
Hello,
Nicholas is having bouts of nausea although he seems to be feeling better overall. I'm not sure what is going on! He has not had a high fever during any of this! He had pneumonia one time and didn't have a high fever with it either though. No indicator that he is fighting something is more scary I think! He is perky today though, so hopefully it was just a virus! He did well in school yesterday...according to him!
Spencer ran around with his Papaw yesterday and was scratched on the lip by a kitten! They were at a farm supply and a rooster crowed and scared the kitten! He saw a ferret, pig, horse, dogs, and a cat! That is all he mentioned anyway! He is so funny! He elaborates on how big things are and it is hilarious! I ask him...."Now, Is that the truth or is that your imagination?" He will laugh and say, "Mostly imagination!" He tells the truth at least! HA!
Please remember this family in your prayers as their son draws near to the end....Zachary
He has cancer and the family desires your prayers.
Also Sam's antibody test came back positive and that is not good news! She will begin on more meds. Pray for Alicia, she is out of the hospital! Dylan's getting tests today on his lymph nodes, the dr said it was too risky to biopsy the mass behind his heart. Please pray for them as well. Pray for us too.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, January 14, 2009 6:37 AM CST
Hello,
Nicholas was really nauseated Mon eve and still had some tummy problems. Yesterday, he was much better though. He ran a low grade temp last night and again this morning it was 99.8*! He actually woke up at 5 am sick again and actually threw up but the diarrhea is better. We put him on pedilyte yesterday for a while and that seemed to help. He is fine other than that though. He was much perkier yesterday evening as well. Hopefully, it was just a virus but my gut feeling is that it isn't. I called JC and they said without a high temp they wouldn't put him on antibiotics so we will wait and see. If his temperature does go above 100.5*, he will be in JC! This reminds me of when he got sick in Maine at Camp a couple of years ago and his central line was infected, only he isn't near as droopy as then! I know he will need red cells on Fri, if he doesn't I will be surprised!
Camp Sunshine will be August 7th through 11th this year! All I know is that Casey had better be there! Spencer has already said he doesn't want to go one minute then you ask him what his favorite thing to do in the summer is and he will say Camp Sunshine!?! I told him yesterday when the date was and he got all excited! Who knows! He is a ball of emotions sometimes. Bless his little heart, he does have too much to deal with at times.
Alicia was discharged yesterday! Whooooohoooo! She is such a cutie pie! They boys have made her a card so I will be mailing those out! Remember all the others in the hospital as well! Sam is out too! Now, Dylan needs out of there too! I just found an update on Dylan and here is part of his journal....
Day 81
Dylan’s Team Members,
Dylan said that he hoped his “eighty-oneth” day was better than the 80th!! He said he never knew you could throw up through your nose.
They found a mass behind Dylan’s heart today! Don’t know what it is, but it is putting pressure on his heart and causing a very high heart rate!! This could be very, very serious!!! They plan to do a CT scan tomorrow, and possibly a biopsy!! They said it could be a tumor caused by the PTLD. They also have to use contrast, which could put his kidneys back into renal failure!!!
"But I will restore you to health and heal your wounds," declares the LORD. Jeremiah 30:17
Tonight, I pray that this mass will be nothing serious! I pray that his kidneys will not suffer! I pray that GOD will heal Dylan soon!
Love,
Betsy
Dylan's Website
Please visit him and leave an encouraging message!
This month is Nicholas 4th year anniversary of being transfusion dependant!!! I thought it was three...but its four years! I can't believe it has been that long. I'm just thankful that everthing is as well as it is! I just wish we had some hope of a cure. I pray that some of these researchers get inspired from God and delve deeper and keep searching for the answers to a CURE!
Curing Miracles, Blessings, and Bear Hugs,
Donna
Monday, January 12, 2009 9:30 AM CST
Hello,
I've lost one update! Here goes another try....Nicholas has been ok this weekend but has had a few issues. His Mic-Key button has been itching and stinging him all weekend! I think it needs to be changed to a longer one!
From Nov05
He dreads it so much but it was just too aggravating this weekend and he is ready to have it changed! He has had some diarrhea and also ran a low grade temp of 99.4d yesterday. He says he is tired all the time and gets out of breath with the least bit of exertion.
Spencer is fine. He kissed Nicholas' bruised knee last night and it was just too precious! I believe they missed each other the first day back to school. Spencer was reading him a story and had his arm around his neck! It was just a kodak moment! So precious!
From Jan09
Please remember all the ones in the hospital! Alicia has pneumonia but feeling some better, Sam is still inpatient with a virus, and Dylan really needs prayer right now. He isn't making platelets yet and suffering from a virus as well. Pray for the caretakers for strength and wisdom!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, January 9, 2009 12:11 AM CST
Hello,
The transfusion went well but during the middle his tongue began itching and I just knew he was going to react major but he didn't! Thank God! He was itchy all over but didn't have any hives! I sighed a breath of relief! The sun was shining and all the snow had melted by the time we left there! It ended up being a wonderful day!
I have made a few discoveries about myself! I CAN live without coffee and chocolate! Yes, I'm torturing myself with a double whammie and quitting both! HA! The bad headaches have diminished some so I think I will survive after all! I didn't think I could function with out them but I am actually feeling a little better!
Spencer is doing good too! He has not been in the best of moods lately and didn't want to go back to cub scouts! We went and he didn't cooperate at all! He ended up having to call the leader and apologize! He seemed to feel better after that and seemed to be in better spirits! He has a time that is for sure! I have to get him to talking to me and he will finally get it out of his system! He does have a lot to deal with! I made the comment that Nicholas wouldn't make it til Fri and Spencer asked, "Is he going to die?" I told him NO that I was talking about platelets, that Nicholas' would too real low if we wait until Fri to get transfused! Bless his heart! I need to be more specific I guess! He is a little worry wart I do believe!
Just keep the prayers going for all of us! We all need your prayers that is for sure! Remember all the one going through bmts, treatments, and transfusions!
Miracles, Blessings and Bear Hugs,
Donna
Thursday, January 8, 2009 9:45 AM CST
Hello,
We made it to JC admist all the snow! The roads were relatively clear! There wasn't any snow in some areas at all! We arrived at the hospital and the snow was peppering down and trying to stick! I think its melting mostly now! It looks cold out though!
Now on to the man, his counts are low! Platelets were 2k, Hgb is 8.4, and ANC is still climbing at 1845! He will get platelets today and hopefully that will get him back in the groove! He fell this week and has a huge bruise on his arm and one on his knee! He scraped his tummy against his desk and has a bruise there too! It's a wonder he isn't totally one big bruise with such a low platelet count! That's what happens when we wait 9 days! Maybe now that the holidays are overwith, we will get back on schedule!
Spencer didn't have school today due to snow and he came with us! I'm surprised he didn't want to go with Dad but he chose to come with us! He has been really sweet toward Nicholas!
Pray for all the children and adults dealing with cancer or a chronic illness. They all need our prayers.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, January 6, 2009 7:10 AM CST
Hello,
Nicholas and Spencer are just fine! Nicholas has been doing pretty good, a bit junky but other than that he is fine! He is so jealous it isn't funny! My neices baby was visiting and that night Nicholas said, "You always pay attention to babies and not me!" He cried his little heart out! He was just fussing and fussing to himself! He told me, "Big boys need attention too!" HAHAHAHAHA! I couldn't help but laugh!
Spencer is back in school. I missed him so much yesterday! I didn't have my baby at work with me! He came several days with me and I enjoyed his company! He is so precious!
I did get a video loaded up of Nicholas singing on Facebook, go and see it there! It is adorable! His version! Last night he was playing with some cars and said, "Eenie Meenie Minie Meel, Catch a car by the wheel, If it hollers, let it squeal, Eenie Meenie Minie Meel!" I thought that was just the greatest! He is so creative! He was so proud of himself!
We go Thursday for transfusion! If he doesn't begin bleeding somewhere, we will wait til Thurs! Hopefully, he will last that long, but I'm sure his counts will be on rock bottom!
Pray for Dyland, Alicia, Sam, all back in hospital but doing much better! Miracles are happening! Pray for all the ones getting ready to go to bmt.
Big Boys need Miracles, Blessings, and Bear Hugs,
Donna
Friday, January 2, 2009 2:01 PM CST
Hello,
Happy New Year! Slogan: Let your light shine in 2009!
Awwwwww, what a year! Recapping.....too many platlet transfusions, too many red cell transfusions, and too much stress! I'm too tired!
Nicholas is doing good so far! He helped take down the decorations and had to lie down while doing it! He was a little short of breath and really junky but it seems to be some better!
We had a wonderful Turkey dinner for New Years! Yummy! I really enjoyed being home all together with Mamaw and Papaw eating with us! Mamaw's condition is about the same! This Christmas has been emotional for me but I've held it in! She asked when we were celebrating Christmas! Bless her little heart! She still looks wonderful and will be celebrating her 80th birthday in Feb! Wow! That is close! I guess we will have to get busy planning another big party! We are so thankful she is still with us in whatever condition she is in! She will remember something that happened years ago but can't remember Christmas! We just answer her and go on! Nothing we can do but answer the same questions twenty times over and over again! We love Mamaw! and Papaw!
Please remember all the children in hospital or getting treatments, transfusions, or transplants.
New Years Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, December 30, 2008 1:05 PM CST
Hello,
HA! Thanks for signing the guestbook and thanks for praying for us! Nicholas has already had his platelets and now getting red cells. He is doing good so far! His platelets were 21k, Hgb was 6.9, and his ANC was 1658 which is going higher. I do believe he is fighting something! He seems to be ok and not having any fevers so we wait and see. That is our usual! Wait to see what shows up!
Spencer did get to play with Emma and Westin for a little while! He showed Ms Emma how to play a game on the computer and I couldn't help but laugh! When I asked him, he strode out of that room, arms swinging, and walking so big like he was the big man on campus! It was hilarious and precious at the same time! We came up to the gift shop and he is now munching on Cheese Puffs! He has been so sweet to Nicholas. He blocked the sun from his eyes on the way here this morning while he was sleeping. I was watching him through the rear view mirror! He is such a sweet brother!
He is wanting to go back to Nicholas' room! We'll see ya later gator!
Pray for all the children here at ST Judes! They all need your prayers and the families too.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, December 29, 2008 1:58 PM CST
Hello,
There were a lot of hits on this website over the holidays but only one additional person signed the guestbook! Hmmmm, please let us know you have stopped by! I do print it off and show the boys! It DOES brighten up our lives as well! I also save it in a file to print one of these days!
Please don't forget to send in your contribution to FARF! Choose us as your charity to donate too! Put Team Nicholas or Boggs FAmily in the memo and they will let me know that you donated on our behalf! We send you our heartfelt thanks for your tax exempt donation.
The boys are still enjoying their gifts! They loved all of them and still riding the bike in the kitchen, going around the island and into the dining room!
I can tell that Nicholas' counts are dropping! He is just droopy, a little grumpy bear at times, and sounding frustrated because Spencer took the game he wanted to play with him! He says he is tired. I'm sure he will feel much better after he gets red cells tomorrow. Yes, tomorrow, Tuesday is their only long day the rest of the week and we will be there all day tomorrow. That will make a nine day stretch for platelets next week and I may just have to rearrange the schedule if he begins bleeding anywhere. I'm just not comfortable waiting that long between platelet transfusions. I'm willing to be flexible! I have to be! HA!
Pray for no reactions! Pray for all the children in the hospital during Christmas! I'm so thankful that Dylan is doing better! Prayers are being answered!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, December 26, 2008 7:48 AM CST
Hello,
Don't forget to read the last post and send in a donation to FARF for 2008! Thank you!
Christmas morning dawn early with Santa bringing in the bikes and tying red bows on them! We did get to lay back down for a few minutes before two little bears got up and were all excited! After Nicholas used the bathroom, I put him in our bed and we all snuggled a few minutes together! That is one of his favorite things to do is sneak in our bed! After breakfast, Dad read about the birth of Jesus to us from the Bible. It was very special. God giving us the best gift of all, Jesus, the Lord and Saviour of the world, and the only reason for the season!
Then, we opened the gifts! Well, Santa was wonderful to all of us this year! I do believe two little boys are spoiled! As soon as they opened their gifts, I asked, "What do I need to take back?" They both chimed, "NOTHING!" HA! I knew once someone opened their gifts there would be no turning back! They loved their bikes and all the other gifts as well! It looked like a tornado had hit the living room! HA! Dad cleaned up as we went and that helped! Snow would have been the only item that could have made Christmas better! We are so blessed and so thankful that things are as well as they are.
Wed, we went to JC for his platelets without any reactions!! His plts were 12k, Hgb was 8, therefore we didn't get red cells, and his ANC was a little high at 1519! Ms Becky was nauseated before we left and by the time we arrived in JC, she was chilling and had a temp of 101! We are praying for Nicholas and Spencer's protection! I know she felt terrible about exposing them but she had no clue she was going to get sick! No one does as far as that is concerned! It may not have been a virus! She had been without sleep for a while and could have just been her body reacting! She made over 1080 chocolate covered p-nut butter balls for people for Christmas! Bless her heart! I called to check on her yesterday and she was feeling better. Santa came to visit while we were there too! I told Santa that they didn't believe in Santa anymore! Nicholas said, "MOM! Did you have to say that?" Nicholas had him laughing! Nicholas told him he wanted the truth and asked him..."Are elves real?" HA! HA! Spencer was in awe of him! I told Spencer, "He looks so real, it makes you believe in Santa doesn't it!" Spencer shook his head yes! He is a sweet little man and told them that he stopped believing at one time too and then decided to become Santa to brighten up the children's lives! He hair is solid white and he has a natural beard and his suit was beautiful, embellished with golden swirls and scrolls and fake polar bear fur! I'll post the photos!
We will be going back for transfusions on Tues of next week due to a reduced New Year's schedule! He will have a long day with both transfusions! Pray for no reactions!
Please remember Dylan, he is doing some better but still in the hospital! I'm sure he isn't the only one! Please remember all the other children and families as well!
Gift of LIFE Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, December 23, 2008 12:43 AM CST
Hello,
Merry Christmas from the Boggs Bearzzzzzzzzzzz! I've not mailed out a single Christmas card this year and probably won't! Our hearts are in the right place but my thinking cap isn't on correctly! HA! I guess I'm too exhausted to think! But we do wish everyone a wonderful, fun filled, healthy, joyous Christmas season! I still cannot believe how fast it has flown by! Thanks for all the support we have been given throught out this year! I don't know how we could have made it through without all our online friends and FAmily. I think we've received more Christmas cards from the FAmilies than from our own immediate families!
Gift giving is the representation of the gifts first brought to Baby Jesus. I do have one request as ususal this time of year, please send a gift to Fanconi Anemia Research Fund, 1801 Williamette Street, Suite 200, Eugene, OR 97401 in honor of Nicholas and Spencer. Without money, the researchers wouldn't have already discovered 13 FA causing genes!!! In which, two are closely related to cancer! That's phenomenal for an orphan disease to have already researched so much information and to be able to get the information into the hands of the families. Progress is being made and that is because of your donations! Please be a part of TEAM NICHOLAS!!! Online donations can be sent via PayPal to info@fanconi.org
FARF is a non-profit organization and your donations are tax deductible! If you haven't ever donated before, please consider this group for your Charity To Donate To! I will get a notice via email when you donate!
Please remember Nicholas as he goes for transfusion tomorrow! I'm not sure if he will need red cells...it will depend on his hemoglobin(hbg) level. He really enjoyed his visit from Billy LouBob! He was the camera man that videoed the boys last night! He left then Santa appeared! Imagine that! They both really enjoyed the evening and the new Nintendos!!! Spencer finally got his game boy replaced! HA! They did have a good time though! Thanks Santa! You are the best!
Christmas miracles, Blessings, and Bear Hugs,
Donna
Monday, December 22, 2008 1:03 PM CST
Thanks Susan and Holly for sponsoring Spencer online in the mathathon! Thanks for all that donated to him in person as well! I do believe he did really well! He was pleased!
We celebrated with Sissy and Daddy Bear for Christmas on Sunday! They will be visiting their grandson, Jack and Mike too of course! HA! Jack is such a doll baby. I miss him. Nicholas told her to just go see her "Grand Twirp!" Jealous??? YES! Most definite! We did let the boys open a small present and they were thrilled! Mamaw cried and said, "I don't feel like I deserve a present!" She loved hers too though!
Spencer had his Christmas party on Thurs. He is now out of school until next year! I cannot believe this year is almost over! I don't know where time goes!
Fri, Nicholas received his platelet transfusion. His counts were 5k, Hgb 8.7, and his ANC was 1216. He didn't have any reactions and for that, we are most thankful! He goes on Wed this week for transfusions! Yes, Christmas EVE!!!!!! Pray that he will not have any reactions!
Alicia was suppose to fly home today! YES! Praise the Lord she will be home for Christmas! Natalie is also HOME for Christmas! Dylan is actually trying to walk! Tyler is home too! I do think that miracles are in the making!
Miracle of Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, December 17, 2008 1:13 PM CST
Hello,
We are all well......still giggling along! I'm less stressed because I wrapped packages while Nicholas was in transfusion last week and feel more organized, if that word is even in my vocabulary! HA!
Nicholas is doing ok, no problems so far with any more reactions. I had him laughing so hard last night! He said something that I didn't understand and asked him if he said "egg roll?" He laughed so hard that he couldn't tell me what he was saying and we were trying to be quiet because Spencer and Dad were trying to go to sleep! It was funny and I just love to hear him laugh! Then, we were in bed and were snuggling and I asked him what he wanted Santa to bring? He asked me why and I said, "So I can get it and put it in his sa......" At that point, Nicholas burst out laughing again and said, "You let the cat out of the bag!" I was going to say "sack" and he thought I was going to say stocking! He thought that was hilarious! Of course it was too funny and we shook the bed laughing and didn't wake Bub and Dad up! I love it when he is feeling this good and we have our special laughs!
Spencer is still proclaiming he doesn't want anything for Christmas! I'm not sure what we are going to do...he saw the wrapped gifts and wanted to know what was in them! He has to wait though! He did get to go shopping for us at school and had a $1 left over and when I asked him what he did with it, he said, "I put it in Bro stocking!" Every time I think of him and Christmas, I cannot help but cry. He is worried about Nicholas ever since he overheard me say that Nicholas will have to have transfusions the rest of his life! Have I already written about this? If so, sorry!
Prayer Requests:
Dylan is off the ventilator! Sam's platelet count went up and the antibody study isn't back yet! There is a lot to be thankful for! There are still many that need our prayers and are in the hospital. Alicia has a runny nose and wants to go home! Natalie is doing ok. Westin is wonderful and so is Dylan! Precious, precious babies at St Judes needs prayer.
Merry Christmas Miracles, Blessings, and Bear Hugs,
Donna
Monday, December 15, 2008 9:04 AM CST
Don't forget to donate to St. Judes! Thank you so much! This helps Spencer too! He completed the math booklet and will turn it in today. You can continue to donate to St Judes online! Thanks!
Please sponsor Spencer in the St Judes Mathathon!
***********************************************************
Hello,
Nicholas did get transfused on Fri and had to have both platelets and red cells. He did have a reaction and began by saying, "My tongue is itching, get me a fork!" and then began to break out in a hive on his tummy. He then began to vomit! They stopped the transfusion and he was only sick for a few minutes. They gave him Zofran for the nausea but we held off on the Benedryl. He did break out again around 9 and Sissy Bear had to give him some Benedryl! He seemed ok after that and was ok the rest of the weekend. I did get some gifts wrapped while he was in transfusion and he spied them in the back! His little face lit up to high Heavens! He was so excited he couldn't be still!
Spencer is doing ok...frowning when he saw the gifts! He still says he doesn't want anything and will give them all to Nicholas!!!! I just don't know how to handle this situation! I told him if he didn't want the gifts, I would take them back! Dad told him he could give them to him! He thought that was funny! I think he is going to be very pleased!!! I can't wait!!! I LOVE Christmas! I just need to bottle some of their energy for me later!! I did get the mantle finished decorating and the table is just about finished!
Please remember Dylan in your prayers as he is in kidney failure and has an infection in his lungs! I read where Ms Nat was doing some better. Pray for Sam and Alicia! Tyler is home! Alicia will be going home for Christmas and I'm sure they will enjoy that! Pray for all of us that have children with chronic illnesses! Its exhausting to say the least but doable! God's grace is sufficient.
Christmas Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, December 10, 2008 9:10 AM CST
Don't forget to donate to St. Judes before FRIDAY, the 12th! Thank you so much! This helps Spencer too!
Please sponsor Spencer in the St Judes Mathathon!
***************************************
Hello,
Well, I went home feeling troubled and of course, continued my daily plea of "Lord, give me strength." Nicholas said, "Mom, feel of my head!" Sure enough, he had a low grade temp. He has been on the nauseated side more that usual. He was drooping around and was very tired. He did get up early yesterday and his hgb(hemoglobin) is probably dropping. I'm holding my breath.
What I wasn't prepared for was Spencer limping and complaining with his knee hurting with every step he took! I just cringed inside. I think he may have just been sore from walking the entire length of Coeburn in the parade! After a warm bath, tylenol, and a good nights rest, he awoke feeling fine and without any complaints!
I'm so tired and exhausted! Wish I had a fairy to do all my Christmas shopping for me! I love this time of the year but I sure can tell a difference in myself this year! No, it couldn't old age! NEVER! HA! I have to limit myself every evening so I can relieve the nurses and feel like I never get anywhere or anything accomplished! I do but its just in much smaller increments! I'll make it but it just takes me forever to get it done! I need to wear Nicholas' hat......Git R Dun! I don't know why its any different this year than any other...I just seem to dread this Christmas......please say a prayer for us.
Pray for all the others in hospital or getting prepared to go! They all need our prayers. What can we do to help someone this Christmas season? Take the blinders off and lets help each other through out the year...make it your New Year's Resolution! Put on someone else's shoes and walk in them for a while! Look deeper than the surface, see the worry?, heartache?, loneliness?, numbness?, and sadness? Now, what can we do to help? Kindness goes much farther than you think! It can brighten someones entire year! Go the extra mile! It will make you feel better as well and God will bless you for doing it!
Git R Dun Miracles, Blessings, and Bear Hugs,
Donna
Monday, December 8, 2008 11:32 AM CST
Hello,
Nicholas received platelets on Fri, his counts were: Plts 4k, Hgb 8.3, ANC was over 1000...? exactly! His Ferritin level is 2815 and too high to give him red cells. He will get red cells this week. I'm sure his Fe level was high because he received two red cells while in the hospital. He seemed to be having trouble recalling info in school and I think he needed them but we have to do what is best for him overall. The big picture has to be considered I guess!
We had the children's Christmas party on Sat and Spencer helped the clown the entire time we were there! Ms Babbles said he really did help her and he just beamed! He loves Babbles! Then, afer we came home, we had a photo shoot! After Spencer's inital little fit, he posed really well! The photographer was really sweet and nice with them and they loved her! Nicholas posed in several of the photos but didn't really smile until Spencer entered the scene. Then, they both became clowns! I'm not sure just how many good photos she captured! Some were silly ones of Spencer doing his usual poses but I'm sure some were great too.
Nicholas has decided he wants Toy Story 2 characters for Christmas! Do they still make Zerg? I'll keep looking! Goodness! He did get to speak to Santa yesterday! Santa has been sick but I think he will visit again this year! I cannot believe its Christmas time already! Where on earth did the time go? I think I'm in a major fog or blur and totally exhausted that is for sure! Hopefully, I will get back on track and keep putt putting along!
Please remember all the ones in bmt or in the hospital. Alicia does get to go home on a visit for Christmas and that is wonderful I'm sure. Pray for the families that don't get to go home for the holidays. Being together is the most important but home would be nice too.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, December 3, 2008 8:39 AM CST
The Allums are sponsoring a FREEEEEEEEEE "Cheek Swab Kit" online bone marrow drive in honor of James Christopher!!!
Dear Friends and family,
We are holding an online bone marrow drive in honor of James Christopher during the month of December. Please share the following information with family and friends. You can help us find a match. Easy cheek swab testing. To order your free testing kit go to: http://www.dkmsamer icas.org/ category/ donors/become- donor/request- kit-mail
Please specify that you are testing in honor of James Christopher Allums. Although testing is free this month, donations for tissue typing are greatly appreciated. We are in a race against time to save his life as well as the lives of others.
James Christopher had a great birthday and a wonderful Thanksgiving.
Chris and I had the priveledge of meeting with Senator Mary Landrieu tonight and discused funding for bonemarrow drives, research, testing and cord blood banking. She seemed very interested in helping.
Please help us share the gift of life this Christmas! Wouldn't it be great to find a match for someone this Holiday Season? Just think, your email could be the one that SAVES A LIFE.
Merry Christmas!
The Allums Jer. 29:11
James Christopher's Website
Please order your kit today and join the registery! You may be the perfect match for someone today!!!
Are you my perfect match?
Perfect match Miracles, Blessings, and Bear Hugs,
Donna
Monday, December 1, 2008 12:48 AM CST
Hello,
Yes Spencer had to have glasses too! He has been complaining with being dizzy, nauseated, and a headache. He woke up with one eye blurry and the eye dr had an opening on Wed! He is farsighted! He can see pretty good but his eyes were continuously trying to focus which was causing eye strain and the headaches! I think we just caught it early! He did have Bells Palsy at about 6 months old and again around 1 year old. Bells Palsy can dry out the cornea and cause damage but I'm not sure it causes this problem. Spencer said he could see much better and has worn them every day! I think he looks adorable.
Nicholas is doing ok, no problems that have developed. We did get some of the decorations up and they look adorable. I'll take some photos. Overall, we have had a wonderful Thanksgiving Holiday. We are very blessed. No way to measure just how blessed we are but God is faithful.
Spencer and I had a long talk and he wanted to know about Santa. I asked him who he thought the gifts came from and he said, "You all!" He needed to know for sure and now he knows. He seemed like a burden had been lifted! He keeps saying he doesn't want anything for Christmas. He wrote on a list..."Nothing! I want my brother to be happy!" It brings tears to my eyes, every time I think about it! He had a list started but says he doesn't want anything now! I'm sure that will change the closer we get to Christmas! He went with us to the last transfusion and acts troubled about something. I think we need to talk some more! I'm sure he is worried about Nicholas. See why I need prayer?! I really do!
Pray for all the children in bmt or still in the hospital. Pray for all of us, for strength, courage, and wisdom.
Christmas Miracles, Blessings and Bear Hugs,
Donna
Friday, November 28, 2008 11:52 AM CST
Hello,
We had a wonderful Thanksgiving! Enough food for an army to eat and then some! Mamaw and Papaw were our guests for dinner and we were so thankful to all be together another year. We each stated what we were thankful for! Thank God we weren't in the hospital!!!
Nicholas is getting platelets today. His platelets are 8k, Hgb 9.9, and ANC is 1120. They should be ready to infuse shortly! Hopefully, he will not have any allergic reactions to them! We have my other baby with us too. He has has his tradional Pizza for dinner and they have been watching cartoons! I enjoy watching them play together and listening to them. Spencer says, "Hi!"
Sissy Bear is visiting her son and I'm sure they are having a ball with Jack. He turned 1 year old on Wed the 26th and I know he is having fun! I wish we could have visited with them! He is so sweet and precious! I'll post some photos one of these days when they send me some.
The boys enjoyed decorating the tree last night! Nicholas would put on a few ornaments and then sit down to rest. He has been sleeping in late too which is very unusual but seems ok. They are anxious to put up the rest of the villages this evening. I'll try to get some photos of them decorating it!
Hope you all are having a wonderful weekend and holiday season.
Praying for all the children in the hospital.
Praying for all the families too.
Thanksgiving miracles, blessings, and bear hugs,
Donna
Wednesday, November 26, 2008 7:49 AM CST
Hello,
I have my baby with me today! He has already sneaked up on Libbey and scared her to pieces!! He is rotten! He has been complaining with one eye being blurry. He has mentioned it numerous times over the past two days. They are going to work him in this afternoon at the eye drs! I'm really concerned with his history of Bell's Palsy, it all clicked! We'll see what the eye dr says.
Nicholas is doing good! He is still asleep this morning! The other morning, the blanket was beside of his head! I moved it back over him and wondered why it was there! That evening he told me....."Mom! You all snored so loud I had to put the blanket over my ear! You kept me awake!" I couldn't help but laugh! Maybe he needs some extra sleep this morning to make up for snoring bears! He is a hoot! He has been so sweet and snuggly! Just about every night I have to kiss his fingers, one at a time and I have to kiss his imaginary thumb too! Yes, he pretends to have thumbs. It breaks my heart.
Thanksgiving is not a day, it's a Christian's way of life! I saw that on a church sign and it's so true! We that are Christians and have a chronic illness in the family tend to see more and more to be thankful for. Each second, minute, hour, day, week, month, and year that we are all together is such a blessing and yes, we are thankful for the time God has given us with our children and our parents. Tomorrow, we will celebrate with thankfulness to God for all HIS blessings. They all come from God!
Please be much in prayer for the Dietz family as Westin is beginning treatments again. Remember Alicia, Tyler, Natalie, Ant, and all the ones that are in hospital during the holidays.
Thanksgiving Miracles, Blessings, and Bear Hugs,
Donna
Monday, November 24, 2008 7:43 AM CST
Hello,
Everything is ok! Nicholas received his platelets on Fri and his counts were: platelets 14k, Hgb 11.3, and his ANC was 1418+/-... can't rem!!! I guess those red cells really helped his HGB! I was tickled his counts were so high! When have we seen a hbg of 11?? How I wish his little system had made them on their own. That just isn't to be at this time. Yes, I still have hope that his marrow will be healed. That is a hope I will have until his last breath! or mine! I keep asking. His little bones are so empty! I know God is able.....all He has to do is speak and it happens! Whisper, think, breathe, sigh, bring us sunshine all the time and it happens the way He has planned! It's our acceptance of HIS plan, knowing all is well because of HIM, trusting in His plan that makes this journey what it is. God is the future. I trust in HIM! God is good all the time!
Spencer is fine too. He stood up front at church yesterday and sang in the congretational singing, he was so sweet and precious! He kept looking at me and smiling. I love my precious pup!
We enjoyed a wonderful family time with Sissy and Daddy Bear, Mamaw and Papaw as well as Mamaw Boggs yesterday! It seemed like forever since we were all together! I guess being in the hospital threw me off schedule! I'm just trying to get back on track!
Please remember all the families in bmt, or hospital! Dianna is having a rough time right now, Alicia is doing somewhat better, Dylan has a rash and temp, too many to name! Rem Debbie, BJ's mom, she was in a car accident. Remember the Pearl family during their struggles. Rem the Dietz family too.
God's Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, November 19, 2008 9:42 AM CST
Hello,
I received a phone call before I made it home yesterday evening. It was his nurse Ms Billie and she couldn't get his PICC line to work properly. It flushed with saline and then she began his antibiotic and it wouldn't go in! She took it back off and tried flushing and it wouldn't work! I told her to try heparin and it still wouldn't work. I tried it when I got home and it was sluggish but it worked. I put heparin in it and let it set a few minutes and it flushed on through. I flushed with heparin again, then saline, and then we tried the antibiotic again. It worked! Praise the Lord! I had already called ahead and they arranged for me to go on the peds floor to let them admininster TPA(Actovase that dissolves clots) to unstop it! Thank the Lord we didn't have to go!
I'm thinking he probably has a little more platelets than normal because of the transfusions this past weekend! I'm so glad its working though. Billie and I held up well until it was overwith! Then, we swooshed, sighed, and began breathing ourselves! Dad was happy too! Nicholas got scared too and naturally, he was one happy boy when it finally flushed! God must be carrying us right now as there is no other logical way to explain how we are still going on! This last hospital stay really hit me hard. As long as my baby is ok, we are ok though! Not kicking too high, or running too fast but we are persevering!
Spencer enjoyed his day with Sissy, Mamaw, and Papaw yesterday! I think he would have stayed there! I lured him home with Pizza! HA! They were on a two hour delay and Mom spoiled him by taking him to school this morning! He is so sweet! He drew us a picture...one red heart in the midde ..."I love you Bro!" Then, like a bleeding heart plant, he drew pink hearts..with "I love you Mom, and blue hearts with "I love you Dad!" It was so cute and precious! He had to write his summer favorites and the first thing on the list was.....Camp Sunshine!, second was "Snuggling with Mom and Dad!", third was "ym and recess!" I thought it was priceless!
Praying for all the children in bmt, hospitals, and fighting the biggest batttles of their lives. Praying for strength, courage, and wisdom for the caretakers.
PICC line miracles, blessings, and Bear Hugs,
Donna
Tuesday, November 18, 2008 8:49 AM CST
Hello,
This is what was wrong!! 
From Nov08
I went by my gut feelings and changed out his trach yesterday evening. If it hadn't helped, I was taking him to have his lungs scoped!! It was no wonder the air was going up through his vocal cords and not through his trach! I asked Jeff to cut it open with his utility knife and sure enough it was totally blocked with a blood clot. It was about an inch long! When I put the new trach in Nicholas immediately said, "Mom, I can breathe!" and instantly began coughing stuff up out of his lungs! Its hunt and peck to find out what is wrong with him all the time! I told you yesterday that he was a puzzle! Thank God that piece of the puzzle is in place and fitting just fine! Whew!
Spencer is enjoying a day out of school today! SNOW!!! I cannot believe they have missed a day already due to snow! I hope that isn't an indicator of the school winter season!
Pray for all the children in hospital or getting bmts. Pray for the decision making process for those getting prepared to go for bmt......
Breathing Miracles, Blessings, and Bear Hugs,
Donna
Monday, November 17, 2008 7:00 AM CST
Hello,
Nicholas is HOME!!!!! We arrived at home yesterday around 5ish! Dad had us a wondeful meal waiting on us and it was so welcomed! Nicholas actually ate and ate (chewed and spit back out!) and was so happy to be home! He is feeling better. He sounds really dry and hasn't coughed up anything at all. He sounds like he has his passy muir on and he doesn't!!! I'm not sure what is going on. He isn't coughing up blood either so that has to be a good thing. He did receive another round of platelets before we came home, that made two packed red cells and two platelet transfusions while he was inpatient! I said Thank God we are home and Nicholas said, "I've already said that when I was patting Dad on the back! Thank God I made it home one more time!" He asked me if he didn
He is very nauseous this morning. He told Billie, "This us just not my morning!" He isn't feeling well this morning but he is trying too. He is amazing! He pushes himself so hard! He wants her to play "Catwoman and Alein" with him today!
He is so complicated and so many things could be wrong......trying to figure out what is wrong is like working a double sided puzzle! Trying to get the correct picture is nerve wrecking! A couple of the pieces fit together and you think that it is corrrect and then along comes another piece that could work too! The entire picture can change with each piece!
Praying for all the ones inpatient and getting bmts. I'm exhausted and know what staying in the hospital days on end is like! God is always there and gives us strength when we don't feel like we can make it!
Puzzling Miracles, Blessings, and Bear Hugs,
Donna
Saturday, November 15, 2008 11:09 AM CST
Hello,
Nicholas is feeling a little better. He is receiving another red cell transfusion. His HGB came up to 8.4 and they want it higher, around 11.0 to help him fight off this pneumonia. He is so congested and just cannot seem to cough up much. When he does, it will start bleeding again. I think he is just irritated in there because it has stopped bleeding for the most part. He slept for the most of the day yesterday, actually about 18 hours. He is smiling and aggravating the drs a little....flirting a little!!
I did have him laughing with the little bat at 6 am!!! He has a pulse ox on his toe and I pretended the bat thought it was a cherry and was trying to eat it! Of course, it got the cotton sheet in it mouth! He cracked up! It was so good to hear his little laugh and see him happy! Oh! He was so sick! Hopefully, tomorrow he will be more on the mend. His trach culture is growing something! I'm sure it is MRSA Staph...as usual.
Spencer is better! He didn't throw up yesterday at all! Guess who was sick yesterday though...Nicholas' nurse Becky! She was queazy Thur and Fri it hit her full force!
Pray for Nicholas and all of the family. I'm exhausted of course! Its hard on Spencer. Yesterday, when I called him all I heard was, "I love you Mom! More than anything! I love you so much!" He said this several times! Basically, all he said! Pray for all the ones in bmt.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, November 14, 2008 7:08 AM CST
Hello,
He does have pneumonia in his right upper lobe. He coughed up lots of blood during he night and the platelets arrived at 6 am! They are in and the red cells are getting ready to begin. He didn't sleep for more than an hour at a time all night long. He is very short of breath and as he got worse last night, I asked for an xray! Sure enough! He sounded pretty good when we first arrived but around 3 am he began crying and saying his right lung was hurting! I knew then! That is how fast it hit him! He began with chills and then the fever spiked. I packed up and left with him! I know all of that was in reverse order but I'm asleep! HA!
It was so hard leaving Spencer, knowing he didn't want me too and him not well either! He slept all evening long when we got home yesterday with him! Thank God Dad is with him today feeding him pickles! That is what helps stomach viruses! HA! He is too funny! He was so hungry last night but kept throwing up Sprite and ice!
Nicholas actually seems to feel a smidge better this morning!
Keep praying!
*****************************************
Sissy Bear here! Nicholas is in JC Hospital. By the time Donna got him there, his temp was 102.8. He complains about hurting in his right side, like he does when he has pneumonia. His platelet count is 3 and hemoglobin is 6.5; his ANC is low; he doesn't have any thing to fight infection. Please remember him and the family in your prayers.
Spencer is home today. He had to be picked up from school yesterday; he has a stomach virus. He ate some dry cereal this morning and then asked for pickles!!! 2 pickles for breakfast!!!! Jeff is home with him today; I'm sure he will be kept busy carrying pickles to Spence!!!!
time for work.
Thanks for thoughts and prayers.
Wednesday, November 12, 2008 7:49 AM CST
Hello,
I must have jinxed my house! I went home and Nicholas was complaining of a headache. His temp was 99.6d. He ran a low grade temp for the rest of the evening. He didn't feel too warm to me this morning but I will call Ms Billie and see what his temp is today. He ate some ice cream last night so maybe that is why it didn't go any higher! I can dream can't I!? As if he ate a huge amount!!!
I just spoke to my angel and he is still running a low grade temp this morning. He is making me a surprise today! He kept saying he was going to make it on Wed and he held out until today. I think it is a birthday card! He made one for Bub yesterday and it was so cute!
Please remember all the children in bmt or getting prepared to go to bmt, and some are on their 3rd and 4th transplants! Time is so precious....be sure to enjoy and appreciate your healthy children, healthy parents, and healthy spouse!
Spoiled by Jesus.......I kept thinking of what I wrote yesteday and just loved it! Don't you like being spoiled by Jesus? He has a store house full of blessings! All we have to do is ask and they are ours! What a blessing it is to live, breathe, run, play, smile, talk, sing, shout, cry, see, walk, touch, feel, smell, and to feel the Holy Spirit in your soul! God is so good! There is so much beauty all around us, if we would just look! Even in the midst of a storm, there is beauty and a peace that passeth all understanding...God's peace.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, November 11, 2008 10:28 AM CST
Hello,
Today is a very special day, the day God blessed our home with a precious baby boy we named Spencer! He was so sweet, soft, and snuggly! He wasn't content unless he was touching me or me touching him in some way or the other! It was so precious! I remember the nurse coming in the room in the middle of the night and looked in the bassinet to check on him but couldn't find him! She asked, "Where is the baby?" He was lying beside me on the bed next to my side with my hand over him. She couldn't see him at all! She wanted me to lay him back down but nah, I wanted him close to me as well! We brought him home and Nicholas didn't know what to think about him! That small little fellow with a loud voice! He wouldn't let anyone take him home with them! He would get furious if anyone even mentioned it! He would throw his little arms over his ears when Spencer cried and would cry too. He still cannot stand for babies to cry! He soon got use to him and knew what he needed to stop him crying! Now, eight years later, he will still holler at me to get something for Spencer! HA! Eight years! I cannot believe how time has flown! Love his little heart! He has had more than his share of heartache and disruptions that just cannot be helped. He could be spoiled rotten but he is a good child and happy for the most part! He has his moments like we all do but always smiles on the other side of the storm. Today, I took cupcakes to his class for their snack! He really loved it! His little eyes lit up so much and he thanked me two or three times! Waaaaaaaaah! Yes, I'm crying! He is so sweet and I love him so much! His Dad was making biscuits and gravy for his breakfast this morning! He LOVES biscuits and gravy and will eat it all day long! Yes, I guess we do spoil him but he is worth it! I called him and sang H Bd Sunshine to him! He went "aaarrrraaaahhhhhhhh" like a kitten! HA!
Nicholas is fine and I'm sure he is making Spencer a card today! Ms Billie will help him, no doubt! No more fevers! He seems to be doing ok this week but he is really pale. I'm sure he will need red cells on Fri! He has coughed up blood off and on but not too much, just a tinge. Bless his heart, its always somehting! He says, "I'm just tired!" He made several hundreds yesterday evening in school but I can tell a difference in him.
Spencer is going to participate in the St Judes Mathathon! I'll create him a link and you can donate online if you want too. You can send a check to him written to St Judes if you would like to sponsor him. All the proceeds go directly to St Judes! He brought the trophy to Coeburn Primary a couple of years ago and hopefully, he will beat his own record! Thanks in advance!
Remember all the ones in the hospital or getting prepared to go! All the ones fighting battles bigger than mountains, need your prayers. Pray for strength for the families.
"Spoiled by Jesus" Miracles, Blessings, and Bear Hugs,
Donna
Monday, November 10, 2008 10:37 AM CST
Hello,
As you can see in the photos, we celebrated Spencer's 8th birthday this weekend. The children each made their own pizza and they really had a fun time doing it! It was fun! They seem to enjoy it and had fun playing with all the toys! Spencer was really tired from the Boy Scout camp out all weekend but I think he was pleased with everything! His birthday is actually tomorrow the 11th!
Saturday, Nicholas woke up sick with a temp but he responded to Tylenol. I was worried that we would have to go to JC but we didn't! I'm not sure what is going on unless it was viral. He seems to be ok now. No fever since then either! He did this on Thurs too. I'm just so relieved that we didn't end up back at the hospital. He said, "Mom, That was a close one, I just about had to go to the hospital didn't I?" He knew it was too close for comfort! I think I need to email them and let them know what happened. They may just put him on another round of antibiotics. My gut feeling is...it will happen again and get worse each time.
Praying for all the ones in bmt or getting ready to go. They need our prayers and the families do too.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, November 7, 2008 7:14 AM CST
Hello,
We went yesterday for platelets and his counts were: Platelets 9,000, Hgb 8.8, and his ANC 986. This ANC is worrying me! It is his ability to fight off infection and it should be above 1500 for normal folks! Nicholas has been on medicine to boost his white cells called Neupogen for over 2 years now. He is getting a high dose now on a daily basis and it has been dropping for a while now. Yes, I'm worried. He did get platelets yesterday and he did well with them. He was coughing up blood but it had stopped by the time we arrived at the hospital. About 4:30 am yesterday morning, he woke up freezing and I checked his temp which was up some and remained up all morning. They drew blood cultures while we were there but he didn't have a temp for the rest of the day!
My Aunt Louetta that lives in Oregon passed away yesterday afternoon. My heart goes out to the family. My Aunt Erma's funeral is today. Spencer went with us to the viewing last night. He asked me a blue million questions and I knew he needed to know the answers. I wanted to bawl but held my composure by the grace of God. I guess I could cry a river of tears if I'd let go and do at various times but I don't think my heart ever gets emptied completely. There just isn't enough time to waste on crying. I'm just in la-la land!
I'm having Spencer's 8th birthday party at home on Sunday, Nov. 9th at 2:00 PM! Thanks Carolyn for correcting me! What would I do without friends to keep me in line!?
Pray for all the ones that need a boost. All the ones inpatient or getting ready to go, need our prayers.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, November 5, 2008 7:21 AM CST
Hello,
Please remember Philmon and Erma's family as she passed away last night. Not sure of the arrangements yet so keep them in your prayers. I'm heartbroken. She was the oldest recipient of a transplanted kidney in this area. I'd guess around 40 some years that she was transplanted. It had failed and she had been going for dialysis for several years. She has always been my life long heroine! She has bounced back so many times....like a cat with nine lives! She would be bad off and then the next thing you knew she would be better and out driving again! I love her and always will! She has always been an inspiration to me! Philmon too. He has been the ideal husband, caretaker, and just a great role model for all of us! He is a hero in my eyes too! Thank God for uncles and aunts that are God fearing and true inspirations.
Nicholas is doing ok so far this week! He has been a little moody but other than that he has had a wonderful week. Last night as I was changing his PICC line dressing, he asked, "Mom, if something happened to you and you go to Heaven, who would change my dressing?" He is a little worry wart and comes by it natural! He is a little Mamaw! HA! Then, I just had to dream all about it! I dreamed I had a bloodstream staph infection and was in the hospital on antibiotics! Goodness gracious, I can't even have good dreams! I dreamed I was so tired and so sleepy! I think that was true though! I slept but woke up early!
Please pray for the nation! Pray for the children in bmt or getting ready to go, making decisions that are hard to make! Pray for Dylan, Alicia, Sam, Justin, Nick, Natalie, Tyler, Helen, Dianna, and the families as well.
Missing Aunt Erma already, Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, November 4, 2008 7:46 AM CST
Hello,
My prayer for to day is......God have mercy on America! In God we trust, I pledge allegiance to the AMERICAN FLAG! Exercise your right to vote and pray for America. I will not vote for anyone that HATES the USA! I'm amazed at the flock of followers that Obama has! He has them so snowed! If he wins the presidential election, there will be change but not the change that will be beneficial to Americans! I'm sure you don't want to hear anymore about this election and I normally do not use this site for any other purpose than to update on our son's journey with FA but Obama scares me! Spencer said they voted in the primary school yesterday and McCain won! He also won at the High School! I asked him what the total was...McCain..90 something...votes or percent, I don't know. I asked what Obama received and he said, "Less than McCain!" HA! He is rotten!
Now, on to the reality of Nicholas' world! He is fine so far! No more coughing up blood. He was short of breath when he first lay down last night. Not sure what caused that but he was struggling for a few seconds and yes, it paralyzed me and struck fear in the depths of my heart! I think it woke me up and made me realize that I can never let my guard down. Even when he is ok, he could get sick really quick!
Today, Spencer is hanging out with Dad! He didn't want to
run around with Sissy Bear today! They were going to the hospital to see my Aunt Erma Jane. She is in ICU in JC and has lung cancer. She has had a heart attack and stroke. Please remember them in your prayers. Papaw's sister, Louetta is now on hospice and needs your prayers as well. Cancer is prevelant in our family.
Research has revealed that two of the genes that cause FA also cause breast cancer or is real close to the gene that causes breast cancer. That is what your donations to FARF do, fund research to reveal these genes and what their role is. I think everyone was surprised when it revealed to be close to cancer causing genes! I'm praying they will find a cure! I know its too late for Nicholas but it could save someone else's life. Make someone else's life easier to live....without having to watch every move they make, not having to go to the hospital every week for transfusions, not struggling daily with pulling his pants up and down to use the bathroom, and not being too tired to write, draw, or play. Thank you for donating on Nicholas behalf and in his honor. If you are thinking of where to send your yearly charity funds to, please consider Fanconi Anemia Research Fund, 1801 Williamette St, Suite 200, Eugene, Or 97401 Online donors, send to info@fanconi.org and put Nicholas in the memo area. Thanks from the depths of our hearts.
Voting miracles, Blessings and Bear Hugs,
Donna
Monday, November 3, 2008 1:40 PM CST
Hello,
I think I forgot to update on Fri transfusion: Platelets only and it went well! He went as "Dracula's my name, drinking blood is my game!" Dr K went as a pirate and child life specialist was a witch! Nicholas loved it! He may have kept the Dracula face on for about an hour! He cannot stand anything on his face! I was surprised it lasted that long!
We came to Mary Bears and she had them pumpkins filled with chocolate goodies! Spencer dressed as a Ninja and Nicholas as Dracula again! I took them to a few places and then we went home and they played and ate chocolate of course!
We had a wonderful weekend overall! Mamaw received wonderful news that she doesn't have to have surgery! PTL! We had a wonderful church service on Sunday and a wonderful birthday dinner afterwards! Spencer decorated mine and Sissy Bear's cake! It looked so cute! Thanks Dad for the wonderful meal! He is a wonderful cook! I taught him well! HA! His mom ate with us too! It is always a blessing to have our parents with us! I value each and every day more and more!
Pray for all the children in bmt or getting ready to go! Alicia is doing much better, Dylan is having a rough time with mouth sores, and Tyler is out and doing good. Pray for all the ones making decisions about bmt too.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, October 29, 2008 10:02 AM CDT
Hello,
Did you like the new slideshow? I thought they were adorable of course! Spencer dressed up for career day and went as his dad! He looked so cute! He wore a tan t-shirt, flannel plaid over that with his carpenter jeans, and work boots! He borrowed his dad's hat too! He had to have a belt and the only one that fit had a bucking broncho on it! He said, "Dad's has a deer on his but this will do!" He loves his dad! He says he is going to be a carpenter just like his dad and find snakes like Steve Erwin on the weekends! He is so funny!
Nicholas seems to feel a little better. He has been coughing up blood each day though. Last night, I accidently hiccuped and he laughed so hard and then screamed, "Ouch! My back! Did they take tissue out when they did surgery?" I picked up a roll of bathroom tissue and asked him, "This kind?" which threw him back into a laughing fit again! He only has these little catches when he laughs really hard and has pneumonia! I do believe he still has a touch of it! Maybe that is where the blood is coming from, the deep part of the lung. His secretions are really thick at times. I know....too much info! I ran out of antibiotic and then it didn't come in until yesterday so we are now back on them and hopefully, that will help everything!
I don't know how the subject came up but it did last night and Nicholas said, "I want the dog-gone truth! Is Santa real?" We had this conversation last year and I thought he knew. I told him the truth and that I had always told them the true meaning of Christmas. That Jesus was REAL, the true and only reason for the celebration of His birth. After the truth was told and we were suppose to be quiet while pottying, this is what caused the laughing to begin with...Nicholas said, "I wondered why he(Santa) had black young hairs on his arms!" Yes, I lost it!
THEN, he wanted to know what else wasn't real! Mermaids? Peter Pan? He said, "I didn't believe in faires anyway! Miranda is not even an elf! Those seven reindeer couldn't fly and lift that sleigh and that fat jolly man and all those gifts off the ground anyway, not even a hundred could!" The only thing he didn't mention was the tooth fairy! Then......"That JC Santa, is his hair a wig?" I told him no, that was his real hair and beard! Then he asked me about his voice, in which I told him that was his real voice too! He said he couldn't wait until Christmas, he was going to say "Hello Ken!" I told him he better not spoil Christmas for Spencer! Spencer told me the other day that a little girl on the bus said the parents got the gifts anyway but he didn't believe her! Who knows how Christmas will be this year! Santa, you have your work cut out for you again this year! Nicholas said he knew if you were real that he would have been able to see the reindeer and he never had! My baby is growing up!
Please rem Mamaw today as she goes to the dr. She seems to be doing better overall though. Rem all the children in the hospital for bmts.
"Santa better dye his arm hairs" day, Miracles, Blessings and Bear Hugs,
Donna
P. S. Happy Birthday Sissy Bear!
Monday, October 27, 2008 8:44 AM CDT
Hello,
Awww, what a weekend! I received a call before we were even home that they were taking Mamaw to the ER! They had to call a rescure squad for her, she was too weak to walk to the car. I ended up back at the hospital until around 2 am with them. Her blood sugar was high and her blood pressure went to 217 over something!! We still aren't sure what was wrong and she began vomiting on the way to the hospital. She may have had a virus or the beginning of a uti. Still not sure but her ekg was ok and all the tests were ok. She has to go back to the dr today. The ER dr called her yesterday to check on her. I thought that was so sweet. She was still a little weak but seems ok. Nicholas called her first thing on Sat morning to see what the dr said!
Nicholas did ok with his transfusions on Fri. He just doesn't act perky enough to me. Especially last night, he was just sitting around and was tired. He hadn't physically been active and was still tired. He even lay in the floor to roll a ball with Spencer! I think we may need to change his antibiotics since I'm out of what he was on anyway.
There was a therapy dog at the hospital on Fri. Caesar, a Great Dane made his rounds! I think that is the biggest dog I've ever laid eyes on! He was beautiful! Nicholas loved him. He looked like a miniture pony! Nicholas could have ridden him and he would have been too high! Nicholas fed him a cracker and cheese and Caesar had to say please before he could eat! He began slobbering and Nicholas began getting sick, dry heaving, and gagging! It was hilarious! Caesar had to leave! Nicholas gets sick over everything! He has the weakest stomach on the planet!
Spencer is doing ok but I know its hard on him sometimes. He worries me all the time. He copes well for the most part. He was so helpful to me this weekend. I told him he may just get some spending money and he said, "Mom, I'm not worried about the money, I just like the work!" Awwwwwwww, how sweet and precious! He likes to be helpful and feel important with his "chores!" He was so helpful. He set the table for every meal. He helped make fried apple pies. He helped me clean and take out old magazines to the trash. He was a busy bee! I was so exhausted Sat that I had to take a nap. He only woke me up a couple of times! HA! He said, "Mom, you've been asleep for 3 hours and I'm hungry!" Tooo funny! I wonder how long I would have slept!
Keep praying for all the children in bmt. Alicia is having a high white cell count and Anthony's counts are dropping. Please storm Heaven on their behalf. Sam is doing great! Pray for all the ones making decisions right now that they will find the peace of God during this process.
Thankful for Mamaw's Miracle, Blessings, and Bear Hugs,
Donna
Friday, October 24, 2008 12:49 AM CDT
Hello,
Nicholas' counts are: Platelets 7, Hgb 7.8, and Anc is 1448. I feel these are not correct as his Hgb was 7.9 on Monday and we are giving him red cells right now! His platelets have already been transfused! I don't think they are correct either because he is bruising really bad and hasn't been that active! Next weekend is halloween and I don't want to be getting home late either, so that is another reason we went ahead and got the red cells today. He is doing much better overall and did well in school yesterday as well.
He is so funny! This morning we were behind an 18 wheeler hauling coal and it was moving real slow. Nicholas piped up, "I think that truck has been going for a week!" I knew immediately what he was thinking! Too funny!
Thanks for the three online popcorn orders that Spencer received! He did great and thanks to Becky for helping him sell as well! He owes her big time! Thanks to all that ordered!
Keep praying for all involved in bmt. Dylan is getting his bmt today! Happy Re-birthday to him and his family! What a tremendous journey to begin on and what a miracle if it is successful! Miracles do happen....we have to look and acknowledge them. God is good!
"Taking a week to get somewhere" Day, Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, October 21, 2008 7:13 AM CDT
Hello,
We are out of the hospital! As of Mon, around 3:30 pm, we were home! He did have a cbc while in there and his hgb was 7.9, platelets were 32k, and his anc was 1178. He will definitely need platelets and red cells on Fri. I'm surprised they didn't tranfuse him before we left. I think this round in the hospital was a blessing in disguise! His coughing has been more than productive! He has coughed up so much that I'm sure he was on the verge of pneumonia! I'm thankful he is responding to the antibiotics. He hasn't had a fever throughout this entire ordeal. That is what bothers me, having no indicator that something is wrong. His temp has actually been below normal. His only symptom was droopiness, which is normal when his blood is low.
I was thinking this morning, (I know that is dangerous so put on your hard hats!) that I'm going to change his nickname to Wonder Boy......no, Wonder Bear! Every time his is droopy, its....... I wonder if he needs red cells, I wonder if he has a bacterial infection, I wonder if its a virus, I wonder if he has a PICC line infection or I wonder .......Yes, I think it fits perfectly!
When Spencer came home, he ran to Nicholas and said, "Bub, you are home!" Nicholas said, "Yes Doll, I'm home!" Awwwwwww, too precious.
Sissy Bear told you about his comment to the nurse! He is getting too fiesty! He is borderline rude! I had to give a good talking about others having feeling too! It was hilarious though. He told the resident, "Everytime I'm in here, you all bother me too much and don't let me sleep! I'm going to try to get some sleep but I never can!" Yeah, right! He was so hyped up, it was after midnight when he went to sleep! I shouldn't have drank that cup of coffee either!
Please pray for Natalie, Alicia, Anthony, Diana, and all the rest in bmt or in hospital. I'm sure they need our prayers as well as the families.
"Wonder"ful Day, Miracles, and Bear Hugs,
Donna
Monday, October 20, 2008 9:04 AM CDT
Sissy Bear here!
JC Hospital called Donna Sat. night for Donna to bring Nicholas in bc something was growing in culture(they did blood work Fri when he went for platelets. He has been droopy and not feeling well; we knew somthing was going on. His color is not right.) They started him on 2 different antibiotics Sat. night. They should know what is going on today and maybe come back home once they know exactly which antibiotic to give him.
I called Sat night to check on them. Nicholas was telling the nurse not to bother him during the night; he wanted to get a good night's sleep. He's the boss!!! I'm sure they followed his instructions!!!!!! You know how it is in the hospital.
Please keep him in your prayers. Pray for my siser; she is soooo tired. Pray that God gives her added strength and courage. love Sissy Bear.
Friday, October 17, 2008 12:03 AM CDT
Nicholas' blood cultures showed up positive and we are now inpatient! He will have to be here until Mon! We arrived last night around 9 pm and he is on vancomycin and cefepime, two iv antibiotics that are considered big guns. The room is really cold and we chilled all night long. He is still fever free for which we are thankful. Please continue to pray for us!
***************************************
Hello,
Nicholas' counts are Platelets-5k, hgb-9.5, and anc is 2198. He is getting platelets right now! He was really mad at Dr K when he tried to look in his ears. He said he went too far! He cried his little heart out! He then complained with a headache! I told him it was probably his blood pressure! He is still on the congested side but seems ok for the most part!
We went to the Indian Village yesterday but Nicholas didn't feel very well. He didn't stay for the entire tour and kept drooping around. He didn't have any energy but he did walk all the way back to the van. He had to walk up a big hill but it had benches all along the way and Jeff said he sat on every one!
Please rem all the ones in hospital for their bmt and the ones getting ready to go. Rem all the families too.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, October 15, 2008 6:53 AM CDT
Hello,
SANTA! That is just too funny! Nicholas was singing "Santa Claus Is Coming To Town" to the top of his lungs last night! That is probably the reason he coughed all night long though! :( He began singing and of course my batteries were down in the camera! I told him he would have to put on his Santa hat and sing it again for me and I would video it! He sang it so cute!
We have been trying to learn a new song and Nicholas wanted me to sing it last night! He has only heard it the one time we practiced on Sunday! I couldn't rem some of the lines and guess who did! Yes! He told me some of the words in the next line! I couldn't believe it! That is the difference red cells make to your memory! It helps to get oxygen to the brain in order for it to function properly! I was so tickled! Amazing! I'm sure some sleep would help me though! HA!
Dad got Nicholas so tickled last night! He was acting crazy and Nicholas laughed and laughed. I could tell it was him by the wheezing! His cold is mostly gone, he just sounds wheezy! After his breathing treatment, he cleared out some! Then during the night, he had a couple of coughing spells. I don't think anyone slept but Spencer! He had to sleep with Dad, then me, so we played musical beds for a while! I know he is somewhat worried about Nicholas and has had to get in bed with us for the last three nights in the wee morning hours. He will pet on Nicholas, especially when Nicholas was feeling so bad. I know he has so much to deal with and it breaks our hearts. You do what you have to. You live. You survive. You enjoy what you can when you can and God will take care of the rest! Only He can give us that deep settled peace that passeth all understanding!
Continue praying for all the children in bmt, Anthony, Dianna, Tyler, Helen, Alicia, Dylan, and all the ones getting ready to go....they all need our prayers.
Oxygen to the brain day, miracles, blessings, and Bear Hugs,
Donna
Monday, October 13, 2008 10:42 AM CDT
Hello,
Well, the weekend was full of droopiness. Nicholas actually lay down Sat and slept for 2 hrs, which is totally unusual. Sun, his sugar tree broke loose and his little eyes and nose ran all day. Cold meds just didn't cut it and now I'm wondering if it is RSV! Today, he is a little more perky! He answered the phone with, "This is Nicholas Boggs, how may I help you?" Rotten! He is something else! He said his nose wasn't running much today and he is helping Ms Billie! He still sounds really congested though. He has had just a low grade temp so hopefully he will get better soon! I think I'm getting it now! Sissy Bear has it too. Ms Becky was feeling sick with sore throat when she left Sat! Nicholas must really be contagious or it's just viral and in the air everywhere!
Spencer enjoyed his fishing trip and caught a 4.5 lb catfish! He slept all the way home though! He had to get up early! He still got up too early on Sun though! He is an early riser! I'm exhausted where I've been up more with Nicholas. He was really sick Fri night and threw up a total of about 4 times. I pray that Spencer doesn't get it. He was complaining with an ear ache and sore throat on Sat eve! It will be dad next!
Pray for Michelle and Alicia, as they are out of hospital today sometime and trying to live at RMH! Dianna, her counts are already coming in! Wonderful!! Anthony to continue with successful bmt, Tyler, and for the family of Stacy that passed away. Praying for peace, comfort, and strength for all the ones with cancer or chronic illness.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, October 10, 2008 12:45 AM CDT
Hello,
Nicholas is congested and was up some during the night. His platelets are 8k, hemoglobin is 8, and anc is 1920. He is getting red cells today as well as platelets. They gave him an IV dose of Rocephin and the xray is clear, so he doen't have pneumonia. He was coughing up blood by this morning. We gave extra breathing treatments yesterday to try to get a hold on it. Hopefully, he will get over this cold and be back to his fiesty self before too long. He was really droopy yesterday and has actually vomited 3 times. I think the coughing/drainage gets his tummy upset. As we came over the mountain this morning, he said his ears were popping. He hasn't had any more nose bleeds except for the one! My baby just doesn't feel well! He did feel like posing for some photos for me with a mischevious little smile! I'll post them when I can.
Spencer is all geared up to go fishing tomorrow! He is so excited! I think he is excited to be playing with the others, not the fishing part! They will be fishing for catfish so that will be different for him and I hope he really enjoys it!
Pray for Nicholas to fully recover from this little episode and hopefully it won't supress his marrow, what little he has left! Pray for all those in hospital for their chance for a new life, aka bmt!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, October 9, 2008 7:20 AM CDT
Hello,
Nicholas was complaining with a sore throat last night. I gave him some Tylenol and he also had a little nose bleed. This morning he sounds really tight and croupy. I gave him some cold medincine and began breathing treatments. He isn't running a temp but I was just waiting to see what was going to develop! I knew he was getting sick. His white count is just higher than normal! I was just waiting. I had changed his trach out on Sunday and thought maybe it was just sore from that but I guess I was just hoping. He was droopy last night as well. He seemed fine yesterday except for the ususal "memory" problem. I do believe that is stemming from low hemoglobin though but just seems to be most of the time now, even with transfusions. I'm thinking back to his flu shot as well...could be from that as well. He is one very complicated little fellow! Every little thing could be the result of so many different things and its a toss up to what the cause is. We'll just have to wait to see if anything else develops. He is afraid of losing his voice. I'm glad he finished all of his homework yesterday! He can relax today and just get treatments around the clock until school!
Spencer received straight A's on his report card as well! He is doing pretty good this year and I can tell he is growing up! Too much! He is a deep thinker that is for sure! He figures out how things work and he usually hits it on the head! I bought his a pair of high top hiking boots the other day and he wanted to sleep in them! I finally talked him out of them to get his bath! Too funny! He loves them! He is going on a fishing trip this weekend with the cub scouts! Don't forget to buy some popcorn from the link above! He has received two orders so far and we thank you for those! You can send some to the military and I think that is just so neat!
Please remember all of us that have chronic illnesses in our families. It takes lots of patience, strength, courage, and wisdom to make decisions. Pray for all the ones inpatient, Dylan, Dianna, Alicia, Anthony, Tyler, Stacy, and the ones getting to go, Will, Delia, Sarah, BJ, etc. These are just some that have FA, and there are so many more with different diagnoses! Pray for mamaw and papaw as well.
Praying for my baby, miracles, blessings, and bear hugs,
Donna
Wednesday, October 8, 2008 7:25 AM CDT
Hello,
Don't forget to click on the link and order popcorn! It helps the pack that Spencer belongs too! You can send some to the Troops and help support them. I can't rem how many tons were sent last year but it was a lot! A wonderful way to send a little home to them wherever they are! Thanks!
Nicholas is doing pretty good this week! He has been having some memory problems this week again and I think it is due to the low hemoglobin! His counts are probably dropping but hopefully, he will not have to have red cells this week. He did complain of a headache this week too, which is very unusual for him to complain about anything so we know he was in pain!
He is still cute as a button and rotten to the core! He continues to say the funniest things but I just am totally brain dead and cannot remember all of them! He and Spencer both give the best hugs and kisses in the world! Spencer wrote the sweetest sentance last night! Of course, it was about me that is why it was the sweetest! Tonight, we get report cards! I know Nicholas made straight A's! Amazing, with him feeling so bad this first six weeks. I told him last night that he was my hero! He smiled the sweetest smile ever!
Please pray for Natalie, her celluarity has dropped to 10-15 percent, Anthony to hold on to his successful bmt, PTL!, Alicia to not get a temp and get out of hospital next Monday! Yaaaah Alicia! Pray for Diana as her blood pressure and sugar levels are elevated. For all the ones getting ready for bmt, I know their hearts are so heavy! Special prayer for Maryann , Wesley gma, she has cancer and is just the sweetest, most precious lady! I love her so much!
Pray for my mom, Mamaw as she goes for more testing. She has hardening of the arteries in her brain and having the same symptoms as Alzhiemer patients. She is breaking my heart! Yesterday, someone had passed away and she said he was my old boyfriend but he was actually her sister's, Juliann's, which shows she is definitely getting her time line out of whack! She is forgetting to eat and if she has or not. Papaw will not let her cook at all and has just been remarkable with her. He canned the tomatoes this year and just surprised me to pieces! He is such a dear! He gets HUSBAND OF THE DECADE! He has really had to step up to the plate and learn how to do everything! I'm so proud of him. We are so blessed to have such wonderful, loving, God-fearing parents.
"I need a red cell transfusion" miracles, blessings, and bear Hugs,
Donna
Monday, October 6, 2008 7:45 AM CDT
If you have trouble ordering popcorn, please email me! Thanks for the orders we've already received! Spencer was so happy and smiled from ear to ear!
He also received his flu shot so he needs prayer as well.
***********
Hello,
Nicholas' platelets were 6k, Hgb was 9.1, and his ANC was 1800. He did receive a platelet transfusion and all went well. He is such a trooper! Of course, he wanted to play at Burger King but we didn't stay long. He had a Webelo meeting and we did make it to that which was fun for him.
Nicholas sang, "Thank You Lord For Your Blessings On Me" in church again. He sings it so sweet and cannot help but grin really big! As we were getting ready for church, he said, "Mom, My heart is burning to see my Father!" We all need that determination in our hearts.
We had a great weekend. God is good. We took the boys to visit a faithful letter writer! She sends them mail once a month and they really enjoyed meeting her and her son. She is a huge blessing to us and the boys love her letters! She is so faithful. Nicholas sang "You Are My Sunshine" for her!
Pray for Natalie, she is struggling right now with fluid, low counts, and sensitivity to touch. Pray for Alicia as she wants to go home. Pray for Ant and he endures the pain of a sucessful bmt! Pray for all the rest that we do not know about. Pray for Joann, as she has been having seizures! Pray for all the families involved for strength and courage.
"Burning heart" day, miracles, blessings, and bear hugs,
Donna
Wednesday, October 1, 2008 10:29 AM CDT
Please order popcorn from Spencer for the Boy Scouts by clicking on the link above. If you don't want any, you can send some to all the military by clicking on the the Military Basket and it is delivered for you! Thank you!
**********************************************
Hello,
Nicholas is doing ok! I just heard his sweet little voice! He said that his teacher wasn't coming this evening but he would do his homework, he promised! So sweet and precious! I can tell the red cells have helped him this week. He is feeling fiesty!
I told his nurse that if I had a brain I'd be dangerous! Nicholas said, "If you had a brain, you could think!" HA! HA! See how fiesty he is! I love it though! I'd much rather have fiesty than grumpy any day!
Spencer is doing good..still plugging along. Getting ready for another camp out! He was whining because Nicholas wouldn't play with him yesterday! Nicholas finally played with him and they were happy campers for a while! I'll try to upload some photos for you to see of them camping! I wasn't there when Spencer shot the bb gun and Dad wouldn't have even thought to take a camera! He hates cameras! HA!
Pray for all the children in bmt, transfusion, or treatments! Way to go Ant for changing the pain management protocal! Pray for Natalie, she has lost sight in one eyes, pray for the healing touch of God to reverse the irreversible! Pray for Alicia, Sam, Stacy, Tyler, and all the others in bmt or getting ready to go, Carter, Dylan, Sarah, and all we don't know too! Rem the families and lift them up to God, speak their name, and let your requests be known!
Healing touch miracles, blessings, and bear hugs,
Donna
Wednesday, October 1, 2008 10:29 AM CDT
Hello,
Nicholas is doing ok! I just heard his sweet little voice! He said that his teacher wasn't coming this evening but he would do his homework, he promised! So sweet and precious! I can tell the red cells have helped him this week. He is feeling fiesty!
I told his nurse that if I had a brain I'd be dangerous! Nicholas said, "If you had a brain, you could think!" HA! HA! See how fiesty he is! I love it though! I'd much rather have fiesty than grumpy any day!
Spencer is doing good..still plugging along. Getting ready for another camp out! He was whining because Nicholas wouldn't play with him yesterday! Nicholas finally played with him and they were happy campers for a while! I'll try to upload some photos for you to see of them camping! I wasn't there when Spencer shot the bb gun and Dad wouldn't have even thought to take a camera! He hates cameras! HA!
Pray for all the children in bmt, transfusion, or treatments! Way to go Ant for changing the pain management protocal! Pray for Natalie, she has lost sight in one eyes, pray for the healing touch of God to reverse the irreversible! Pray for Alicia, Sam, Stacy, Tyler, and all the others in bmt or getting ready to go, Carter, Dylan, Sarah, and all we don't know too! Rem the families and lift them up to God, speak their name, and let your requests be known!
Healing touch miracles, blessings, and bear hugs,
Donna
Monday, September 29, 2008 12:04 AM CDT
Hello,
Nicholas did fine with his transfusions! He just waited to break out in hives on Momma Fri night! He did have a couple of hives but thankfully they disappeared! He received his flu shot on Fri just before we left and did really well! He just said, "Ouch!" It has a red swollen area around it but seems to be getting better.
We did get to take him to the camp out on Sat. He really enjoyed it! He said, "Mom, pray 10 times that it won't rain!" Well, guess what? It didn't rain on us while we were there but waited until we left and then poured! Too funny! Not funny for Spencer and Dad though! It rained on them all night Fri and Sat both! They were good and dry as long as they stayed in the tent! Nope, they didn't stay there and were soaked to the brim while attempting to attend the bon fire! I think it was definitely rained out! HA! Spencer and Nicholas both received their belt loops for archery and bb gun! Nicholas did really well with the bb gun and hit the target with all five shots. He was tickled to pieces and showed everyone that wanted to look at it! So precious! Spencer really enjoyed playing with all his friends running wild, playing war. Yes, you guess it! "It was the best day of my life!"
What is the best day of your life? Is it every day?? If only we could live our lives like that, we'd all be happy people! Children can do that!
"I want to go home Gommet!", said Nicholas out of the blue! I told him I did too! He said, "Do you know which home I'm talking about!" I said, "Yes!" He said, "I want to see my Father!" and again asked me if I knew what he was talking about. He isn't sad when he says this, he is happy while my heart breakes and is ripped in two. He asked me again, "What was that woman's name that died?" I told him "Maria." He said, "I can't wait to see her again in Heaven!" I think that is the only person that has passed away that he knows or was close too. Why he keeps saying these things, I don't know. The conversations are usually out of the blue and even off the subject! Those were this weekends comments! God gives us grace when we need it, as well as strength and courage. He is always there and we are never alone. Can you say that? Most of the time, our closest friend, mother, father, sister, nor brother can be there ALL the time but Jesus is. He is carrying us most of the time, picks us up and puts us back on our feet while holding on to our hand continuously! All we have to do is reach up, HIS hand is always there to steady us, giving us the sweet peace and contentment that our soul craves.
Keep those in bmt, treatments, transfusions in your prayers. Anthony is having wonderful cell growth pains! Alicia has passed her 100th day but doing better. Sam is doing better and on the other side of the scare this past weekend. All the families need prayer, strength, and courage.
"This is the best day of my life" day, miracles, blessings, and Bear Hugs,
Donna
Friday, September 26, 2008 1:23 PM CDT
Hello,
Nicholas' platelet count was 7k, Hemaglobin was 7.0, and ANC 1809! He had had a platelet transfusion and is now getting red cells. He has been rotten to the doctors! Dr Sean will let him look in his ears and last week he told him that he had caramel in his ears! This week he looked and began gagging! Too funny! He makes me laugh! He will no be a dr that is for sure! He was nauseated all morning anyway! He told Dr Kathy that Dr Sean was his dr and that she was fired! He didn't even care that it hurt her feelings! He is feeling pesty and rotten to the core today!
Spencer had a camp out this weekend and was in fine form this morning! He was so excited! He will be doing archery, bb gun, and lots of other fun things! I will take Nicholas on Saturday and he will get credit for some of those things too! Spencer is now a wolf and Nicholas is a Webelo!
Pray for all the children in bmt, treatments, and transfusions! Pray for Nicholas and all the families too.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, September 25, 2008 11:44 AM CDT
Hello,
Nicholas is doing ok so far! I'm really surprised that he is doing as well as he is with his hemaglobin dropping! He is very tired but spirits continue to be pretty high! He had a melt down earlier in the week and everything was brought up again about his mic-key button! I told him not to "dig up old bones" and "not to cross a bridge before you get to it!" Well, he got be back last night!!! He was asking me if I was worried about his mic-key button! I told him that if he was worried then it worried me! He said with a hugh smile, "Gommit(Mom), you can't cross the bridge until you get to it!" HA! Little rotten stinker! He was singing in bed last night! I'll upload the video! So sweet and precious!
I'm sure Spencer looked adorable today! Today was "Dress as a famous person or celebrity.........he went as Abe Lincoln! I can't wait to see him this evening! He looked adorable last night, even with a batman shirt on! He is selling popcorn for the Cub Scouts! I know! Here we go again!
Please continue praying for Ms Sweetie Pie Sam, Natalie, Alicia (received good news, no GVHD in tummy), Anthony, Tyler, Stacy, Ryan, and all the ones in bmt, transfusions, and treatments! Thanks for praying for Nicholas, we cannot do without your prayers! I can see a difference in him this week and I know Jesus heard the prayers of His children. Again, our heartfelt thanks.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, September 23, 2008 12:37 AM CDT
http://www.johnsoncitypress.com/Video.php
click on the St Jude's Affilation to watch Nicholas in the news!!!!
***********
Hello,
Spencer was up at 5:30 am and hopped in bed with us! He was so excited about Wild n Crazy Day today. See photos at the end of slideshow to see his attire! He wore a red striped shirt with brown camo pants, one black ankle sock, one gray crew sock, one camo and one black shoe! He used hair gel to make one side stand up and the other side flat! I thought he looked adorable of course! I'm sure he will be tired this evening though! He is so funny!
Nicholas wanted to dress crazy today too but he probably won't remember. I'll take photos if he did! He has been outside playing "vampire!" This is where he and Ms Billie get under the tree house in the "cave" and tell vampire tales! He said, "I just use my imagination Gommet!" I could just hug that precious baby to pieces!
Please remember all the children in bmt, tranfusions, or treatments. Rem Anthony, Natalie, Tyler, Stacy, Alicia, Sam, Justin, Nick J, and all the families as well.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, September 22, 2008 12:58 AM CDT
Hello,
We had a good weekend. The boys attended their first baptism! A guy was saved at church and baptised afterwards. Nicholas immediately wanted to know what would happen to his trach if he was baptised! He said, "I saw how he went under water!" , then the questions flowed. Spencer thought it was pretty cool!
After church, we went on a picnic, a hike, saw a bunny in the woods, lots of deer sign, and a small snake. Nicholas just drooped around, not much stamina at all, tired really fast and we turned into a small litte outing! He really enjoyed it though. He and Spencer played with sticks more than anything! Dad taught them how to make a whistle out of mountain laurel! It was so cool! I guess I played with it the most! Nicholas couldn't get enough air to come out of his mouth to make it work, but he liked it though.
I'm sure he will be low next week and definitely will need red cells! That will make 3 weeks!!! Whooopeee! Maybe he will go back to the 3 week interval, I hope so!
Pray for all the ones in hospital. Alicia is doing much better today! Rem all the ones in bmt, transfusions, and treatments.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, September 19, 2008 10:36 AM CDT
Hello,
Nicholas' hgb was 8.4!!!! Yea! No red cells today! His platelets were 6k and ANC was 2025! That means he will get platelets of course! His ANC is coming down which means his marrow responded to the pneumonia in his lung back in August!
Nicholas told me this morning that he just lay in bed last night and praised God! SOOOO precious!
Thanks to all that are donating in honor of Nicholas' 10th birthday this month.....the total so far is $350!!! Amazing!
Pray for all the children in bmt, transfusions, or treatments!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, September 17, 2008 11:57 AM CDT
Hello,
I can tell Nicholas is feeling much better overall. It is amazing when he feels better, it really shows you how bad he was feeling. It is a gradual downgrade and you really cannot tell what is happening until he feels better! Then, its like, WOW!
I called to check on him and he was in his cape, The Count counting money! Ms Billie has been aggravating him and he told her he was going to be her worst nightmare tonight! He is so rotten!
Last night, he wanted milk-n-bread. I gave him a small bowl and Spencer a large bowl. He exclaimed, "How come I don't get much?" I explained that it makes him aspirate really easily and he wasn't even suppose to be eating by mouth! He said, "Don't they know I'm human too!" Then he said, "Mom, I'm so tired of all of this!" Broke my heart!
He is still having some issues with his memory. Yesterday evening he couldn't remember talking to me during the day...its these little incidences that are ringing my bell! I would have thought it was due to low hemaglobin causing less oxygen to the brain but as it continues, I keep searching to what could be the cause. Is it high Ferritin levels(iron overload due to the red cell transfusions)? I have found so far that iron overload can cause more stokes in the elderly and thus could pertain to Nicholas because of the transfusions. I'll keep searching this! It could also be the Exjade that he is on for the iron overload! The vicious cycle continues to rear its ugly head. Is it FA related? Who knows?
Momma Black Girl moved her kittens and I feel sure one of them isn't going to make it. I can't get to them to check on the one that is sick. The boys know all about it and we've taken photos and videos! Spencer took one but you will have to take dramamine to watch it! He sounds so sweet as he talks to them.
Please rem Anthony, he is in lots of pain and he gets his 3rd bmt today, pray for God to bless it, Alicia as they increase more meds, Sam as she battles the fevers, and all the caretakers and extended families...
Miracles, Blessings, and Bear Hugs,
Donna
Monday, September 15, 2008 2:05 PM CDT
Hello,
Nicholas did get platelets and red cells on Fri! I thought I had already updated that! His plts were 5k, Hgb was 7.3, and his ANC was 2205. I couldn't even tell his Hgb was low according to his coloring. His thinking was another story though. There was a knock at the door and we heard singing....Happy Birthday to you.....the staff presented him with a Dracula and Bat Cookie Bouquet and gifts! The Johnson City Press caught it all on video and should be able to see it on their website but I couldn't find it. If that weren't enough, he had another surprise visit from Santa! He also brought him gifts. Nicholas wanted to ask him for something. He whispered in Santa's ear, "Show me some of your magic!" and wanted him to perform on demand! TOO funny! After transfusion, I treated him to Chuck E Cheeses! He wasn't very excited at first then really enjoyed it! Overall, I think he had a wonderful week of birthday surprises! Then, Momma Black Girl brought her kittens over to the house and that just made everything right this weekend! They were so thrilled and we couldn't help but laugh at them. Spencer had to video some and we took photos! I'll post them.
Nicholas did some better with his homework this weekend. I think after he realised he HAD to do it and I asked for an attitude change, he was fine and finally got in a good mood last night, especially when he could see the light at the end of the tunnel! HA! He hates it with a passion and is having some memory problems that we cannot figure out. It is no wonder that he gets frustrated.
Please remember Alicia, she is having some fevers and tummy problems, Anthony will have his bmt wed, Natalie is still having headaches and no energy, please pray for them all and the care givers as well. Sam is back in hospital too, rem her. Pray for Nicholas and Spencer.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, September 11, 2008 6:41 AM CDT
Hello,
Nicholas had a wonderful day yesterday. He didn't have any problems with his homework either! We ended the day with a steak dinner! He was so happy and even went to Papaws to see White Socks, a new tom cat that helped itself to the cat food and decided to stay! He is gorgeous! Of course Nicholas named him!
Thanks to all the ones that called him yesterday to wish him a happy birthday! He really enjoyed them! He was telling me all about them. When I asked him who all called, he couldn't remember though without some prompting! If you haven't sent in your $10/10yo/10th in honor of Nicholas to FARF, please do so whenever you can.
Thanks again from the depths of our hearts.
I spoke to him on the phone and he sounded different. Not sure what is going on, sort of short of breath but I'll keep a close watch on him. I think he looks bad and is not really feeling good. He seems tired to me.
I know I've missed some that sent cards and gifts so I'll just say thanks to ALL that sent them! Wow! I was surprised at the guest book entries and printed them off for Nicholas to see! I can just see him smiling! They sang happy birthday to him at the Davis Memorial last Sunday and the smile was just priceless!
I told Spencer the other day that Nicholas had a rough day and he blurted out, "He's dying!" I didn't deny the fact and said, "I think his hemoglobin is dropping." I know he needs to talk and if he only wants to state facts every once in a while that is fine, at least I know he is talking about it. He wants to sleep with us again and I know he is scared and wants the safety of mom and dad! He has lot to deal with too! I worry about him so much. I want the safety of my Fathers arms too! He has us in the palm of his hand and holding us close. I can't even walk without holding HIS hand!
Please remember all the ones in bmt, treatments, and transfusions. Pray for Papaw and Mamaw. Pray for all of us that have chronically ill children. We need strength and courage minute by minute!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, September 10, 2008 6:46 AM CDT
Hello,
Today, we are celebrating 10 of the most precious, glorious, happy, wonderful, blessed beyond measure years with our God Sent gift, our son, Nicholas. Words just cannot describe our heart felt thanks for him. I cannot believe how 10 years have flown by so quickly. His sweet spirit just radiates and blesses everyone else too! I know that you who read this site know him and love him as well. God is truly awesome and blessed us with very special gifts, not one but two! We feel honored to be the parents. What value could you possible put on 10 precious years of pure love, hugs, and kisses? Impossible to calculate, just priceless. Here is to the happiest, best, birthday ever Sweetie! We love you!
Spencer had his classmates to make Nicholas' cards for his birthday! I thought that was so sweet of him! He is a sweetheart too!
Nicholas was feeling some better yesterday evening. He seemed to concentrate more on his math! We are noticing that his concentration is wanning and he is having a hard time remembering some simple things. He couldn't even take 3 from 8 the other day. He cannot remember some words when he is talking and it takes him a minute to think of what he is trying to say. This was just after a red cell transfusion too, which is very unusual for him. This has been going on for a couple of weeks now. He had a rough morning yesterday mornging and got really upset over his homework. I'll play the "mean mommy" first to see if he can do the work and if he can't, then we will try plan b, whatever that is! He is definitely going through some changes and we will have to find out what is causing it.
Pat, Barb, Brian, thanks for the cards and gifts! Brian, he loved his 10 gold dollars in the little gold pouch! He hid it last night! So cute!
Keep the prayers going for Natalie, Alicia, who is not getting out today, Anthony who is in lots of pain, Tyler, Ismael, Helen, and so many more. Pray for all of us.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, September 9, 2008 11:20 AM CDT
Thanks to Kristin, Kathy, and Nikki for donating in honor of Nicholas' 10th birthday! You all are the greatest! If you have donated yet, I don't know about it and will post when I receive word! Thank you all!! You still can if you haven't yet too! $10 in honor of his 10th birthday! www.fanconi.org, paypal to info@fanconi.org, or mail checks made payable to FARF to me and I'll pass it on!
We celebrated with an army theme for his birthday party on Sunday and they had a wonderful time! Look at the photos at the top, they reveal the fun! The cake was awesome, thanks to Becky! She did a wonderful job and it was all made from scratch! Yummy! Nicholas was real tired afterwards and just crashed! Even yesterday, he just looked tired.
I have put off updating because of dealing with all the questions he has been asking and I just needed time to digest them! He saw blood in his PICC line and the questions just flowed....Where does blood come from? What makes blood? Do I have any bone marrow? Is it working? What will happen when it quits working? Will I have to go more often for transfusions? Will I need bone marrow in Heaven? Will I need a brain in Heaven? Why won't God tell me when I'm going to die? Why won't God let me see angels? And it was about this time that Spencer choked up and said he didn't want to hear anymore while cramming the pillow and blanket in his ears! All those questions at one time. We answered them to the best of our ability and tried to keep it light hearted but he wanted real answers. After he setted down, I went and hugged Spencer and told him we could talk about Heaven any time he had any questions......He said, "Never! I don't want to talk about it!" I told him it made me sad too and he immediately asked, "What?" I told him that when Nicholas talked about Heaven that it made me sad too. I not only have to worry about Nicholas but I worry about Spencer, probably more so! I was telling his nurse, Ms Billie and she said he had been asking her every day or so the same thing..."Why won't God let me know when I'm going to die?" First I heard about it! He is trying to protect Momma! It takes every fiber of my being not to cry in front of him and I have succeeded so far but I guess he just knows too much! And I'm drained.......it is no wonder my continual prayer is for strength and courage.
Please pray for all the children in bmt, treatments, or transfusions. They all need our prayer........Alicia may get to RMDH tomorrow! PTL! Please pray for Papaw, he does have prostate cancer but they aren't going to treat at the moment! Please pray for him and Mamaw too.
Remember the family of Emma Browning, she passed away yesterday.
Miracles, Blessings and Bear Hugs,
Donna
Thursday, September 4, 2008 8:52 AM CDT
Friday, the 5th!
Nicholas did have to have platelets and red cells both today! His plts were 4k, hemoglobin was 7.3, and anc is 2350! He didn't even look like he needed red cells but at least he will be tanked up for his birthday party! Keep praying! He has had one hive and that's all so far!
Again, Please don't forget to send in donation in honor of his birthday! Thanks Kristin! You made me cry!
******
Hello,
I have had a very special thought! I would love for you to do this in honor of Nicholas' 10th birthday. Please donate $10 to FARF or any multiple of 10 would be cool too!
He turns 10 on the 10th of September! $10/10 yo/10th! www.fanconi.org and click on the donate button for info. or
PayPal to info@fanconi.org or to me @ dboggs4newlife@yahoo.com
Please put Nicholas or Boggs in the memo area....or send it to me and I'll send it in.
Will you do this?
Thanks from the depths of our hearts!
Please pray for all the ones in-patient that are in need of miracles......
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, September 3, 2008 7:56 AM CDT
Hello,
Nicholas is doing much better overall. He is still complaining with his trach hurting! Its off and on sort of situation. He will cough and say "Ouch!" I'll ask and he says its hurting. He said his throat was sore and I gave him some tylenol, then there weren't any complaints for a day or two, and then the process will repeat itself. I'll have to ask the Dr to check it this week as they ask him last week and he said it wasn't hurting, therefore they didn't check! I wasn't in the room when they were in there! I will definitely tell them this has been going on for a couple of weeks! He also has a mouth sore right now. He is brusing as usual but is doing pretty good. He doesn't worry too much about the mickey button but its still there of course and we check it to ease his mind.
He is getting so excited about his birthday party! He continues to want to decorate and I told him he had to wait until the weekend! He wants an ARMY theme and picked out camouflage! He wants helicopters and submarines! Real ones! HA! Party will be at our home, Sunday at 3:00 for cake and ice cream! He loves getting mail if you can't come, please send him a card. He will be 10 years old! Wow! I cannot believe we have made it to 10! God is so good to us and has blessed us beyond measure. Can you count all the smiles, hugs, and kisses we've received in 10 years? Spencer is helping me plan this party and has come up with some good games! He is so creative! He is beside himself with excitement! He wants to decorate too!
He just called me to tell me that he scared Ms Billie out of her hide!!!! HA! He hid behind the bed and she couldn't find him! Too funny! He loves to scare everyone! He is a little imp!
Please pray for Alicia, she is running a high temp right now on her 76th day in the hospital for her new marrow for FA! Bless her little heart! Remember all the ones in the hospital and in need of transfusions, treatments, and transplants! Please remember Papaw as he goes for more testing.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, August 27, 2008 6:58 AM CDT
Hello,
Guess who is back??? Yes, Mr Sassy Britches himself! OH YEAH, OH YEAH! PTL!!! I'm one happy Momma! He was happy, smiling, laughing, doing Linda's favorite war whoop, and being his sweet little self. We aren't totally back but we are well on our way! He still fiddles with it, but isn't nowhere near as panicky with it! He will ask us to still check it but not as often! I can tell a huge difference in him. He was actually playing yesterday evening!
I took out his hearing aide and said, "Nicholas! You couldn't be hearing out of this, its full of ear wax!" Mr Sassy Britches said, "Well, I beg your most honorable pardon but I could!" HAHAHAHAHA! Too funny! I love it! Any sassiness is better than the dumps!
I'm just so relieved! Thanks for the prayers! God is so good! Now, I can get a deep breath! Are you dancing with me?
Spencer is getting a cold and wasn't feeling the best yesterday evening! Please pray for him too.
Pray for all the children in bmt or getting ready for bmt, Dianna, Vincent, BJ, Dylan, just too many! Alicia, Ishmael, Helen, Samantha, Tyler, and so many that I don't know about! This is just with FA! Now, there are over 400 bear cubs under 13 with various diseases.......think about that and please pray for all of them! So many families need so many miracles,
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, August 26, 2008 7:21 AM CDT
Hello,
I can tell that Mr Boggs is just a little bit better. He smiled a little more yesterday evening! He is still drooping around though and that worries me. Even during school, he would put his head down on his desk. There is just a tiredness about him. He told Ms Billie that he just couldn't do his homework. He was just too tired. He will come sit down beside me and lay against me like he is too tired to even sit up. This just isn't Nic! Its like he has lost his fight and has no energy to even try to fight. I'm just heart broken and worried that he is getting sick. I keep checking his temp and asking him if he is ok. He will walk around talking to himself and I can hear him praying and giving himself pep talks about his mickey button!
I went through a bunch of questions and used the smiley frowny face scale from 0 to 10 and finally got some answers. He is not having any pain with his g-tube, just anxiety over having to have it changed again! He is afraid that he will have to go back again really soon to have it changed. I then suspected that something may be wrong with it but maybe I'm wrong and he just doesn't want to go back in the near future. He said it just feels differently and is uncomfortable. I think he just has to get use to the tight fitting one vs the old floppy one! I would have thought that he would have panicked over the floppy one not the tight one! We talked and I told him that if he continues to be panicky over it that we would definitely go back to Cincy and have them replace it! I think that did the trick! He definitely doesn't want to go back! He absolutely breaks my heart when he looks and acts so scared. I told him every time he felt anxious about it to say....."Jesus, this is Nic, please help me with my mic.... and with my Picc!" which made him smile! He decided that he would just go to sleep and that way he wouldn't worry about it and that is just what he did and he slept well!
Spencer seems to be doing good this year! Yesterday, he divided up his sheet of paper into 4 parts to show the life cycle of the butterfly and the teacher showed the entire class! I think he felt really special!!! He seems to like it though. That is a blesing!
Continue to pray for all the children in bmt, treatments, and transfusions. Pray for all of us as well.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, August 25, 2008 7:29 AM CDT
Hello,
We enjoyed the Strouth Lane Reunion this weekend with lots of food, friends, and fellowship! It was wonderful to be together, to see each other once again, and are so blessed! The picnic was fun and the children have grown so much! It was on the hot side but lots of breezes and Nicholas enjoyed it! Evan was his buddy and was so helpful with him. Spencer had lots of others to play with and you could them all over the place! It was fun just to listen to them! Wish I had their energy! Nicholas enjoyed it but his energy level has diminished terribly. I can tell such a difference in him.
He has worried over that mic-key button to the extreme and if he gets tired, it has to be checked every 5 minutes! I took out the water in it last night and put back what it is suppose to have and that eased his mind some. Please pray that he will accept this new change and have some fun! He has totally drained me...but I continue to just check it to ease his mind and help him through this fear. It possesses every second of his day and he is constantly checking it. He even wanted me to check it this morning at 5 am!!!! He is now mad because we waited so long to have it changed! I think he is afraid he will have to go back to have it changed again. I tried to get his mind off of it with Alessandra but that only caused him to pout because "She didn't pay much attention to me this year!"
He is just not feeling well. He slept until 10 am yesterday and I was hoping that he would feel better but he still drooped around. Dad was acting crazy and had him laughing the other night! That was the most I've seen him laugh in forever! Yes, Dad was tired and worried about Nicholas and tried to cheer him up!
I wish I knew what is brewing in his little system! His white count is on the high side for him! He definitely has me worried. I'm just waiting for the fever to hit or some indicator to what is wrong. Please pray that he doesn't get any worse, that it is just a virus that will pass quickly! His teacher left him a math test but he just couldn't remember how to do fractions at all and just couldn't concentrate on it at all. He did everything he could do with a calculator and he did fine with that part. He is going to have a rough year. I can tell.
His birthday is September 10th. He was wanting Batman again but I think he finally decided on an ARMY cake!! He keeps saying he wants a submarine and now has added a helicopter to it! He wants REAL ones! HA!
Please pray for all the children in bmt, treatments, or transfusions. Alicia is some better! Anthony is suffering from the effects of chemo, please remember him. So many are headed to bmt with their counts failing, please remember them, Diane, BJ, and Jordan.
Miracles, Blessngs, and Bear Hugs,
Donna
Friday, August 22, 2008 12:50 AM CDT
Hello,
Nicholas' counts were: Platelets-5k, Hemoglobin-7.5, and ANC was 3416! His white count is higher than normal! I do believe he is fighting something! He has had his platelet tx and now getting his red cells. He is still scared about his G-J Tube but has settled a little bit. After about 15 times praying with him and checking it, he finally eased up some. He began this morning again but no where near yesterday! He is very nauseated and running a slight temp today. I'm on edge of course.
Spencer had a good day yesterday as far as I can tell! He survived the first day! He seemed to enjoy it though! He told Ms Becky that he was a little nervous yesterday morning! Bless his heart! He is rotten and growing up so fast!
Continue praying for all the ones in bmt, transfusions, and treatments. Pray for a miracle for us.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, August 21, 2008 7:04 AM CDT
Hello,
Nicholas is petrified about his new Mic-key button. He is getting so upset about it to the point that he just droops around. It is just fitting tighter like it is suppose to! He thinks it is getting loose because I'm sure it is moving around when he sits down and then stands up! It isn't hurting him at all...just feels different! There was some blood around it this morning, which is typical with low platelets, and he called so upset. He keeps asking me "When will I get use to it?" He didn't do any of this at camp and that doesn't make sense to me! He definitely needs red cells to make him feel better. He seems to be really tired. The only thing that perked him up yesterday evening was finding Black Girl's kittens! YES! We have more kittens. He was thrilled that she had two black ones and three gray ones! I let him climb up in the loft on top of the hay to see them. Spencer lifted one out of the little hole they were in for him to see! I should have know better! The hay actually bruised his little legs! His platelets are low I'm sure!
He was mad last night and for the first time he expressed his hate for FA because he doesn't grow like Spencer. He said, "I hate that I have FA! I wished that I was like before when I didn't have to go to the hospital all the time!" He broke my heart! He has drained me mentally! I have went to bed totally exhausted the last two nights. It takes a ton of patience to keep reassuring him constantly. Then, he will keep asking, "Do you think I'm a big baby?" with a little puckered up face that just melts your heart. I'm just praying that the miracle of the blood transfusion will cure all his little fears. It is amazing what blood does! It affects his thinking, memory, moods, and his energy of course!
Today is the first day of school! Spencer wore his Cub Scout t-shirt like his leader wanted! I'm surprised I even remembered it! HA! He is in Ms Mann's room and she was Nicholas' teacher. She understands our situation and I'm sure that will help us this year. Nicholas made Ms Trish some welcome posters that she is just going to love! He will have school today too! I cannot believe that summer is over already and school is back in session! What on earth did we do? Where is our vacation? I think I'm Rip Van Winkle! I get ready for summer and its already overwith! We haven't had any fun this year at all except for Camp Sunshine! It's just hard to plan anything with everyone's schedule. No beach! No go-carts! No Dollywood! No boating! No fishing! No get-a-ways! We must be really tired! We did get to camp out overnight! Maybe we can still do something before cold weather sets in!
I have to plan a 10th birthday too!!!! I have 17 days left to get it all together! We have memorials for the next 3-4 weekends and that will be some fun. Good food, good family time, and lots of fun in the sun! I will probably have Nicholas' birthday on Sept. 7th, the Sunday of Davis Memorial. I cannot belive my baby is 10 years old! Time is flying! I know beyond a shadow of a doubt that God granted us more time with him and he has been such a blessing! God is good! God is awesome!
Please pray for Alicia, she is improving; Tyler, beginning his bmt at Cincy, Isamel, Helen, Samantha, Anthony, all with FA and in bmt too. So many need prayer, please don't forget to pray for them and for us.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, August 19, 2008 12:02 AM CDT
Hello,
Notice the new slide show above? The beginning shows the engagement! If you have any photos that you could send to me, please do so or send me the link! I'll add them to this slideshow! Thanks Jo...I got some of yours!
Nicholas actually held Jack last night! Shocked all of us! He said, "Jack is the most precious baby that I could ever hold!" I think Spencer kept him occupied yesterday until he cried last night! Spencer is so tender hearted and just couldn't stand it! Jack is such a doll! He is crawling around, pulling up, and all those cute things that a baby this age does! He gave me sugars last night! So precious and just a little angel! Maybe they will just give him to me! That would be fine until he cries then I don't know what I'd do! HA!
Nicholas has been complaining with a pain in his side! Not me! LOL! I'm just wondering what on earth it is! Here we go again! See why you need to keep praying for us!!? I really pray for strength and courage almost continually!
Continue praying for all the children in bmt, treatments, or transfusions!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, August 18, 2008 10:59 AM CDT
Hello,
We survived Camp Sunshine! Nicholas was so glad to get home that he kissed the house!!!!! He said, "Mom, I'm not going anywhere for a week!!!" I told him he had to get transfused on Fri so he would have to get out! We were all glad to get home and I guess we are missing camp already though. It seems like a long time since we were there but it hasn't been a week yet! HA!
We stopped by Cincy on the way back home and Nicholas' platelets were downn to 2k, Hgb was 8.5, and ANC was 2350. He was tx with platelets but the red cells just wouldn't flow in! They were too thick as they had been washed too but I guess it just wasn't meant for him to get them. He itched and itched afterwards and I told Dad that I was sort of glad he didn't get them. He actually broke out with a hive last night! We did get to have a little fun while in Cincy and took them to the Childrens Museum which they enjoyed tremendously!
Camp was good. No good news as far as helping Nicholas but overall it was good. We had more time to visit with other families. There were several new families, including the Cox family from Bristol! I'm so glad they attended! They really enjoyed it! According to John Hanna, there were 18 adults there with FA! That is amazing! That is definitely a miracle! There were several families there that were post-transplant as well! It is a wonderful mix. Some familes have had FA for 10 years and it was their first camp! Camp is the ONLY place in the world that people totally understand what you are going through. The volunteers are absolutely wonderful! Thanks to all that made our stay wonderful. Casey, Carly, Jillian, Mike, Paula, Casey No. 2, Joel, Andrew, Linda, Kathy, Carol, Erica, awwww, too many to name here...... thanks to a wonderful group! We love all the volunteers!
Spencer has just blossomed! He was so sweet with all the others with FA! I noticed him talking and playing with so many! And he is hugging more and approaching others more, just reaching out to others as well as getting hugs in return. I could see a huge difference in him this year. He played with Jon Thomas until Jon Thomas could tell a tale bigger than he! It was hilarious! I loved it though!
Nicholas was a little bummed that Alessandra paid more attention to others(and I definitely will not tell him who or that someone else kissed her and she him!) and I think it dampened his spirits some but that didn't stop him from flirting with Sweet Pea Paula! and hugging Erica! I think he had fun overall though! He played and played with Keith, Krisstina's hubby! He loved outside! It rained on us several days and some days were too cool for him to get out so when it was the least bit warm, he would lead Keith to the playground! Too funny!
We did get to meet Jack and Whitney yesterday! Whitney is beautiful and Jack is just a doll! Oh! I could just squeeze him to pieces! Nicholas actually let me hold him and didn't fuss too much! Spencer wrapped himself around my neck but played with him too! I know he is Mamaw Sissy Bear's grandson, but we were still fighting over him! HA! He is so sweet and reminds me so much of Mike! Spencer was up at 6 am to go and help her with him this morning! He was so excited! Too funny!
I'm still extremely tired but there isn't any relief in site! School starts this week and it will be back to the grindstone way too early for me!
Please remember all the ones in bmt, Natalie received her 4th bmt, Anthony now has leukemia and is on his 3rd one, we did meet them in Cincy, Alicia has a rash all over her little body and her central line was infected and they pulled it, Nick is now home and walking, and there were several more in transplant that do not have a website. They all need our prayers.
Blessins and Bear Hugs,
Donna
Monday, August 11, 2008 12:30 AM CDT
Hello,
Nicholas and Spencer are doing wonderful! They are having a ball! Nicholas was dressed as Dracula and Spencer said he was going as himself, a farmer! I couldn't help but laugh! Too funny. He added an Iguana to a straw hat and that was his costume! He and Jon Thomas have played and played! He is making lots of friends and still enjoying the ususals! Joel, Andrew, Kathy, awwww too many to name, the volunteers are just wonderful! They are such a blessing! Words cannot convey our heartfelt thanks for all they do! The "chosen one" for the day packs the milk pack around for Nicholas and he has had a ball! He has nicknamed one of the chosen ones; Paula, Sweet Pea! So sweet!
We have a large total of families here with 5 new ones! Its awesome to see everyone and meet them face to face. This is the only place in the world that everyone totally understands a FAmily!
We are still waiting for miracles....we need so many miracles. Please pray for all the children and their families.....the ones in the hospital too.
Miracles, Blessings, and Bear Hugs,
Donna
Saturday, August 9, 2008 9:41 AM CDT
Hello,
We had a bit of a scare while we were in Cincy! His picc line stopped up and wouldn't flush. He was petrified! My heart dropped into my feet! A nurse from the picc line team came up and put TPA in it and it unclotted in a few seconds! I was so relieved! Nicholas hugged and hugged her he was so thankful!
We arrived in Camp and within a few hours he met Alessandra and gave her a ruby surrounded by diamonds ring and is now officially engaged! He said, "Now, my job is finished!" He is hilarious! He is still on antibiotics and doing fine. He has been so excited that he just cannot go to sleep and was up early this morning!
I just finished a heavy session on Head and Neck cancer! Needless to say, I'm fine! :)
Everyone is missing Sissy Bear but enjoying her fudge she sent! Nicholas is missing "Baby Black Girl!" He has mentioned her a couple of times already! Spencer is playing really well and enjoying this year very much! Dad is helping out with Nicholas' needs. They had a bonfire last night but it has been rainy and too cool for him to stay out long. He is a little droopy but we are still on antibiotics for the duration! He is enjoying himself to the fullest!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, August 4, 2008 8:23 AM CDT
Hello,
We came home Sat! He seems much better today! He just called and was whooping and hollering! He said, "MOM! I broke it loose! I can sneeze!" "Whoooo Hoooo!" He is so happy! I'm so happy! Thank the Lord! Praise the Lord! That is an answered prayer.
Dr K thinks its due to aspiration and not viral! That means he isn't contagious! He hasn't had a fever at all during this ordeal. Thank the Lord! I could tell yesterday that the pain was subsiding and he was feeling much better.
Keep praying! Pray for all the ones in bmt, treatments, and transfusions!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, August 1, 2008 7:36 PM CDT
Hello,
Nicholas' 2nd x-ray shows pneumonia! Yes we are inpatient for tonight. He did get his platelets and red cells with hives. His blood pressure shot up, heart rate increased, and he was extrememly nauseated! Dr K decided to keep him tonight and give him antibiotics. He is on Cefepime, Zyvox, and Vanc. He will only get the vanc while he is here and we will do the rest at home. He just couldn't hide his pain this morning and just cried and cried. He knew he had it and just wanted to hurry up and get here this morning. Broke my heart but after we arrived here, he knew he was safe I guess and was ok for the rest of the day. They have cultured everything! Now we wait. One good thing, he doesn't have a fever at all! That is a miracle in itself. Dr K feels we have caught it early.
Keep praying for him and for all the ones in bmts, treatments, and transfusions.
Major miracles, blessings, and bear hugs,
Donna
Thursday, July 31, 2008 1:57 PM CDT
Hello,
Nicholas was really perky yesterday evening. He still is hurting some in his lung but I can tell he is feeling better! He is in good spirits but very pale. He has been lazy today I think! He has bruises galore of course! He and Spencer were playing and I heard an "OW!" They had bumped and Nicholas ended up with a bruise! Its so hard to get it in Spencer's head to "play easy!" I tell him if its lighter than a feather then it can touch Nicholas! LOL! I'm sure that will work!
We will go tomorrow for transfusions and I'm sure he will get red cells too. I'll try to update if I can. We do have a new nurse now and tomorrow will be her first tx trip! She has been training and I didn't tell Nicholas! He told me the first day she trained, "Mom, I'm a little mad at you for not telling me she was coming!" Little booger! I just didn't want to get my hopes up I guess! He just didn't stick around long enough to listen to me!!
Please remember all the children going for multiple bmts, David no 2, Anthony no 3, Natalie no 4, goodness what is going on! Rem. Alicia, BJ, Sarah, Will, Dylan, Jo, Jacy, and of course Nicholas all facing bmts or med issues.
Still praying for miracles, blessings, and bear hugs,
Donna
Wednesday, July 30, 2008 6:55 AM CDT
Hello,
Nicholas is still having a "catch" in his left lung without any other symptoms but I do believe it is breaking up and coming out! We have increased breathing treatments during the day and I'm patting his back trying to get it out of there! He called the other day, sounded so low and down and asked me if he would get to go to camp. I told him the day we leave the house we are heading toward camp! That really perked him up! He was so happy and I could see him beaming on the phone! HA! He dreads the pit stop in Cincy but knows he has too! Last night, he said, "I can't waith to get this(G-J Tube) fixed! Then, I won't have to worry anymore about it!" That's my baby! He is trying to be so brave.
He began coughing up a bloody tinge yesterday. This morning there is a bit more. I know his platelets are dropping and we may have to go in early this week! Bless his heart! I've prayed for God's will about our trip. If its not meant for us to go, then we won't! Dad told Nicholas last night we would do everything in our power to get him better so we can go!
Suitcases are out and getting packed! Spencer had to help me last night! Yes, I have to start early so I will remember everything! We have to pack the entire house! HA! Some things just cannot be packed until the last minute and that's always so stressful! I don't know how many times we have forgotten something! Tubing, a couple of times and had to get some at the hospital! Yes, even with a list we still forget! We've even left and had to go back but usually we aren't too far away! Dad and I have to ask each other ....Did you get this or that? and we go down the list! Spencer wrote a note to get "Sunscreen for camp!" because he and Casey are going out on a boat! Spencer wanted to know if he could go to camp even if Nicholas didn't get to go! Tooooo funny!
I let it slip that Julia would be there this year and Nicholas was elated! He wanted to know if her sister Mary was going to be there as well! HA! He thought they were sisters! He remembered them from a couple of years ago or more for they weren't there last year! He wanted to know if Megan was going to be there! He prayed for Megan when he heard that NH was hit with a storm! He cannot wait to see Joel and Andrew as well! He has his crazy hats ready!
Praising the Lord that Alicia is out of ICU with a good MRI report! Pray for them and all the others in bmt, treatments, or transfusions. Pray for us. I don't think I've ever been this tired in all my life.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, July 28, 2008 9:46 AM CDT
Hello,
Nicholas received platelets on Fri and had one hive. His platelets were down to 5k, Hgb was 8.3, and ANC was over 2000. He was hurting in his right lung and they did x-rays which were clear. He has complained all weekend. He cannot yawn or sneeze without catching his side and saying, "Ow!" It's when he takes a really deep breath that it hurts. He hasn't had any fevers and oxygen saturations are fine. I don't know what else it could be unless it isn't in his lung. He wants to get over it so he can go to camp! Whatever "it" is!
We had a wonderful day celebrating Mamaw and Papaw's 60th wedding anniversary! It is definitely a milestone! I couldn't find hardly any decorations with 60th on it! Not many reach their 60th! What a blessing! What a miracle! I do have some photos!
Please remember all the children that are in need of miracles today. Alicia, seisures and gvhd, Natalie going for her 4th bmt!, Nick, bmt and battling infections, David, going for his 2nd bmt!, Charisse, getting over cancer surgery, over 400 in the prayer bears of children! not including teenagers and adults! Please pray for us.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, July 24, 2008 1:28 PM CDT
Hello,
I thought I'd better update! We go for platelets tomorrow and I'm sure they will be low. I can tell when he drops by his coloring. Besides the bruising, I'm picking up on other signs that are obvious to me and I cannot ignore them. Its just a change in color that only I could pick up on, I suppose.
Nicholas is doing fine this week, just being anxious about his g-j tube change. Last night, he said, "Mom, I know you want me NOT to be nervous but I just can't help it! I know! I'll just ask Jesus to help!" I told him that I have already be praying for him and we did again. Awww, the faith of a child. He is trying so hard to be brave! He hasn't mentioned it today. He has called me a couple of times and he had already wished Mamaw and Papaw "Happy 60th Anniversary" today! He beat me of course! Yesterday, I think he called everyone he knew! So precious! If you had a message on your answering machine, it was Nicholas! HA!
Spencer is doing ok! He was so tired last night, he fell asleep by 8!!! And he slept all the way through, about 10 hours straight! I just hope and pray he isn't getting sick! He is growing straight up and thinning down even more! I told him if he didn't gain some weight, I was going to take him to dr for vitamen shots! He immediately said, "I'll take vitamins Mom!" I cannot get him to take any type of vitamin! He is very strong willed! Hope it helps in later in life! I guess I survived! HA! Now the truth is out!
Please remember all the children struggling in the hospital or in bmt, treatments, or transfusions. I know its hard to get through the tunnel but there is light at the end. Hang in there and keep the faith. God is still on the throne! He is ALIVE! and WELL! and KNOWS our struggles. He is carrying us!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, July 22, 2008 10:21 AM CDT
Yes, he wanted a buzz cut! He has 1/8 of an inch all over! We keep rubbing it! One little boy yesterday called him baldy and broke his heart! I told him that he was just jealous because he was cooler! That made him smile! Nicholas wanted one after he saw Spencers! No, he didn't get his cut that short!
Nicholas has been feeling really well. He has been rotten! I love rotten! He is not looking forward to getting his G-J tube changed! He is dreading it really bad! He told us last night, "I don't know why I'm worried! Just look at how many I've had!", throwing his hands up in the air! He is too cute! He is brave one minute and asking "how many more weeks?" the next! We are trying to get everything scheduled on our way up to camp sunshine! He said, "I'm really excited about Camp but not about Cincy!" Last night he said, "Dad, every time I hear you all mention Cincinnati, I feel nervous inside." God love his little heart! That is why we try not to mention it in front of him! He knows he has to have it though. Spencer was just about in tears and told him he didn't have to have it done because he didn't want him nervous and worried about it! Nicholas quickly informed him that he knew he was getting it done and that was final!
They have been practicing their skit they are planning on doing at camp! It is cute! I'm really dreading this trip. Praying it will not be a repeat of last year! I wish there were lots of time to have fun along the way instead of always being so rushed. Do wishes ever come true? Maybe if we get to Maine we can do some site seeing! That would be cool!
We will be getting transfused on Fri so remember that! Pray for Alicia as she has been dx with GVHD! Pray for Teresa as she delivers a baby girl! Pray for all the ones headed for bmt, or get treatments, transfusions, or in the hospital! Pray for us too.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, July 18, 2008 12:36 AM CDT
Hello,
Nicholas has had his platelet transfusion without hives! Whoo hooo! His platelets were 2k, Hgb 7, and ANC is 1833.
Yes, that is the lowest his platelets have ever been. He has petechia all over his face and bruises galore though! I ask the NP if the nausea was triggered by low HGB and she said it could possibly be. Nicholas has a mouth sore that is very bloody. I think he bit the inside of his mouth and with low platelets it is bleeding. He was nervous about the dr looking at it and will not eat anything at all! Nicholas told me that if he could stop picking at it with his tongue it would get better in about a week!
The red cells are going in now and he will be singing again before too long! :) Pray for no reactions.
Pray for all the children in bmt, treatments, or transfusions.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, July 17, 2008 12:58 AM CDT
Hello,
I have a new video to post of Nicholas singing, "Diggin' Life!" I do believe we will have to change our motto to Nicholas is Diggin' Life! This was a song from VBS! I didn't even know that he knew it! He sang and I asked him to sing it again and captured it on video! I love it! I can't help but laugh every time I listen to it!
He is fine today...no nausea! Whooo hooo! He asked for a rolaid last night and I began thinking that he hadn't had any in the last couple of nights! Maybe they do make a difference for him!
We got Spencer a baseball and glove which put him in seventh heaven! Guess what we have been doing ever since! Yes! Yesterday evening Nicholas was laughing at me and said, "Mom! I've never seen you run that fast before!" HA!
Happy Birthday tomorrow Ms Lena! I will be with Nicholas in transfusion so we hope your day will be wonderful!
Miracles, Blessings, and Bear Hugs,
Donna
P.S.
Mark your calendars!!!
We are having Mamaw and Papaw's 60th Anniversary Drop By Celebration on Sunday, July 27th at their home from 2 til 5! Please stop by and let them know you are thinking of them. Your presence is all that is needed, no gifts please. Sunday after next!!!!! We are so blessed to have them in our lives! If you are in the area, please stop by! If you would like to send them a card, please send them to me: 11824 Lyons Fork Road, Coeburn, VA 24230
Thank you so much! I was expecting Nicholas at their 50th! Time is flying!
Wednesday, July 16, 2008 12:09 AM CDT
Hello,
Prompted by Kathy to update.....here we go! Nicholas called me the first thing this morning. He was nauseated and he was eating a cup cake and it was making him feel better! He said, "Mom, I'm calling it my miracle cup cake!" He and Ms Billie made cup cakes yesterday with rainbow icing! I'm sure he had a ball with all the different colors and decorations! He made Spencers with blue icing and yellow sugar decor, mine with yellow icing and orange sugar decor because "You are like sunshine Mom!" Awwwww, how precious! He made one for Sissy and Daddy Bear, Carolyn and Royce(come and get it!!!!), Mamaw, and Papaw! He made Dad a rainbow iced cake pie! HA! I'll upload photos! Photos are loaded.....see above! Just in case you missed it!
We will be getting transfusions on Fri! In my opinion, Nicholas will be getting both platelets and red cells. He looks pale and lips hardly have any color in them. He is irritable at times! This irritability is the hardest for me to see.....I just hate it! It just could mean so many different things.....but seems to be linked to low hemoglobin. Low Hemoglobin means less red cells in his system and that could contribute to less oxygen in his brain and lungs, making him short of breath, heart has to work harder to pump the small amount of blood, and so on! And that is why he is droopy too! I know he cannot help it. And now the nausea is returning...when he needs red cells? That is the pattern I'm seeing......what it has to do with the tummy, well, I don't know! I know it could be reflux, virus, but every time? I don't think so. Yes, he is one little complex imp!
Continue praying for Alicia as she battles for her life, Justin, Makayla, Jo, Jacy, Sarah, Will, Nick, and for my baby. Pray for Marsha's mom, she may have leukemia. Pray for all the children having bmt, treatments, and transfusions.
Miracle Cup Cakes, Blessings, and Bear Hugs,
Donna
Tuesday, July 15, 2008 11:56 AM CDT
Hello,
We may have enjoyed camp but can we really have some fun without consequences? NO! Nicholas is coughing up more thick junk than he should be and drooping around. I was putting away some clothes and went in the living room and he was bawling! I couldn't believe my eyes. He said, "I'll have to tell you the truth!" Sob! Sob! I kept asking him questions and all he would do was shake his head. Then, he pointed to his mickey button! I was so scared that I was weak! I was so relieved that the button was his problem! I checked it again and it was ok. He was satisfied that it was ok and stopped crying! Whew! It is definitely bothering him and I pampered it last night which made him feel better. He said it was stinging. I put extra Vitamen E oil on it! Thought all was well and then he woke up this morning and was really nauseated and threw up! Maybe there is something else going on and is affecting it! Spencer threw up last night so maybe they have caught a little bug! No fevers. Nothing else, just nausea.
Then, the next thing he said was, "Do you think I'm a big baby?" Broke my heart! Of course I told him that he was not a baby that he was our hero! I told him that he was the bravest boy on earth! He said, "Mom, we aren't brave!" I'm just amazed at his perpective! "We", not "I!" He included all the other children going through these medical issues as well! Now on top of this, he has been thinking really deep! He asked me if that huge bruise on his leg would make his platelets fall faster!! Amazing! Last night, he asked, "Are there were sharks in heaven!" I think he knows that he is feeling bad more often because he has been mentioning dying too much! Its always in a joking manner, never seriously serious! Then again, maybe he is just being silly but it strikes fear in my heart!
Please remember us in your prayers. Remember all the children in bmt, treatments, transfusions, and hospital.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, July 14, 2008 7:47 AM CDT
Hello,
Ok, lots happening with a busy filled weekend! First of all, Spencer is feeling much better but I think the antibiotic is upsetting his tummy! He began feeling better after a couple of days on antibiotics, back to himself! We didn't make it back to VBS the rest of the week!
Nicholas did get his platelets without any hives, which is a wonderful day in itself! We stopped by the three story play area at Burger King but it had a karate group of boys and girls in there! I found him curled up on one of the platforms with his arms over his ears!! The noise was too much for him and we didn't get to stay long! He was really bummed about that!
Friday evening, the sleepover at Sissy Bears' lasted for about an hour!!! Nicholas got homesick, and not Spencer!! I just couldn't believe it! That was one time that he shocked me! He kept mentioning....."what if he gets homesick!" but I didn't actually think that he would! I was wrong! He was already hooked up to everything so I just crawled in bed with him! It was the first time I'd spent the night at Sissy Bears! HA!
Saturday, Spencer was up at 6:30 am, ready to go to Black Creek to a camp-out with the Cub Scouts! We went home and helped Dad pack....of course we had to pack the whole house! Nicholas woke up at 7:30 am and was raring to go! He was so excited that he just beamed and eyes sparkled! We arrived at the lake at 10 and helped set up the tents! Nicholas found his buddy Jeremy and he carried Nicholas' feeding bag around and played all day! Nicholas wanted off his feeding more than on of course and it was hard to get in his required! He had a ball and I told him I was definitely a pushover! He had to have some fun! He was so tired a couple of times that Dad had to carry him!! He wanted to take in the camp fire and s'mores too...just pushed himself! At 10:30 pm, I asked him if he was ready for bed and he said, "If you are ready, I'll go!" HA! He slept with his little dirty feet until about 8:30 am and then, he was up and at it again! Jeremy was just the sweetest!!! He would just sit with Nicholas when he was too tired to do anything! He would entertain him with some of the others just to make him laugh! He would catch salamanders and bring to him. He would carry the feeding bag and just cater to Nicholas' needs! You could hear Nicholas hollering for "JEREMY" if he was out of sight for too long! I appreciated it so much! It just amazed me and left me in tears that he spent all of his time for/with Nicholas! He is one super kiddo!
Nicholas fell asleep around 5:00 pm and didn't wake up until 8:00 pm!! He woke up hollering for Billie and was so confused when he saw me! He actually got mad! I explained to him that he had been napping for 3 hrs and it was still Sunday! He couldn't believe that he had slept so long! He was one tired happy little camper!
I asked Spencer how he liked camping! He said in a very puzzled voice, "I didn't even take a bath last night!" I told him that is what you did when you camped out! You don't bathe and you go to bed with dirty feet! He said, "I LOVE camping!" HA! HA! He had to soak his feet and scrub them with a brush! I don't think I've ever seen him that dirty! They had soo much fun fishing, playing and romping around! We will definitely have to camp out again! I was surprised that Spencer said he like camping because within the first part of the day, he got stung by a hornet just under his right eye! It began swelling and I gave him Benedryl. His entire eye and face was swollen. Then, they were fishing and guess what happened! He and another little boy were stung by yellowjackets! He was stung on the right side of his temple within a couple of inches of the other sting! Several were stung that day and three had been given Benedryl! That didn't keep them from playing though! He told everyone that he had been stung by sweat bees 9 times! Overall, it was a wonderful sunny day! Nicholas prayed that it wouldn't rain and it didn't on Saturday at all but did on Sunday morning before the tents were taken down! It was a wonderful camp out!
Pray for all the children in bmt, treatments, or transfusions!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, July 10, 2008 10:43 AM CDT
Hello,
Nicholas' platelet count is 5,000 today, hgb is 8.6, and anc is 1716.... He had red cells last week!!!! He is NOT getting much of a rise in the red cells...his hbg use to go to 10-11! This will mean he has to have red cells next week as well. I know miracles do happen ....I keep waiting on ours. Every day is a miracle and I guess I should be thankful for them and I am....but I'm only human and always keep asking for more!
Spencer ran a temp yesterday evening and threw up the first dose of antibiotic! He kept the next one down and the temp began to fade. He and I took a long nap yesterday evening! This was not a good thing....he couldn't go to sleep last night! It was after mid-night before he finally went to sleep! Needless to say, I'm very sleepy today!
Wanted to give you a quick update ........more next week as I don't have a nurse tomorrow!
Keep the ones in bmt, treatments, or transfusions in your prayers!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, July 9, 2008 9:36 AM CDT
Hello,
Nicholas is still coughing up blood off and on but not a large amount...we will be transfused tomorrow, so pray that the tx goes well. He didn't even go to VBS last night! He said he was too tired to go.
Pray for Spencer, he has strep and will be on antibiotics....Spencer is with me right now and says "Thank you for the prayers!"
Remember all of us and all the children in bmt, transfusions, or treatments.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, July 7, 2008 1:06 PM CDT
Hello,
Nicholas coughed up some blood Sunday morning and seems to be tired but other than that, he is well. He has had a wonderful time playing with Ms Abby this weekend. They all spent the night with Sissy Bear and Nicholas was bummed that he couldn't! I think it ended up really well in the end as she was bragging on a little boy in her school and broke Nicholas' heart! He didn't want to stay then! It was so funny!
He didn't sleep well last night though. He tossed, turned, and was talking in his sleep! He has been hollering for me in his sleep! "Mom!" I will get up to check on him and he is asleep!
As usual, celebrating the 4th of July, we had more food than necessary, and more fun! Tonight another VBS begins and I think I will try to take them! They love seeing all the other children. I will take toothpicks along to prop up my eyelids! I'm just too tired! HA!
Pray for all the children in bmt, transfusion, or treatments! Alicia is doing better! Pray for Natalie, Nick, Justin, Cameron, Jo, Jacy, and the list continues to grow and grow. Rem. us!
Miracles, Blessings, and Bear Hugs,
Donna
Saturday, July 5, 2008 2:09 PM CDT
Hello,
Nicholas ran a temp off and on so they did blood cultures on Thurs! I was afraid they were going to put him in the hospital but they didn't. He did receive platelets AND red cells! His HGB was 6.9, his platelets were 6k, and his ANC was 2378! I think he is definitely fighting something! He was really droopy but after an hour of red cells he perked up and was himself again! Spencer and Sissy Bear went with us and kept us company.
Friday, they couldn't wait to get to Sissy's for a July 4th cook out! There were lots of children to play with and Nicholas wore himself out and crashed on us! I didn't think he was able to go to see the fireworks but he wanted too and really enjoyed them! He said, "Mom, I wished every night was July 4th!!" He pretended to grab the fireworks! Spencer played outside the van with another little boy and fell and skinned his knee. Today, he needed more attention and was limping in front of everyone! Too funny!
Hope everyone enjoyed their 4th!! We have! Please remember all the children in bmt, transfusions, and treatments! Pray for all of us!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, July 2, 2008 11:21 AM CDT
Hello,
The boys were so excited that Ms Abby was visiting but when they called and no one answered...it was major bummer mode! She did visit a little later though. Nicholas complained of a headache several times and had to lie down. He was rather pale but would pop back up and play some more then repeat the process. He even ask for Tylenol. They did get to play and enjoyed pizza together. I picked some raspberries and Abby loved them! Spencer wouldn't even try them. Nicholas did and spit it out while gagging and said, "I'll never like those as long as I live!" He must not have liked the texture because he didn't even chew it! It was funny!
I do believe that Abby got the best of Spencer! She wanted to kiss him and he scrambled up, ran from her and asked her to stop! I couldn't help but laugh! I mean he was a little upset! He was picking on her all evening but didn't want any of those cooties! HA! Dad told him to keep running!
Nicholas thought I had left this morning sneaked back up! I have dubbed him Sneaky Bear today! I explained why he needed to stay on his moisture but he just wanted up! Wanting up is not bad but at 6:30 it is too early! Well, guess what? He didn't go back to sleep but he stayed on his moisture! Ms Billie said he was very tired today. He will get platelets tomorrow and I won't be surprised if his HGB isn't low as well and need red cells. I've noticed that he has complained with headaches when his HGB gets low. He has been having leg/knee cramps after his transfusions. He use to have them just after red cells but now he is getting them after every transfusion. It could also be the GCSF(neupogen) that is causing leg pain but he would have them all the time if it were the neupogen and not just when he is transfused. And the pain is usually gone by the next day or two. I could tell yesterday by just talking to him on the phone that he is breathing a little too fast or just short of breath when he talks and definitely when he was playing last night! Yes, my symptom antenna is always on alert. He even had to rest more after just riding his bike. I really believe he will need red cells tomorrow according to his symptoms. If he does, that would just be 2 weeks between red cells. UGH! I hate FA. I hate bone marrow failure. I hate that FA is robbing my babies life. It has been a horrific nightmare just watching him deteriorate in slow motion. Even though I thank God he is still with us and we are so blessed with his presence, I do not want him to suffer. I wish I could make miracles happen. I'd give them out all day long. Yes I'm selfish. I want my baby to live, pain free, symptom free, and still have him with me, to hug, snuggle, kiss, caress his precious face, smell his essence, laugh with, plan with, play with, to look at, to watch, to read to, to cater to, to hold, and to just be. I'm watching the life ebb out of him and he keeps planning for the future! He told me the other night that he wouldn't always be with us.....because he would have to leave and go to Michigan to get his girlfriend, Alessandra!, and then he would be back! I let him plan and plan and encourage him all I can.
Right now, we are planning a camping trip! His first one! He had to read the list and helps us plan what we will need. He is a good little planner! Spencer had to help write it! He also helps plan what we will need and has really good ideas! They are so precious. I cherish these times. I know how precious they really are. Be sure you take the time for your children and family. Slow down. Hold them, kiss them, be good to them and each other. Life is too short and so precious.
Pray for Natalie, Nick, Justin, Haylee, Will, Jo, Jacy, Alicia, Bryce (Nurse Linda's new grandbaby!), Lindsey,
Amelia, Jessica, Ian, Evan, BJ, ......see, the list will continue and grow bigger......pray for all of us!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, July 1, 2008 11:23 AM CDT
Hello,
Nicholas is doing ok so far! He is a little on the grumpy, irritated side and I think it is due to his Hgb dropping. He is a little pale, has a few bruises on his legs and some petechia on his face. Otherwise, he is still his sweet little loving self and gave me lots of sweet kisses and hugs last night! So precious! Remembering when he was first born and asking God to spare his life, the bleeding stopped and we have been so blessed for the past 10 years with gazillions of blessings.
Another parent asked me how I do it? I just take one day at a time and try to make the most of each day while trusting in God. It doesn't take a big trip to make him happy, just holding him and making time for him is one of our favorites! I'm sure I should do it more often. Take more time for him and Spencer, it may be possible but I don't think my house can take much more neglect! Then again, I'm sure it will still be waiting on me whenever I can catch up. I wish there were more than one of me! Hmmmm, that's an idea! Spencer is Jeff's clone, maybe I could clone myself! HA! NOT! We definitely don't need any more Donnas!
The boys really enjoyed Ms Abigail's visit and Nicholas called me asking if she can come back this evening! I said, "Of course!" which made someone quite happy! He loves company! He will be so impatient until she gets there and will aggravate Ms Billie to pieces! HA! Spencer will be delighted too! He told me last night, "Mom! She kissed me!" I couldn't help but laugh!
Spencer is still going to Camp Bethel but I don't think they are keeping him busy enough. Too much leisure time for him to really enjoy it! It was too cool yesterday to get in the lake and I think that made for a long day! Hopefully, he will get to swim or should I say play in the lake tomorrow. He loves to splash Sabrina!
Pray for Natalie Jane as they decide if she needs a 4th bmt, Sarah, BJ, Alicia, Jacy, Jo, MaKayla, Justin, Nick, and so many more that need our prayers. Pray for us.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 30, 2008 7:49 AM CDT
Hello,
VBS ended on Fri and Nicholas just drooped around and didn't sing. I think part of it was not seeing his favorite gal Breanne and part of it was he just wasn't feeling well! He didn't even stand on stage! Spencer didn't either though! He was his usual little shy self and didn't want to! They really enjoyed it though. There is another one pretty close next week...I may be rested up enough to take them! It is usually real good.
Saturday he was back to his bouncy self. We went to the Trace Fork reunion but "There's no kids here, just grown-ups!" They did have some fun. Nicholas sang to Hassie and Hassie sang to him and it was pretty special! We didn't stay long and hurried back home to enjoy doing nothing! We thought we were going to have some company but they came on Sunday and enjoy a wonderful meal that Dad and Sissy Bear prepared! HA! It was delicious! Dad is a great cook! We have been cooking for Mamaw and Papaw every Sunday! Papaw said it was a good habit to have!!!
Remember all the children in bmt, transfusions, treatments, or getting ready to go to bmt....Natalie getting ready for her 4th bmt!, Justin, Nick, Sarah, Alicia, BJ, Makayla, Will, Charisse, and the list goes on and on. Pray for us.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, June 27, 2008 7:24 AM CDT
Hello,
Nicholas received platelets yesterday with some itching but nothing major! It was a good day! Any day without a major reaction is a great day! Nicholas' plts were 9k, hgb was only 8.5, and anc was 1978 which was good! His Ferritin level came down to 1971 but I don't believe it is correct! Not after just receiving a red cell tx, it would have gone up some....not down!
Nicholas sang a song to his VBS class during the bible lesson! "We've Got The Power!" Listen to the song on the video above...its the same one! His teacher, Jimmy just cried and cried! Nicholas has enjoyed VBS so much and has actually pestered me to death around 4 pm every evening wanting to know "When do we leave for VBS?" Ha! Hopefully, Breanne will show up tonight! The program is tonight, presenting it to the public! I have no idea if Nicholas is going to sing a special song for someone or not! We'll see! As he told someone the other day, "I've got lots of tricks up my sleeve!" Too funny!
Spencer will not participate at all in the singing. Bribing with bubble gum hasn't helped Cathy either! He said, "Mom, I just get so scared!" He loves to sing and I asked him if he would just stand with his group. Let you know later on that one! He had had a ball playing with Kassi and Hannah! If only you knew the anguish and anxiety he went through before it began and then he has loved it! Last night after a storm passed through, there were huge puddles for them to play in and he LOVED it! He was soaked to his bones!
They also threw water balloons last night but you couldn't tell it on the little water dogs! I let Nicholas go home with Daddy Bear before the water balloon fight began! Thank goodness I did! Nicholas threw one at Jeff Dotson before everyone else got them! It didn't burst until it hit the ground! Nicholas headed back for more but I stopped him! I didn't want him wet! He was happy to go home with Daddy Bear though!
Remember Natalie as she heads toward her 4th bmt! Alicia, Jacy, Jo, Will, BJ, Justin, Nick, as they all go through different procedures. Remember the ones getting ready for treatmenst, transfusions, and bmts. Remember a dear friend of our family that is facing cancer.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, June 25, 2008 7:22 AM CDT
Hello,
Nicholas and Spencer are really enjoying VBS! They love it all......especially making s'mores last night! It messed up the schedule and Nicholas didn't like it one bit! So funny! Spencer didn't either! "But I didn't get to make my craft!" Spencer was running and fell last night, scraping his side, leg, and ankle. Ouch! They were playing basketball...and chasing him because he had the ball...running and crocs do not mix! He bumped his head a little bit but I'm sure it was harder than the asphalt!!! It didn't take him long to bounce back though and continue playing!
Nicholas is really bummed that Breanne isn't there......he mopes around and says, "Let's go see that boring Cathy!" HA! I told Cathy what he said and she hooted! She promised him that Breanne would be there before the week is out! He loves on everyone though and is so sweet!
I've been so troubled...please remember us in your prayers...I just continually pray for strength and courage. I don't know what it is but God does.
Pray for all the children as well, Natalie may be going for her 4th bmt, Justin, Alicia, Jacy, Jo, Nick J, BJ and so many more....
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 23, 2008 10:05 AM CDT
Hello,
Saturday, was a company picnic and the boys really enjoyed it! We turned them lose and let them romp and play all they wanted! This is the first time we have done this with Nicholas and he LOVED it! Freedom! By the end of the picnic, he was exhausted and had a headache! I pored the fluids to him as he hadn't had much and then we fished the rest of the evening! At one point, he came back and said, "Mom! I've made lot of friends!" He ended up with a little friend named Grayson and they were just the best of pals by the end of the day! It was just precious! There was a jumping arena, a huge slide, a clown face full of balloons to jump in, and lots of carnival goodies! He and Spencer both played hard! Spencer and I ended up sunburned!
Sunday, I woke up with a severe headache! Probably from being outside and in the sun and not use to it! Eyes are still hurting me today! I slept most of the day yesterday....just exhausted and it caught up with me, I guess!!
Nicholas was worried that I wouldn't be up and ready to go to VBS! The hour finally arrived to leave and he was so excited. He said, "MOM! Today is the best day of my life!" HAHAHAHA! They really enjoyed VBS too! Hopefully, I will survive this week! Nicholas woke up early this morning seeing what time it was and what all he could do before VBS! He is a little worrywart......just like his Mamaw! He will quarrel at her for worrying and he is just as bad! Too funny! Yesterday, I told him to stop worrying about it and he said, "Mom, everybody worries sometimes!"
Yes Nicholas....I worry too but I don't let you know it! His hgb was down to 6.6! Platelets were 3k....too low for me! He will get off schedule the week of the 4th I'm sure. He told Santa that he gets confused when we get off schedule! Broke my heart and just about make Sissy Bear pucker up! Moms and Dads have billions and billions of unshed tears!
Keep praying for us and all the children going through bmt, treatments, and transfusions. Remember Natalie as they will get the news today if she needs a 4th bmt or not! Bless her little heart! Alicia, Andie, McKayla, Justin, Nick, Anthony, ......and on and onnnnnnnnnn the list goes......
Miracles, Blessings, and Bear Hugs,
Donna
Friday, June 20, 2008 3:06 PM CDT
Hello,
Nicholas has done well so far with is transfusions. He is just about finished with the red cells. Platelets went well! He was surprised with a special visitor today. SANTA!!!! He was great! Sissy Bear is with us and said, "Boy, today has gone fast!" I was quick to inform her that it doesn't always go this fast! Santa did help make time go by and I think he was entertained as well! I think Nicholas kept him in stitches! He gave Nicholas a bell and then found a button with a reindeer on it and Nicholas told him he would give that to Spencer!! So sweet! Then, Santa gave him another bell for Spencer! Nicholas did a rainbow with Marinda from child life and he gave that as a gift to Santa! Santa loved it!
Remember the family of Rusty Mabe, as he passed away yesterday! This is my sister-in-law's father. They need extra prayer during this time.
Continue praying for all the children that are here, there seems to be so many today. Pray for the ones in continued treatments, bmts, and transfusions.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, June 19, 2008 8:31 AM CDT
Hello,
I went home yesterday to a very pale little fellow! His lips had no color and he was very tired. He definitely will get red cells tomorrow as well as platelets. It will be 8 days and I really dread waiting til tomorrow. I'm thankful that he is as well as he is!
He passed all his SOLs! We will need to have a sol party! He was so happy and whooped and hollered! He stood up and jumped up and down! He is rotten! He was thrilled. We are so proud of him! He did fantastic with all that he goes through.
Last night he was talking about the house he would have one of these days! Ten times bigger than ours with bathroom for every bedroom, a pool, and everything! I asked him how on earth would he pay for it? He then said all he worries about is playing and eating! I told him he wouldn't get paid to play! This brought on all the things he really wants to do......fly a helicopter!, operate a submarine, fly an airplane, and shoot weapons! I told him he definitely needed to be in the Navy! He then wanted to know if they trained and worked out! I told him yes! He flexed his muscles and said, "You have to be tough to be in the navy, don't you mom!" Then he wanted to know what they ate! I told him 3 square meals a day! Like what? I said, "Square cakes, square sandwiches, square cheese,......" He cracked up at me! He then helped me by saying square peas....etc! He thought that was hilarious! I had to laugh to keep from crying! Bless his little heart! He plans all the time! His wife.....how many children he wants to have.....what he will teach them.......so heart breaking but so precious at the same time. Dream on baby......a guy has to dream! Spencer will do the same thing and he always says he will live beside of us and help take care of his brother. He is so precious!
Keep all the children in your prayers....too many facing mountains bigger than they are but trudge on daily not letting the sicknesses get the better of them! They are truly the heros!
Miracles, Blessings, and Bear Hugs,
Donna
P.S. We are getting a program up and running for the children at JCMC and trying to raise money to fund it. If you or one of your groups would like to do a fundraiser, please consider us....
Bears Battle Beads Please sign up to receive updates to the site too! Thanks!
If you want to donate, we would greatly appreciate it. This program is so wonderful for the children! I'll post some photos when I get time!
Wednesday, June 18, 2008 10:06 AM CDT
Hello,
Another day at the Boggz Bearzz was good, with sweetness and a little grumpiness thrown in! Not a bad day at all! Normal! Nicholas did have a couple of accidents on his bike! He put on the brakes and ended up on his behind...just fell off! Not once but twice! Whew! Nothing obviously injured! Yes, I made him stop riding it! Goodness, he is down to just a few things he can do anyway, let along take away the one thing he loves to do!
Nicholas was the first to wish us a Happy Anniversary! Yes, today we celebrate our 26th one! Wow! I told you time was flying by! Tomorrow is his nurse Billie's birthday and I baked brownies and set out some party things for them to use today! I had to tape some birthday banner on the door for her! Nicholas was so excited he couldn't go to sleep! He is going to decorate a piece of the brownie with sprinkles for her today! Then, I guess we will decorate one for me and Dad! HA!
Spencer had a good day yesterday but was tired last night! His appetite is definitely increasing and he is getting muscles in his legs! I think he is playing hard! Today, they will get to play in the lake! I remember playing in the lake at my cousin's house and was telling him all about it! We practically lived in them all summer long! It was so much fun and brings back so many precious memories. I don't think we could ever forget those times! Awwww, the good times!
Please continue praying for all the families going through transplants, treatments, and transfusions. Alicia, Justin, Andie, Natalie, and the ones that need bmts!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, June 17, 2008 11:12 AM CDT
Hello,
Nicholas and Billie ran to meet us yesterday evening! They had just escaped ambush by native indians, biting giant mosquitoes, snapping alligators, and survived the jungle! They were a mess! Nicholas was all smiles and loves Ms Billie! They were playing up a storm! I don't know who was having the most fun!
She gave me a warning that something may be wrong with his mickey button as he had a "secret" but wouldn't tell her. He was messing with it and I asked him if it was ok. This little look flitted across his face! I talked him into letting me check it and it was fine! He sighed and said, "No more worries!" He hates having it changed out! He complained with a headache for two days and today was nauseated this morning but seems fine now. I just spoke with him and he was eating yogurt! "I love you Momma!" Awwww, sweet words that are pure music to my ears!
Spencer, aka Mr Independent, has a newly found independence! It's so precious! Wants to do EVERYTHING himself! Where on earth did my baby go? Time is just flying by! Precious time. I want to sit down with them in my arms and just stop time! Keep them little and innocent. The little worries they have now are nothing compared to the future! I find myself continually praying for protection for them. I'm just amazed at how time flies!
Speaking of which, Mamaw and Papaw will be celebrating their 60th Wedding Anniversary on July 24th this year!!! God has richly blessed us! 10 yrs ago we were celebrating their 50th and I was expecting Nicholas! See......time is flying! Shhhhhhhhhh, we are surprising them with a drop by celebration on the 27th! I think it will work out wonderfully! This is making me cry! Thank you Lord for Mamaw and Papaw! They are so precious!
Please remember all the children in bmt, transfusion dependent, or treatments. Pray for miracles....
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 16, 2008 8:09 AM CDT
Hello,
Nicholas received platelets on Thurs and did well. He actually broke out with one hive but it was before the transfusion began! Crazy! He had one more but his counts were 5k, hgb was 8.1, and his anc was 1764. He did well with everything and we took him to get his glasses repaired! He and Spencer were goofing off and actually broke the spring in his frames. They had to be ordered!
He is feeling so much better. He wasn't much grumpy at all this weekend! :) He was feeling fiesty, pesty, and jumping around! I'm not sure what made the difference! He was just feeling better. He is a little on the pale side and I'm sure his Hgb will bottom out this week and he could be feeling on the rough side by the end of the week. Hopefully, he will still feel fiesty!
Grabbing me around the waist and kissing me he said, "Do you know who I love?" I asked him "who?" "He said, "My precious mommy!" Awwww, he is just the sweetest! He has loved on his Dad all weekend too! Dad got lots of hugs and kisses for Father's Day! He couldn't walk without stepping on someone's toes! I wish I could capture every precious second but that is just impossible.
Spencer has had a good weekend too. They played on a slip n slide and in a kiddie pool that his legs and head hangs out of but he still had fun! Too funny! Nicholas laughed and said, "This is the greatest day of my life!" He says that quite often though! Every day is his greatest day! Don't you wished we lived like that?
Keep praying for us as we are in desperate need of miracles! Remember all the children that are struggling with bmt, treatments, and transfusions.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, June 11, 2008 8:00 AM CDT
Hello,
Nicholas was a little on the grumpy side again last night. I'm not sure what is going on except for the usual side effects of dropping counts. Spencer stayed down at Mamaw and Papaws for a while and I guess Nicholas didn't like that either! I guess this is his new norm. I don't like it but who said I liked FA? I hate it! I hate the effects of it anyway! He just seems to be aggitated and lashes out really hateful about the silliest things. Silly to me but not to him. I think he is getting aggravated because Spencer seems to be having all the fun while he sits home "in this boring house!" I really think it is bothering him due to what I can pick up in his mutterings. I will ask him what he says and he will usually tell me. Who can blame him? He needs to have some fun! Some distractions! He is looking forward to VBS and hopefully, that will perk him up some, then, it's a countdown to Camp Sunshine! He keeps asking what the date is! Hopefully, we can fit in something fun for July! That would be good for him. A break in the routine. Anything to distract him and give him a little sunshine in his day!
Spencer is feeling much better. Throat isn't sore at all! Blisters are clearing up as well. The culture should be back by this afternoon. I really liked the clinic we took him too. It's the After Hours Clinic! We were in and out in no time and getting to speak with the nurses is really easy as well! He is really enjoying Camp Bethel as well! He is so tired in the evenings though! He is getting more exercise that is for sure! They are always doing something different each day! They had their bible lesson yesterday and today they get to go to the lake to play! So precious and innocent. He will not take his shirt off to get in the water! Too cute! Wish we could keep him this way forever! HA! I guess they have to grow up though. Bummer. It's too fast for me! He is growing so tall! He is about 3 to 4 inches taller than Nicholas! Don't dare to mention it though! Nicholas will stomp off, swinging those little arms ninety miles a minute, and quarreling up a storm!
Keep praying for all the children in bmt, treatments, and transfusions. Remember those getting close to bmts as well. Pray for us.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 9, 2008 10:44 AM CDT
Hello,
Nicholas did well with his transfusion last week! His platelets were down to 5k, hgb was 9.8, and his anc was 2029! He has two huge bruises on his legs!
We did make it back to Burger King with the three story play area! Yes, I did take him since his ANC is above 1500!!! He found some little friends to play with but they had to leave. Later, this weekend he said, "I wonder why I can keep friends! It must be because I'm a four fingered kid instead of a five fingered kid!" He very seldom says anything about his fingers! I was surprised and ask him what he meant. It was because the little girls had to leave the Burger King! He thought it was because of him. He cannot play long at all without getting his breath really hard! His stamina is definitely gone. Even at home, he has to sit down and rest. He gets so tired and especially with temps in the 90s! He was so aggravated because I made him come inside! He said, "It's either too cold or too hot!" He loves outside!
When we arrived home Thurs eve, Spencer fell asleap on the couch. He felt warm, had earache, and throat hurting. Friday, he slept all day long! Saturday, he felt much better but when I looked at his throat, he had white patches on it! I took him to the dr and the rapid strep was negative but the culture will tell the tale! They put him on antibiotics and it did help! He does have some little blisters or hives on his fingers that I'm watching. I hope and pray it isn't a reaction to the antibiotics. He is feeling so much better though. That is the worst earache that he has ever had! I think playing so hard in these high temps and then getting into air conditioning has made him sick! He plays hard! He has been so sweet! He wrote me a note the other day and it said....."Mom is so sweet, she is sweeter than feet!"
HA! HA! I wouldn't take anything in the world for it!!!!
Remember all the ones in transplants, transfusions, or treatments! That covers hundreds of children and adults!!!
Miracles, Blessings, Bear Hugs, and sweet feet!
Donna
Wednesday, June 4, 2008 9:00 AM CDT
Hello,
Nicholas is great, being a little imp and as sweet as his normal little self! He will come up to us and give us the biggest hug, while patting, and saying, "I love you so much Mom/Dad!" So precious! Last night, he wanted me to lay down with him before he went to sleep. We seem to get the giggles during this time! It always happens when Spencer is asleep or trying to go to sleep and we are suppose to be quiet!! Snuggling and laughing at my crazy jokes! He got so tickled! I absolutely love to see him this way! Awesome time together! He will take his little finger and tap the end of our noses! I tickle his face! He will grab my arm and hug and kiss it! Then, I kiss his little face and tell him how much I love him! I pat his cheek really fast but softly just like he likes and he says, "Hmmm, Hmmmm, Hmmmm! I love you Mom!" Precious...
Spencer was sooooo tired last night! He was very whiny but perked up after he had eaten a huge dinner! I do believe exercise is good for him! His appetite has picked up and I know he is sleeping more soundly! He was so sweet after his bath last night too! He was needing some Mommy time and after lots of holding, hugging, and kisses he was feeling much better! He said, "I love you beautiful Mommy!" See why I love my babies???? So precious! I wouldn't trade it for the world! Precious...
Please remember all the children going to bmts or in bmt, transfusions, or treatments. BJ, Samantha, Natalie, Nicholas, Justin, McKayla, Alicia, Anthony, and many. many more!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, June 3, 2008 11:17 AM CDT
Hello,
Nicholas called and said, "Mom, did I tell you what we saw yesterday?" I told him no and then he went on to say other things and was about to hang up the phone and I asked him what he saw...he said, "Oh I forgot to tell you...it was a turtle!" He and Billie were throwing rocks in the creek and saw a baby turtle! He remembered it this morning and told me!
I think he missed Spencer yesterday! Spencer of course was having too big a time to miss anyone and cried when I picked him up! I went too early I guess! Too funny! He was wanting to play in the play area and I guess I messed things up for him! Oops! Spencer fell asleep on the way home, yes, he was tired! Nicholas was pouting because Spencer didn't miss him! Oh, if it isn't one thing its another. Boys! ;))
We will be going on Thurs for platelets. His coloring has been a rainbow this week as he received red cells and watched him get some color in his face then seeing them disappear! He has had some really dark coloring around his mouth, head, joints, and stomach area as the red cells peaked! I don't realize just how pale he looks until he get his red cells! The darkness doesn't look good but compared to the paleness, I understand why but I don't have to like it! No one else would ever notice I guess, just a mom thing! His face is getting petechia on it and that contributes to his facial coloring as well. This process of rise and fall of counts are really getting to me! It's so hard to watch and then when he feels so good and I hear him laughing, it eases all pain away and I forget! Then, boom!, another smack of reality in your face as the petechia rears its ugly head! This is a weekly physical rollercoaster for him! Please pray for all of us. Realizing that time is so precious and I just want to hold him all the time! And get too stressed when we don't have enough time to fit everything in! Yes, there is always an emotional rollercoaster as well!
Please remember all the children preparing for bone marrow transplants(bmt) that we know of and I'm sure there are so many more that we aren't aware of! Pray for all the families.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 2, 2008 8:09 AM CDT
Hello,
Nicholas did have one hive at the end of the transfusions but did well for the most part! Did the red cells perk him up? I guess overall the answer is yes but I really think the sleep in on Sat morning did a world of good. He didn't get up until 10 am! He had a big day Fri at school. He received a medal for academic acheivement, an honor roll award for the year, and a golden seal Presidents outstanding academic acheivement award! He was the smallest little man there with the biggest smile! He held his head down and finally had the nerve to look up and at the crowd! It was so cute! He just smiled so big and sweet! My camera just couldn't capture it! He looked at me and I blew him a kiss and he lapped it up like a puppy! So cute! Linda videoed it for me but I don't think she captured it either! He was so proud of himself! Then, Sat. Spencer brought home the math award for his class as well as a super reader, super speller, super helper, super friend certificates! He was thrilled!!!
I'm thankful that everything is as well as it is! I'm very tired and exhausted but overall I think Nicholas is doing good considering what all he has to go through. He seems less grouchy and irritable! He is ok, no temps, the nausea has passed. I think that may have been to a 1 cc increase in formula! Yes,I said 1 cc! His body had to get use to it and I think it has! The next item on the list is VBS at the end of this month! I will definitely be one tired little pup then!
Spencer began at Camp Bethel this morning! I'm hoping all is well there and he really enjoys himself. I'm really excited for him as well! I think he will love it! They get to swim three days a week and go on hikes as well as a bible lessons, crafts, and reading/playing time.
Praying for all the children in bmt, treatments, or transfusions. Keep up the prayers for Mamaw and Papaw. Pray for Nicholas.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, May 29, 2008 1:56 PM CDT
Hello,
We are getting transfusions today! Platelets have gone in and red cells are in the process! He is doing well so far. Hoping the red cells will perk him up some! He wants Mom to do everything! He was very nauseous this morn and won't eat at all! That means he is sick! Nothing showing up so far, no temp, just indicators that something is going on. Pray the red cells make him feel better. I wish I knew for sure what was going on. I may never know. I went bead looking this morning and he called me twice to come back to the hospital. He just wants mom to do everything!
Today is Spencer's last full day of school. Tomorrow and Sat. they go half days and then its on to Camp Bethel! I do have him signed up for day care there. I took him up and showed him where he would be going and he was thrilled. He gets to swim, go on hikes, and picnics too! He will love it I hope! He will be on a schedule every day and its like VBS every week. I do hope he enjoys it. It will give Sissy Bear a break anyway!
Praying for all the children in bmts, treatments, and transfusions! Pray for Nicholas.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, May 28, 2008 11:30 AM CDT
Hello,
Nicholas told his dad that he was feeling low! He said, "I guess I need my platelets!" Dad told him he would be getting red cells too and that would help him. Nicholas laughed and said, "Like getting a tankful of gas!" We will pull into the clinic tomorrow and say, "Fill'er up!" I think it will cost a lot more than a tank full in the Van though! HA! I think we are complaining about gas prices but comparing to 100 cc of platelets and the cost there...gas is cheap! HA! I know.......no comparsion! Nicholas can go 3 weeks on about 340 ml of red cells! He is getting more miles per ml than I can in the van! I must be really tired!
Overall, Nicholas is droopy and having to rest more and more. I can see a big difference in him. He just keeps pushing himself though. "I never give up!" motto has definitely pegged him to a T! Bless his little heart! He is still on the grumpy side and just rolls his eyes in total exasperation! No patience at all. I was thinking about this and then it hit me that he could be having some hydrocephalus issues if the pressure is too high in his brain. Pray that issue isn't the reason! I'm trying to figure this out. I just cannot put my finger on it yet! If he isn't fighting a cold and the red cells don't help, then it has to be something else! I'm sure the red cells will make a huge difference but thinking back, he just didn't rebound last time like I thought he should. Never like I really want of course!!
Nicholas' IEP meeting was yesterday. He will be going to the middle school next year! Ms Trish told him yesterday that she will be his teacher again for one more year! He said, "I don't want to hurt your feelings but can I have someone else!" We couldn't help but laugh! He was so sad that she wouldn't be his teacher next year and then he came up with that! Too funny! Maybe it was the sol tests!!!! HA!
Spencer had his picnic and field day yesterday. They had a great time outside and field day inside! We couldn't help but laugh at the children trying to carry a ball between their knees and drop into a bucket! They were so precious!
Pray for all the children going to transplant! I'm really thankful that we have what we do with Nicholas. I realize it could be a lot worse and just cherish every second, minute, hour, and day with my babies!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, May 27, 2008 7:43 AM CDT
Hello,
We are all well and still kicking! Nicholas received his platelet transfusion on Fri and did well. His counts were 10k, hgb was 8.8, and his anc was 1600. We'll take it! He will probably need red cells this week as well as platelets. He received 0+ last week and on Fri! They seem to last longer than A+! I do thank God for all the donors that give so unselfishly and on a frequent basis. Nicholas has been on the grumpy side for some reason. Not as bad as last week, but he seems to be fighting something. He says his trach hurts. He did cough up some blood yesterday which put me in "alert" mode of course! It is not knowing what is going on that gets to me! I wish I could figure out what he is fighting. May be a cold as he has been sneezing off and on!
This is the last week of school and is crazy to say the least. I'm just trying to hang in there and go with the flow! Needless to say, I'm exhausted and just had to push one foot in front of the other yesterday! We did have a cook out and it was wonderful! Nicholas was arguing with Sissy Bear and his little eyes were just twinkling! He was trying to tell Dad something and kept getting tickled and making everyone laugh! It was so precious! I wish I had my video out!
Pray for all the children going to bmt! Seems like there are several at one time, ready to go, getting ready to go, or heading there! Alicia, BJ, and Dylan come to mind! Pray for the families as well. Pray for the children that are continuously supported with treatments or transfusions.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, May 22, 2008 10:02 AM CDT
Hello,
I just spoke to Nicholas and he said, "I'm feeling droopy!" He sounds fine though. Billie said yesterday that he threw rocks in the creek and then was totally worn out for awhile. I can tell he is much weaker though then he will perk right back up. He is just the sweetest little booger! He is rotten to the core! I told him I was calling to check on him and he said, "You don't have to do that, I'm fine!" Then, when I hung up he said, "Have a nice day Mom!"
He has one more day of math officially and that is it! He is one happy camper! I know Spencer will miss school! He keeps saying that he isn't going to 2nd grade! I cannot believe my babies are growing up so fast! I'm amazed at how fast time really flies by! I wish I could pack in everything that is just fabulous and let them experience it! It is amazing that they are totally satisfied with just the simpliest of things. Throwing rocks in the creek is one of their favorites! It's time spent together that is most important! Doing fun things or just snuggling! Doing silly stuff! Anything to make them laugh! I love to listen to their giggles and laughs! The other evening we were seeing who could kick the highest and it was hilarious! Nicholas did get so winded he had to stop and rest and then turned so pale. Spencer had chocolate and was going full force! He finally wound down and we were so tickled at him! Nicholas was laughing so hard!
I appreciate everyone for supporting us all the time. The prayers, blood donations, bone marrow registeries, cards, money, or just a thought, it all counts! It is what sustains us. I know everyone is getting tired of hearing our story! But I just cannot quit. Its my child's life I'm talking about. NOT a LITTLE thing! Please don't ever stop praying for him and all the others in hospitals. Pray for the ones that have been there for a long, long, time. I wish I had the energy to do what I really wanted to do. We will be going for transfusion tomorrow. He doesn't have near as much petechia this time!
Praying for miracles, blessings, and lots of bear hugs,
Donna
Wednesday, May 21, 2008 1:27 PM CDT
Hello,
Daddy Bear is home and the boys are happy he is! Nicholas stayed ont he phone with them all evening, playing "Guess what I'm thinking of?" I think Sissy told him what she was thinking of was beautiful and nontangible....he first said a butterfly and then said rainbow! She couldn't believe that he guessed it so fast! He is doing good so far! He has been itching and only had one hive but other than that he has not had a temp and for the most part is doing good. He hasn't had much homework and is as happy as he can be! He is practically finished with school!
I woke up last night and total silence met my ears! Then, Nicholas sighed and rolled over. Immediately it hit me, the air compressor wasn't working! I got up to check and sure enough it had quit! That is what woke me up! Dad hooked up our spare and we were back in business! Nicholas jumped when the other one turned on but he didn't wake up totally. Spencer sat up in bed chattering away then lay back down. He was asleep!
Nicholas hit 60 lbs yesterday! Whoo hoo. He hadn't been gaining at all in a long time. He doesn't really need to gain any more unless he gets taller. He is heavy as lead as it is!
I realized I forgot to update yesterday but there wasn't anything new on the homefront! Everyone is still sleepy and grumpy as ususal! HA! Spencer and Nicholas have about 7 days left of school and are so happy! Summer is here! Oh, how I wish we could go on a long vacation but that just isn't to be! Hopefully, we will get to do some things around the house. They love just doing simple things anyway!
Remember all the ones in bmts, treatments, and transfusions. Remember Nicholas as he is continually battling.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, May 19, 2008 8:04 AM CDT
Hello,
Friday's tx went well! No hives! His counts were platelets 6k(not! they were 0 by the looks of him!), hgb was 10k, and anc was 1748. Thankfully, the ANC is staying up but I truly feel it isn't true. I think he continues fighting something. He was so grumpy. Irritable. Breaks my heart when he is like this. He will feel better for a while and then gets grumpy again. Saturday and Sunday were better! He seems to be ok and most of the petechia has disappeared except for purpura on his thighs, thats a purple dot, bigger than petechia. It breaks my heart seeing him speckled like that. It was all over his body. How long can his little body continue to tolerate this? How long can mommy's heart last?
Between brother-in-law, cousins, and extended cousins in the hospital, I think there is a family reunion going on! Yes, Joyel is back in the hospital with kidney stones again! Hopefully they will blast it this time! He went in last night but has suffered all weekend with it! Pray for Sissy Bear! She couldn't sleep last night again so I know she will be a snail today! More than ususal! HA! Pray for the rest in there too!
Pray for Natalie, she is on her 3rd bmt, Justin, BJ, Will has strep, Andie, Dylan M and Dylan S, Sarah, and I could keep naming! So many needs our prayers!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, May 15, 2008 12:04 AM CDT
Hello,
Well, we have one happy camper!! Social Studies SOL was today and forever in the past! We thought we were going to get the weekend to study but it was this week instead of next! We crammed last night and he was a crispy critter by bedtime! We called it quits and decided that he would be ok! Whatever he makes he makes! He is so happy! No more homework for this year anyway! He is such a jewel!
He had petechia all over his legs last night and bruises galore! I know his platelets are low so he is just taking it easy for the rest of the day! He sputum was a little tinged this morning but no more! I'll be glad when he gets tx tomorrow! I could not get to sleep last night! I may have dosed some but overall between Nicholas and Spencer tossing and turning all night, I didn't ever go into a deep sleep! Needless to say, I have a huge headache! I took some sinus medicine and that may have caused it but I don't really think so! I'm 99 percent better on the croupy side but not on the sleepy side of life!
I'm starting another project! Will post a link when its finished! I'm really excited! I know! I needed something else to do but I just have to be doing something all the time! I need to stay focused on this or that! I guess that is how I cope! I'm just trying to help others as well as myself! It always helps to lighten someone else's load.
Please remember all the children in bmt, treatments, and transfusions. And the adults too! So many we see weekly taking treatments, its heartbreaking!
Miracles, Blessings, Bear Hugs, and toothpick to hold up the eyes,
Donna
Wednesday, May 14, 2008 8:46 AM CDT
Hello,
Well, how did you like the surprise! The annual was dedicated to Nicholas! He was totally surprised and we had his classmates sign it! It was so sweet! Yes, I cried! I cannot belive he will be in middle school next year! Ms Trish says he will have a new teacher but that was before Nicholas told her, "I'm really going to miss you!" She had tears in her eyes! I just don't know how we will make it without Ms Trish! Waaaaaaaah! Now, I'm going to whine!
The other night Nicholas said, "Mom!" Scaring me out of bed, he said, "I bumped my head....right here!" I felt it and of course, he couldn't remember how he had gotten it! Even in the dark I could see his eyes twinkling, he laughed and said, "My head is going to be in pieces before I get to heaven!" That boy! He never fails to make me laugh! He is rotten!
He says he had some problems on his reading sol! He said, "I had trouble with 2 or 4 questions!" I asked him how many were on the test, he said, "42!" It's untelling what he made though! I told him it didn't matter anyway he was going to 5th grade! Ms Trish made him a "congratulations" poster while he completed the test! It was so colorful and of course Spencer got jealous because he didn't have one and made himself one! Dad and I signed his for him! It was cute! Spencer was tired and major grumpy anyway and nobody could please him! He was just tired and sleepy and was the first asleep last night!
I'm still croupy and now Sissy Bear has it! She said I gave it to her but that couldn't be true because I still have it! HA!
Pray for all the children going through treatments, transfusions, and transplants! Pray for the families as well!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, May 13, 2008 1:53 PM CDT
Hello,
Well, I called Nicholas yesterday and was encouraging him to study for his social studies test. He said he knew it! I asked him if he knew it well enough to make a hundred! He said, "Mom, I'll try my best! I'd rather die than to disappoint you!" Oh! My heart went in my feet! I told him I'd much rather he disappoint me!!!!! He thought that was funny! He is rotten! He knows exactly how to get me! I can't even remember how well he did now! I think he only missed 4 questions. We practiced after I got home for his reading sol today! He couldn't settle down and go to sleep and had to get up early this morning to get everything done before they came! I called to see how he did! He was so happy it was overwith! He said the stories were interesting and he didn't have too much trouble. I just hope he passed it this year! I know he tried hard! He has one is social studies next week! We will have to start reviewing now! Goodness! I'm glad he doesn't have to take one in math! The teacher accumulated all his papers and work through out the year for math! I'm glad! He would definitely have major problems there. Who knows! I cannot stand to see him get so frustrated that he cries and gets upset because he cannot remember the answers. Those red cells really make a difference in his concentration and memory! I'm so thankful that he can get red cell tranfusions and platelets are available every time we go! That is such a blessing. Thank you donors!
Nicholas is rotten today! He kept telling me bye when I called earlier today! He didn't have time to talk! Too much to do! He was eating! He has been eating everything in site! Almost constantly! That means he is feeling fine! He is sick when he doesn't want anything to chew on! He has Ms Billie wrapped around his little finger!
Pray for all the ones having bmts, treatments, and transfusions!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, May 12, 2008 7:59 AM CDT
Hello,
Happy Mother's Day to all the wonderful mothers! Motherhood.....nothing like it in the world! Spencer was so excited that he couldn't wait! A box had arrived earlier in the week and he grabbed it and wouldn't let me open it! He informed me that he knew what it was and that I couldn't open it until May 11th! OH boy! We were lying in bed yesterday and he was giving me hints! Then he said, "I wonder how that phone works?" I pretended that he was talking about the one in the kitchen and didn't let him know he had let the cat out of the bag! It was so funny! He and Dad put it together and it was a white french phone with butterflies all over it! It was adorable! He had picked it out and Dad ordered it for them! It was so sweet and precious! Treasures that won't be forgotten! Sissy Bear gave me the most wonderful, much needed gift and that was two solid hours of sleep! Not much is better than that! I have been fighting a severe sore throat/sinus infection and was totally exhausted! Thanks Sis! We did get to have dinner with Mamaw! She is so precious! The boys gave her big hugs and kisses too! Of course, Papaw got jealous and they had to give him some too! They always do though!!! We ended the day with Mom between two little precious boys reading a Junie B. Jones story! Spencer said, "Thanks Mom for reading Junie B!" and gave me a huge hug and kiss! Awwwww, the joys of motherhood. Nicholas came over with another one to read! My voice was almost gone and we barely got through the other one through bouts of coughing and I had to turn him down! He was laughing when he brought it to me! He is a little imp!
Yes, he is feeling much better since he received red cells again on Thurs and platelets too! He had petechia all over his entire body and his plts couldn't have been 5k! His hgb was 7.7 but he was too droopy and needed the boost since he had been so sick. He is doing much better now! Thanks for all the prayers! I couldn't help but cry when I read prayer requests on several of the others cb pages! Thanks for loving my baby so much! Please remember him this week as he will be taking some SOL tests. Hopefully the red cells will help with his memory too.
Pray for Billie Jr as his counts have dropped to bmt level. Pray for all the others that are going through their 2nd and 3rd, Justin and Natalie. Pray for all the ones that are transfusion dependent or on continued treatments. Pray for the ones attending the cancer center that is beside of St Judes as well.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, May 7, 2008 7:24 AM CDT
Hello,
I do believe that my baby is getting better! I didn't think so early yesterday evening, as he was still grumpy but late last night I could see a smidgen of a difference. He definitely needed that second antibiotic. His face has petechia all over it and I know his counts have already bottomed out. I'm worried about waiting until tomorrow but as long as he isn't coughing up blood, I'll try to be cool! I told him to lie low today! I could tell he enjoyed his day outside yesterday! He was filthy! I love it! That meant he felt like getting in the dirt, throwing rocks in the creek, and just playing outside! He has a huge bruise on his shoulder though! He cannot remember what happened and gets really agitated when I ask! He said, "You know I can't remember when you ask me those questions!" Touchy! Attitude? I reckon so!
Spencer played hard and slept well last night! He woke me up saying, "Owww!" He had bumped his head during the night. School will soon be over and he will be in the 2nd grade and Nicholas in the 5th! Another indicator that time is flying by really fast!
I have more news but will have to wait until I can scan some things in! Curious huh! ha! Wait and see......
Joyel Wayne is suppose to come home today....so pray for them! Sissy Bear is exhausted! Bless her heart! She is definitely wondering "How on God's green earth do you do it?" HA! I continually pray for strength and it is continually granted! God is good! God is awesome!
Pray for all the others.....just too many!
Miracles, Mercy, Blessings, and Bear Hugs,
Donna
Tuesday, May 6, 2008 6:53 AM CDT
Hello,
Sissy Bear's husband Joyel Wayne(Daddy Bear)does have a kidney stone that is blocking the flow! They are going to try to flush it out and if not they will blast it! Its big enough to blast and if it were me I'd tell them to blast it! He is in tremendous pain. Please pray for them. Nicholas called him last night and talked to him. I'm sure that made him feel much better! ;>))
Nicholas wasn't feeling well yesterday evening! He was grumpy and wanted his way in everything! He has a dark look about him! It may be where he received red cells and I'm not use to seeing color in his face! Pray the antibiotic that we put in his g-j tube doesn't make him sick. It did in the hospital and Walmart had a time getting it for us and he had his first dose last night. Pray hard! Pray it helps his cold if that is possible. He isn't running a temp, just sneezing and a runny nose. I'm sure he just doesn't feel well. Jeff doesn't either with his allergies. Nicholas met him at the door and told him that he had allergies too just like him!
Guess what Spencer did last night? He helped with the antibiotic! I knew he would! He "watched" it for me! He is too funny! Nicholas said, "I thought you wanted to hold it!" in a not-so-nice-tone! I told him that attitude had to go bye-bye! Spencer was feeling good and in a pesty mood and with Nicholas feeling bad you can imagine my evening! See why I need prayer? patience, grace, understanding, wisdom, strength, and whatever it takes not to go anymore crazier! Is that a word? HA! Maybe crazy would be a relief! I know! I'm crazy already! That helps you know! Oh well! Wanna join in the fun? Wanna walk a mile in my shoes? I wouldn't trade shoes for the world! I love my babies and even though the tread is about worn off, I wouldn't give up my special hugs and kisses for anything in the world nor would I have wanted to miss this opportunity to be their mom!
Where has time gone? Nicholas will be 10 and Spencer 8 this year!!! I just cannot believe it! God has blessed us beyond measure! God is so good! I remember when Nicholas, less than a day old, just had his esophagus(it was attached to his windpipe) reconnected and was being transfused with red cells. They were draining out as fast as they were going in. Tubes were sticking out of every opening in his little body! I went back to the room and cried out to God to let him live! He did! The bleeding stopped within 3 hours. He has blessed us with his presence for 10 years almost! Isn't God good? Thank you Lord! Gazillions of blessings! Not only to us but to others as well.
Continue praying for Natalie, heading for her third bmt, Justin, Lindsay, Will, Jo, Jacy, Haylee, Christian, and all the ones we don't even know about! Pray for all the ones in treatments, transfusions, and just diagnosed and their families!
Miracles, Mercy, Blessings, and Bear Hugs,
Donna
p.s. don't forget to look at the benefit ride photo at the top!
Monday, May 5, 2008 7:41 AM CDT
Joyel Wayne is in some type of kidney failure and they are doing a ct scan with contrast to see if he has a stone blocking it.......please pray for him and Sissy Bear!
******************
Hello,
Wow! Lots of guestbook entries! Thank you all for praying for my baby! He is doing much better now. His blood was positive for strep pneumonia. He probably got it via respiratory! It can cause strep, ear infections, pneumonia and it can make my baby real sick! His temp went to 103.4d, heart rate and respiratory rate increased, and had to be on oxygen! He also had pneumonia in his left lung and was still coughing up blood yesterday. He has now developed a terrible cold! I gave him some medicine yesterday and it made him really drowsy. After a two hour nap, he felt much better. His coloring is really off and I'm worried about waiting until Thurs. for transfusions. We'll just play it by ear or should I say eye and watch him carefully.
He is back to his little sassy self! Very blunt and tells it like it is! We were doing some school work yesterday evening and I kept asking him questions! He went to the board and wrote me a message! "NO MORE!" HA! He was tired of social studies!!
We did get to meet Spencer when he got off the bus and they hugged and kissed! It was so precious! Spencer had drawn a picture of Nicholas in the hospital and it read.........Nicholas' motto: I never give up! I could just burst into tears reading it now! He pegged Nicholas though!
We were so glad and thankful to be home!. Nicholas really missed his dad and bub! He has hugged and hugged his dad! Of course he and Spencer have already clashed horns! Spencer wants to help with his antibiotics and Nicholas is petrified of anyone that touches anything that is connected to his picc line! We called a truce and finally found a solution, then Spencer decided he wasn't helping anymore! In the middle of all of this, Nicholas decided to get something else off his heart! He was crying and said, "Why do you fill up the stockings! I thought Santa was suppose to!?" Whoa! It is no wonder I have whiplash! I guess he just needed to get it off his heart! I told him that Santa would if he wanted him too! Of course, he is happy now! Mom will find a solution to this! Santa will just have to remember that Nicholas loves red and Spencer green! Color coded pkgs! That's the ticket! Why now? He must have been worried about this for 5 months!!!! Never a dull moment at our house!
Please pray for all the ones suffering. There are so many at St Judes and upstairs on the peds floor! Breaks my heart! Please remember Pat, Justin, Dylan S, Nick J, Haylee, Dylan M, Natalie, Flynn family, Sissy Bear, Daddy Bear has kidney stones and all the ones not mentioned here!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, April 30, 2008 1:45 PM CDT
Hello,
We are still in the hospital. Besides pneumonia, his blood is positive for something and we are waiting on sensitivity tests to see what antibiotic to send him home with! He is on three antibiotics now. He is really nauseated, temp is gone but he is now chilling, and still coughing up some bloody clots. He wasn't coughing up anything and that really worried me and I could tell he had something he was trying to get up. I used saline to help him loosen it and it was a huge clot! Any amount of blood is too much to be coughing up. My gut feeling is that he was too dry and then began coughing up thick secretions which is tearing the lungs....just a momma theory!
He did get platelets and red cells Mon night/Tues morn. His cbc today showed his hgb had just risen to 8.3 and that bothers me of course! His platelets were 89 and that was a good rise as they were not hla matched but he had to have them! Not sure on the plan for platetlets on Fri. I'm sure we will decide when we do a cbc tomorrow morning.
He is a little more perky than on Mon and is missing his dad! He did flirt a little yesterday with one of the nurses. This morning, he wanted to know if he would get to go back home! I told him of course he would, that the antibiotics would kick in and get rid of the bugs and he would get all better! He was a little homesick and missing his daddy!
Keep praying for him and all of us!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, April 29, 2008 10:10 AM CDT
Sissy Bear here!
Nicholas is in Johnson City Hospital. His temp has been 103. I talked to him this morn.; he was getting the last bit of red blood cells. He got both, platelets and red blood cells last night/early morning. They think he has pneumonia in lower left lung. He is a sick little boy, so keep praying. As I hear, I will let you know.
love,
Sissy Bear
Monday, April 28, 2008 9:43 AM CDT
Hello,
Nicholas is sick this morning! Woke up in pain, temp, just couldn't get his breath! I feel sure he has a mucus plug in his left lung! Please pray for him!
He had a wonderful weekend with the ride and just being outside was a wonderful treat for him! Boom! Now he is sick.....I checked his temp last night and he was cool as a cucumber! He gets sick so fast!
Please pray for us! More later!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, April 23, 2008 7:53 AM CDT
Hello,
Nicholas is doing ok for the most part! He ran a low grade temp yesterday but doesn't act sick. I'm out of nurses at the moment and hopefully will get back on track with one next week. Pray that all will fall into place.
We go tomorrow for a platelet transfusion and are praying that we do not have any hives! I'm just hanging in there and cleaning like a mad woman! Everything is so far behind! I don't think I will ever catch up! Nicholas has enjoyed me being home! I've gotten lots of sweet hugs and kisses! We have laughed and laughed! He is so sweet and precious! Spencer has enjoyed me being home too! He loves getting off the bus at home! he and Dad planted potatoes last night and of course he had to plant sunflowers! Last year, I think we fed the moles and rats or racoons! We didn't raise any potatoes or harvest one ear of corn! We had bunches of tomatoes though!
Pray for Joel Cantrell, he was working under a vehicle and it fell on him. He was able to get out but they had to med flight him to Holston Valley. Be praying for him. He is the pastor at Indian Creek FWB Church. Pray for us. I'm having terrible dreams about Nicholas that keep haunting me.
Rem the motorcycle ride this weekend! Come join us if you can!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, April 18, 2008 7:56 AM CDT
Hello,
We went yesterday for his platelet transfusion! His platelet count was 8k, hgb was 10.2, and his ANC was 1968 but his white count was too high for him! That is an indicator that he is fighting something! Probably the colds that have been going around at our house! At least his marrow is responding a little on its own, the white cells! He is on a higher dose of G that stimulates the white cells but I don't think it was the meds!
When the marrow begins failing, the platelets are the fist to deteriorate, then the red cells, and lastly, the white cells. That has been true in Nicholas' case. It has been devastating to watch him slowly deteriorate.
He is older now and understands more. We visited a pet shop yesterday and he fell in love with the little black honey bear hamsters! He was drooping around and asked, "Don't you want me happy?" Yes but you know you cannot have fuzzy little pets in the house! "Why did God make me this way? If I didn't have this trach, I could have a hamster!" Then, he figured out a solution! "Can I have one when I'm an adult?" I told him yes he could and then he would have to clean out its cage! His nurse told him his wife would probably be the one to clean it out! He said, "If its mine, I will definitely clean it out myself!" Mr Independent! He was satisified then! He breaks my heart when he talks about being an adult and what all he is going to teach his children!
I did pick up a stroller yesterday for when he gets tired! I can see such a huge difference in him. He gets really winded and will find a place to sit down! He does improve with the red cell transfusions! He will run and play but not for long periods at a time and will just flop down! The more active he is, the more his hgb will drop! What a trade off! The faster the red cells are used up the more he will need extra transfusions. He has been transfusion dependent for over 3 years now! We are so blessed to have him in our lives!
Don't forget the 2nd Motorcycle Benefit Ride for him on April 26th, 11:00, old Wal-Mart parking lot! Cars and trucks are also welcomed! Donations only! Don't forget! We are going to try have Nicholas there to Meet and Greet before the ride and afterwards in Coeburn around 4 pm. Thanks CMA Wise Chapter, The Revelators, for hosting this annual event! Contact Kim Collins, 328-3631, k13c@yahoo.com for more details or if you want to volunteer to help!
Please remember all the children in tranplants, treatments, or transfusions! Some have had 2 to 3 bmts and their counts still aren't where they should be. Please pray for these families.
Miracles, Blessings, and Bear Hugs,
and no more pet shops!
Donna
Tuesday, April 15, 2008 8:36 AM CDT
Hello,
Ok, I just lost the update so here goese the second time! Nicholas is ok so far. He is really going to miss Barb as this is her last week. He was comparing our situation to something he saw on a cartoon! He said, “I’m like Franklin the turtle, when he was really happy that Mr Owl was coming back but he would miss Miss Koala!” Meaning, he was really happy that Billie is coming back but he would miss Ms Barb too! Too funny! I will miss her too! She was very dependable and added some stability in our hectic schedule! I guess I should be more upset with all the nursing changes but I think I’m just too tired! I just go with the flow for the most part! I do pray that we can get everything stabilized and on a steady schedule! I cannot focus on anything else at the moment but my babies!
The 13th marked our 1 year anniversary for getting platelets every week at St Judes in JC! Anniversaries are suppose to be happy occasions! I guess it is if you look at it from a blessed view! We are blessed that he is still with us! He was only in the hospital a couple of times, one time being during camp that he was transfused multiple times! Jeff and I were talking last night what a precious rich gift God has given us! More precious than jewels! Yes, it has been horrible watching him decline but God has provided everything we needed when we needed it to care for our baby! Not what we wanted but definitely what we needed! God’s grace is sufficient!
I was fussing about something the other day but can’t remember what and Nicholas began mumbling. I asked him what he said. He said, “I’m just wondering where I fit in this family!” It would have been funny if he weren’t so serious! I told him God knew I needed a special little boy who gives the best hugs and kisses in the world! He perked up, smiled, flapped his little hands, and said, “Now I know why God gave me these little stubby arms!” WAAAAH! Yes, I choked back the tears and just melted when he threw his little arms around my neck! “I love you mom!” Hugs definitely stop the fussing! All the cares in the world melted away as I cherished his precious hugs and kisses.
Last night, Nicholas wrote me a couple of love letters. Spencer told him to write him one too! Nicholas came back with another note that said, "I love u 2 Mr. Boggs!"
Please remember Pat and her family during the loss of her husband Gary. Remember all the children and adults going through treatments, transfusions , and bmts! Pray for us too.
Miracles, Blessings, and the best Papa Bear Hugs,
Donna
Monday, April 14, 2008 7:33 AM CDT
Hello,
I know you were surprised to see an update on Fri! HA! Yes, Holly, you are now current! That was funny! Nicholas did get over the grumpies and did well on Sat and Sun! He did have one hive on Sun! No one knows what to think about him breaking out in hives so far out after transfusions.
Spencer went on a field trip to see Sue, the T-rex! He loved it! It was his second time going! I really missed him on Sat! It just wasn't the same. Nicholas did a little! HA! Spencer didn't win anything at the coal fair but there were some really great projects there and of course we did ours based on the creation view!! Spencer did learn a lot and all the children loved it! Several adults came over and told him it was wonderful! He did great though and will definitely try again. It was fun. I wouldn't want the job of judging that is for sure!
I have lots of photos to post but will do it when I have time. Hopefully, sometime today. I'm having more nursing problems! Another one is leaving to get a job closer home! WAAAAAH! Where oh where are the good dependable nurses that like home health?
Please remember the family of Gary Mullins, SR. He passed away yesterday. Remember Pat, his wife, and the children and grandchildren! Also, please remember all the sick children going through treatments, transfusions, and bmts. Please remember us in your prayers. We really need them.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, April 11, 2008 2:56 PM CDT
Hello,
Long day today! They began with a huge bag of platelets and decided it would be too much volume with the red cells too! They discontinued that bag, then began transfusing the red cells which just finished! We now have to get the 2nd bag of platelets! Are you tired yet? I sure am and a huge headache on top of that! Nicholas' platelets were 6k, Hgb was 6.7, and his ANC was 660 or close to that! I can't rem. They have decided to increase his GCSF to 300 mc!
On top of that I was closing his hearing aid case and caught his milk line and gave it a big yank before I realized it was caught! ARG! It scared him so bad and just killed me! He has been so grumpy today! I'm sure he just isn't feeling well! He tells on Linda! Its so funny! "She can't put in my hearing aids good!" "She turned down the TV when the nurse came in!" "She does this and she does that!" No wonder I have a headache! I did get out to Kmart this morning and it was good to get some time to just shop! Maybe I should go out now! HA! Nah! I found this computer in the lobby and decided to update! I'm afraid to stay gone for long periods of time so I'm really not at ease wherever I go! We really need a vacation! Linda and I talked of the beach all the way up this morning and now Nicholas wants to go! As in, "Can we go today?" Wishful thinking! I'm worried about his ANC! His sputum culture grew ecoli again. That worries me as well! Do you have a headache now? HA!
I'd say my other little men are eating at Burger King right now! He will eat their cheeseburgers! Now, if I can only get him to eat broccoli! He seems to be on one thing at a time! Then, won't eat it for a while! Ok, I'm just rambling!
Please remember us in your prayers! Pray for all the ones in transplant!
Miracles, Blessings,and Bear Hugs,
Donna
Thursday, April 10, 2008 1:35 PM CDT
Hello,
Today is coal fair day and I had to bring Spencer's project down! There are lots of great entries! Nicholas asked him what he was going to win and we told him that he had already won! He learned so much during this project so he is a winner! Hopefully, the judges will also think so! I'm so pleased with his ideas and he did a wonderful job!
Guess who is at school right now and working on math! Yes! No nurse today meant that Nicholas came with me! He has been outside with his class! There were about 10 little girls following him around and he whispered to me..."So many woman and so little time!" Rotten stinker! HA! I couldn't help but laugh! I can tell a difference in him, he didn't play near as much and kept wanting to find a place to sit down! When he did, everyone would sit down with him! So sweet! Of course I brought my camera! I'll post them when I can! Nicholas looked up at me and asked, "Don't you ever take a break from that camera?" I said, "NO!" I took several of them outside last night! Along with a video of the black cat and Nicholas that was so sweet! I don't know if its too big to upload, if not, then I will share!
Tonight, we have to come back to school and WCYB TV along with the Coalfield Progress will be here for the Coal Fair! Then we will pick up our projects and take to another coal fair next week at the Christian School! I'm glad this project is overwith in a way, now I will have to clean house! We have worked on this project seems like forever! HA! It has been fun and very educational! Nicholas has learned as well! The projects are being judged right now, so wish Spencer the best!
Nicholas will get platelets and packed red cells tomorrow! I'm sure that is why he seems so tired today! He has multiple bruising! Pray for NO HIVES!
Please remember all the children that are going through all these treatments, transfusions, and bmts! Pray for the families as well!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, April 8, 2008 7:43 AM CDT
Hello,
Nicholas did ok in school yesterday evening. They have put some seeds on a wet paper towel and inside a baggie. We hung them up on the window! They boys have been amazed at the "sprouting" process! They cannot believe how fast they have grown! It definitely has been a learning experience. Nicholas will be doing lots of experiments since he has most of his math out of the way! He loves experiments! He says he is going to be a scientist!
Yesterday, he talked his Dad into cutting our one and lonely daffodil and gave it to me through a window! As I thanked him, he blew on his little finger....like he was blowing the smoke from his pistol, while smiling a huge cute smile with twinkly eyes! He does it so cute! I couldn't help but laugh! He is precious! No, he is rotten! He knew he was the cat's meow! By the way, she had her kittens! Told ya! He said something that was so funny but for the life of me I cannot remember what it was! I wish I had a brain! Or one that would function properly! HA!
Please remember the families that are going through these treatments, tests, transfusions, bmts! Prayer requests coming through are for: Libbey's Uncle Leon, he had a stroke, Hannah, with eye cancer, Phoebe Fleming, Elaine's husband John(cancer), and the family of Reva Baker, our neighbor that passed away. I'm sure I left someone off but God knows our needs.
Miracles, Blessings, Bear Hugs, and Brains,
Donna
Monday, April 7, 2008 7:35 AM CDT
Hello,
Nicholas did well with his transfusion last week! No hives! He did break one of the tubes on his hearing aids and we had to make a trip to get them repaired! It was a very long day to say the least! We survived though and are now on to the next week! We had a new nurse with us and she was very helpful! Yes, I did say a new one! You wouldn't believe me if I told you! This one is only temporary though! She is having health problems! I'm just holding my breath for a new one! Too much drama! Too much on Nicholas and all of us! Just pray this next one comes through for us! If I were reading what all has happened to us on someone else's website, I would not believe it! No one should ever have this much drama! No one! So far, we have learned to adjust and just roll with the punches!
Yesterday was beautiful. Dad and Spencer were going outside to do some things! Nicholas wanted to know when he could go out! I told him to get his shoes on! Spencer went and helped him put on his socks and shoes! So sweet! Nicholas whooped and hollered! His little eyes brightened up and he smiled from ear to ear! He did stay out for a while! We put the training wheels back on the small bike and Nicholas finally got up the nerve to ride it! I told him that the tricycle was just too little! He was riding it with his knees sticking out!!!! He smiled from ear to ear when he realized he was able to ride the bigger bike! Bless his little heart! He was sort of scared on the bigger one but finally relaxed enough to enjoy it!
I have a feeling we will have kittens! Yestereday, BB Girl wanted in the house all evening! I dreamed she had them in my lap! And I'm dreaming of Grizzly Bears up at my brother's house! I dreamed that Spencer and I were trying to get in his truck and hide! I woke up!
Pray for all the children going through transplants, some for their third time! Pray for miracles! Pray for healing, comfort, peace, contentment, wisdom, knowledge, and acceptance.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, April 3, 2008 11:52 AM CDT
Hello,
Everything is about the same at our house! Everyone is able to fuss! That's a blessing! HA!
I'm down to one syringe of Heparin! They have now recalled B. Braun Heparin as well as Baxter! They owned both companies and the raw heparin is imported from China! They had chemically altered Condroitin Sulfate to Oversulfated condroitin sulfate!! This does not occur naturally! By the way, did you know that heparin is made from the mucus that coats the lining of pigs intestines? EEEEEEEEWWWWWW! Gross!
Anyway, there have been 19 to 21 deaths and over 400 reactions when the patients received the heparin! This is horrible! How on earth could this happen? I'm just ready to explode! Here I've tried everything under the sun to keep my baby alive and depend on the faithfulness of good healthy products and I could have easily killed him! Awful! Horrible!
We go for transfusions tomorrow! I pray they have good heparin and no reactions...
Pray for all the children and their families.
Announcement on the Ride!
Benefit Motorcycle Ride
CMA is having their 2nd Annual Benefit Ride for Nicholas!
Kimberly
k13c@yahoo.com
Registration begins at 11 am with departure at 12 noon. Ride is by donation only and will be approximately 95 miles with several stops and door prizes given at each stop. The ride will end in Coeburn where the family of Nicholas will be hosting a hot dog dinner as a thank you to all of the riders. All proceeds will go to medical expenses and treatment for Nicholas, who has FANCONI ANEMIA. The ride is sponsored by Friends of Nicholas Boggs. Rain date is April 27th.
The Revelators Website
Hot Dogs at 4 pm! Volunteers needed!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, April 2, 2008 12:41 AM CDT
Hello,
Do you like the slideshow? Spencer had picture day at school and when he came home I suggested that I take some of them together! We had to get Nicholas dressed up and he has outgrown everything! I couldn't believe it! He has gained weight though! I think they both look so cute!
Also, the black cat is Baby Black Girl and we will have more kittens shortly! Lucky, the one in my magnolia tree is the one I carried to work with me and he is just the nosest little thing! I've also found out he is my attack cat! He actually attacked the dogs! It was hilarious!
Nicholas and Spencer ran back in the house after the photo session to change clothes. When I came into the house, Nicholas was flat on the floor and breathing so hard it scared me! He had run a short distance and I can definitely tell a huge difference in him!
Nicholas was thrilled to be outside for a little while! It was finally warm enough but didn't last long as it was too windy to stay out! He thought he could talk Barb into taking him outside and fussed and fussed at her! Barb gets so tickled at him! He can come up with the funniest things! He informed her that "My mom will have a girl to girl talk with you and she will tell you that I can go outside!" HA!! He keeps her is stitches!
Keep praying! Too many children with too many illnesses! I had the worst feeling this morning. Keep us in your prayers. I know God has all power and I'm so little.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, April 1, 2008 12:24 AM CDT
Hello,
Nicholas was a little congested yesterday evening but did ok in school making several hundreds and a ninety-three! I'm sure his HGB is falling but he seems to be ok for the most part! I'm sure he will not be looking forward to math homework this evening! It kills me to make him do his homework but he does fine after he realizes he has to do it! He actually does wonderful! I'm so proud of my babies! I just wish I could capture every sweet second! He does this little wink when he is pulling a prank on Spencer that is just precious! I'm going to try to capture it with his sparkling eyes in all their glory! It just melts the heart!
Spencer is doing great and entering the coal fair. I should have taken photos of his project while he was doing it but forgot too! I can't wait until its complete! I'll be sure to take some later! Its really cool! Can't tell anymore right now but I hope he wins something! He went as Walter the Baker for Book Character day and he was just the cutest! 
I think he is just so precious! Nicholas' teacher went as Walter's wife? or helper? and actually baked pretzels for them to put in their baskets! I wish I had one of her too! I'm sure her costume was great! She made the boys the chef hats! They loved them! Spencer had spring pictures today and he had to put on cologne this morning! I'm sure he was a dude! So precious and innocent! I sure wish they could stay that way!
Continue praying for our families, for the children in bmts, treatments, and tranfusions. Pray for the Moms and Dads that are going through these trials that they will have the strength to face the battles and win.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, March 31, 2008 7:52 AM CDT
Hello,
Who was the 200,000 visitor????????? I was shocked to see that it was way over that this morning! If you were, email me!
Nicholas' counts were...platelets were 4,000, hemaglobin was 10.1, and anc was 1221! I'm thankful that his marrow responded and begin fighting the cold and mouth sore! We will not go up on the medicine at this moment. I know in my heart his anc(absolute neuptrophil count, his ability to fight off infection) will drop back down and continue to drop. I pray with all my heart for a miracle and no, I haven't lost hope yet! I just have to face reality though and know what is going to happen if we do not get our miracle. Only God knows the time and place and the circumstances and we will pray for HIS will to be done. Accepting HIS will is the key. There is so much going on in our families that we are all battling. If its not one thing.....its another! Our family really needs your prayers in every way! I know God's grace is sufficient.
I just realized I was off on Thurs and Fri last week. Our nurse went to the hospital to deliver her baby on Thur and Fri we went for platelets. He didn't have any hives and we considered it a good day! Sissy Bear and Spencer went with us and I surprised them with a visit to a fossil site and museum! It was wonderful! I guess the visit was bittersweet! Nicholas was so tired after walking up 20 steps and just had to sit down. He was so pale afterwards. He refused the elevator going up but not coming down. We went outside to the dig site and he was too tired stand! He was standing with his legs paced apart in order to stand! I guess it made me realize just how weak he really is! He runs and plays but in spurts not for any length of time so its not as noticable. I am definitely going to have to have a stroller of some type for any lengthy trips.
Praying for all the children getting bmts, treatments, or transfusions. Pray for the families.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, March 26, 2008 6:55 AM CDT
Hello,
Nicholas went full force yesterday and was extrememly tired last night! He has a mouth sore and I know it really hurts. He just showed me and doesn't ever complain. He is such a trooper. Spencer spent the night with Mamaw and Papaw and it was just too quite in the house! I didn't like it at all! I told Nicholas that I sure missed him and Nicholas said, "Already?" HA!
I must be getting overly cautious about Nicholas because I kept telling them to be easy last night! Spencer had missed his brother evidently and just kept pestering him and couldn't be still if his life depended on it! I just have a feeling that his counts are falling much sooner than we want. I guess we will find out Fri.
Keep praying for us. Pray for all the children getting bmts, treatments, and/or transfusions.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, March 25, 2008 7:35 AM CDT
Hello,
We all had a wonderful Easter....coloring eggs, eating with family, fellowship, hiding eggs, and watching Spencer hop around showing Nicholas where they were hidden because he just couldn't stand it! It was so funny! He really enjoyed hiding but Nicholas didn't like it one bit when Spencer would find more than he did! "Why does he always have to have a contest?" Then, Spencer would get hurt and dump all his eggs into Nicholas' basket! Oh the joys of hiding eggs!
I took Spencer to get his teeth cleaned yesterday and we went to eat before the appt! I thought I locked the blazer but must have clicked on the wrong button! Someone just helped theirselves to the Gamboy, headphones, and about 4 games, Spencer was just about to cry! I felt so sorry for him! I'm so aggravated! He said he would just have to put it on his list for Christmas! My camera wasn't taken so it had to be someone that knew what was in the Nintendo backpack! Bless Spencer's heart, he had a rough day! They put a sealer on his molars and he was such a trooper! His jaws were really tired and he has a gag reflex anyway! They had a time getting them finished. The instrument would gag him and he would pull their hands away! That would cause them to have to start all over! I think they were glad when we left! HA!
Nicholas asked me to tell him what all they did to Spencer. Spencer said "It was wide!" Instead of wild, he said wide because he had to hold his mouth open so wide! Too funny!
I just do not know how many more long days I can handle! I was totally exhausted last night! Mentally and physically! I just pray for strength and courage! I or should I say we really could use your prayers!
Pray for all the children in treatments, bmt, or transfusions.
Miracles, Blessings, and Bear Hugs,
Donna
Friday, March 21, 2008 9:13 AM CDT
Hello,
We did get a platelet and a packed red cell transfusion yesterday. His platelets were down to 2,000, hbg was 6.8, and his anc was 870...yes, that is the lowest his platelets have ever been. He had petechia on his tummy, face, ears, fingers, legs, ......everywhere, as well as bruises! I had a gut feeling that he would be lower just due to the low grade temp while he was sick. I'm still reeling! He didn't look as pale and I was surprised that he was so low in hemoglobin too. Big Bummer!
Nicholas overheard the dr say something about sputem culture and went ballistic! Crying his heart out and I refused the test! He told Dad that I saved him yesterday! Broke my heart and I just couldn't put him through it! So the dr wants to give him his Tobi meds twice a day for a week as well. I listened to his lungs last night and one sounded really junky! Pray that he gets over this and doesn't get pneumonia.
Yesterday as we were coming home, Nicholas asked, "Mom, did you know that God is in here with us?" I answered, "Yes!" and asked him how he knew and he said, "The clock! God is telling us the time!" I thought that was so cute!
1 cross plus 3 nails equals 4 given! I thank God for sacrificing His Son for all of us! I thank God he is in the car with us! If God is in your heart, you are carrying Him wherever you go! Thank you Lord for forgiveness, redemption, and a chance to live forever in Heaven together. One big happy family reunion one of these days. As Papaw said, "Get use to it, I'm on my way out of here!" Goodbye wicked world I'm leaving you now! Why does loosing someone so dear to our hearts hurt so badly? Why can't we be happy that someone is out of this world and in perfect peace with God? Out of pain and care free? Not scared and resting in the arms of Jesus? Not needing transfusions weekly and romping, running, flying through Heaven?
Soak up every second of your loved ones and let them know you love them! Be sure to take God with you wherever you go...
Miracles, Blessings, and Bear Hugs, and don't forget to take your deodorant to church with you! I guess the devil doesn't like clean smelling souls!
Donna
Wednesday, March 19, 2008 12:27 AM CDT
Hello,
Nicholas is still feeling ok! He did run a low grade temp yesterday and a little one today but seems ok. He told Barb that he felt much better after she beat him! He says she beats him harder mom or dad does! She said he didn't complain! HA! She must have beat the cold out of him! Not real beating! Percussion kind to keep him from getting pneumonia! His lungs sounded worse but now sounds much better! I think we have escaped pneumonia!
Our neighbor came down and when she saw Spencer she said, "I think you have grown a foot since I saw you last!" Spencer immediately lifted up his foot and asked, "One of these?" I burst out laughing! He is so funny! Oh, that boy! Rotten to the core! Sissy Bear had cooked her some chicken and I ended up making the dumplings for her! She called me later and said they were all rubbing their tummies and that they were delicious!
Papaw had to have some before she took them of course! He had another rough night and went back to the dr today. I'm not sure what is going on but I think it is thyroid or pancreas! If I keep guessing, I'm bound to hit it sometime! I haven't heard back from him today and he was suppose to call me! I hope they find out soon what his problem is. It could also be stress!
Remember us tomorrow as we go to transfusions! Pray for all the ones in bmt, treatments, or transfusions. Pray for the families. Be sure to post your prayer requests on the message board above!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, March 18, 2008 12:35 AM CDT
Hello,
Ok, a nudge from Holly and I'm updating! HA! Nicholas is feeling much better and where on earth all that junk came from I'll never know! Just a low grade temp and some wheezing today but overall the runny nose has stopped! I'm so happy he is lots better! We will go Thurs for his transfusions! I think the drs are taking half a day off on Fri! I will be totally confused all weekend by going early to transfusion. It will be a long day as he will probably get both platelets and red cells. Start praying!
Spencer was in fine form last night jabbering every breath telling Nicholas about him pretending to be a baseball player for the Cincy Reds! He was going full blast and acting it out as he went! It was so funny! Nicholas was laughing so hard I thought he was going to get sick! He said, "I think something is wrong with my Bub! He can't stop talking!" I told him I thought he had had chocolate! Nicholas laughed and said, "Yes, 10 lbs of it!" Sure wish I had my video going on that one and hidden from view!!
Nicholas said he wasn't praying for Chad last night and I asked him if that was Christian or not! He laughed and said, "I'm teasing!" Then, we said our prayers....We asked God to bless......Chad, so he can take care of Breanne!, her parents, Ms A(Alessandra), Ms S(Shey), Ms S no 2(he said this was Sissy Bear), Daddy Bear, Aunt Ova, Mamaw and Papaw, Bub, Dad, and me, Kenny, Ms. Chris H., Mamaw Boggs, and I asked him who else?...and he said, Oh, Francis, Joel Lee, Trossie, Wes, Sheena, Steph, Brad, Braden, Eric, Kara, anyone else?....everybody! Amen! I'm sure I left someone out! Chalk it up to sleep deprivation! If you want him to pray for you, email me!
Papaw is feeling a little better as well! Hopefully, he will be able to get out of the house and get some fresh air! That will help! Please keep praying for them and all the ones in transplant, treatments, or transfusions.
Happy Be-lated St. Patrick's Day! Happy Easter! Happy Secretary's Day, Happy Mother's Day! There! Now, I'm ahead!:)
Miracles, Blessings, and Bear Hugs,
Donna
Monday, March 17, 2008 8:16 AM CDT
Hello,
Nicholas woke up Fri feeling bad and it didn't get any better! He just wasn't happy with anything anyone did! By that evening, his little nose began pouring and he developed a terrible cold. He did get his platelets on Fri and since he had been fighting a sore throat and was acting droopy over there, they gave him a dose of antibiotics before his platelets. He did well through his transfusions and didn't have any hives this time! His platelets were 5k, HGB was 8.7, and his ANC was 1080! I think his ANC was up because of him fighting this cold and not a response to the G-CSF! He is still getting his G every day! We can go a little higher on the dose if it begins to fall again. I'm just surprised that it went back up but I have a feeling I'm right as to why! Saturday, he actually went back to bed during the day at one point! He looks real pale and I dread this week as his HGB drops. He had a lot of homework to do and I made him do some on Sat. He was furious but he chose to do his math! After he realized he had to do it, he was fine! Sunday, he felt much better! He had two rough nights and so did Mom! So far Spencer hasn't developed a cold or anything but a stuffy nose! He is usually the one that gives us a sore throat! Hopefully, he has developed some immunity to all the bugs at school.
Nicholas was able to give Breann her little Valentine ring! She was shocked! He was so smitten! Then, he sent Chad (her husband!!!) a snake in the ring box! We were saying our prayers the other night and I asked him who he wanted God to bless. He was naming a few of Breann's family......but when it came to Chad, he said, "CHAD!...Uh!...." I suggested he pray for Chad, so he could take care of Breann and he said, "Uh, I'll get back to you on that one!" Toooo funny. He would not pray for Chad! It was hilarious!
Keep praying for our special precious gifts from God! Pray for our family, Mamaw, and Papaw, they aren't doing well at the moment. Pray for strength and courage. Pray for the Baker family as they have just lost a son, father, and friend. Pray for Kayla, she just lost her job. God does know what we need when we need it! Pray for the ones in transplant, treatments, and transfusions!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, March 13, 2008 6:48 AM CDT
Hello,
Nicholas is much better no complaints of his throat being sore. I'm getting worse and feel like I'm getting a sinus infection. Spencer and Dad are just fine so far! Spencer had Cub Scouts yesterday evening and they played outside all evening. It was a little chilly and I think it made my throat worse! It was beautiful though and they really enjoyed being outside.
Nicholas was very tired last night and went to sleep really quick. He was just full of himself yesterday! I love it when he is fiesty and sassy! He seems to be ok, I don't think he will have to have red cells tomorrow but will need platelets unless they have risen to 139k! Nicholas' magic number! Bless his little heart! He keeps seeing how long it will be until Camp Sunshine, counting the months and smiling from ear to ear! Oh, last year's memories keep haunting me! Pray this trip is much better! We've got 5 months to pray!
I had about 10 years scared off my life this morning! I came around a curve and there was a dark colored dog in the middle of the road! I just about flipped the blazer over trying to miss it! I hurt my hand and jerked my neck in the process but missed the dog! I don't know how but I did! Whew! That was a close one! One lucky dog!
Keep praying for the children in transplant, treatments, or transfusion dependent. Pray for Erin Paige's family as she passed away Tue. Pray for my mom and dad.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, March 11, 2008 10:19 AM CDT
Hello,
We are all on the mend! Nicholas said his throat hurt a little bit! Mine is still sore but I think its some better! Just hoping that Nicholas doesn't get any worse nor Spencer getting it! Sissy Bear is still sick and they are checking her for kidney stones! Please pray for her!
Nicholas asked me which baby I loved the best! He was jealous of Spencer sitting in my lap while he was in school! It was too funny! He made several hundreds last night in school but missed a couple of questions in Social Studies! I do not know how he remembers all that he does! I've noticed him forgetting some things last week and he was just transfused! Just a few little things nothing major! I'm just so thankful that he does as well as he does! He is a precious pup that's for sure!
Spencer was so pleased with himself last night playing the Game Boy because he went to new levels in one of the games! Nicholas said, "Mom, HE'S my HERO!" So sweet! And then while we were eating dinner, Nicholas leaned over and kissed Spencer's shoulder! Too precious! Moments that just cannot be captured on paper or video....I guess they are heart memories!
Continue praying for all the ones in transplant, treatments, or transfusions! They all need our prayers! The families and siblings need prayers as well! If you have healthy children or grandchildren, be thankful!
Miracles, Blessings and Bear Hugs,
Donna
Monday, March 10, 2008 8:25 AM CDT
Hello,
Nicholas did get his platelets on Fri with his count being 9k, Hgb was 10.3, and his ANC went up to 900! Thank the Lord! Still under 1000 but didn't drop this time. I think now I know why it went up.....he was complaining that his trach was hurting. I think he has the sore throat! Mine began getting sore last night! I do believe we are getting sick! I'm just so tired and he has been droopy too. Too droopy to just have gotten his tank filled up with red cells. Sissy Bear was sick this weekend too so we haven't seen her at all!
Spencer has been ok, clearing his throat but says it is not sore! He had two birthday parties this weekend and really enjoyed them! Dad took him to one Sat night and I took him to Kassi's on Sunday! They are so sweet and precious! They make me laugh! We brought Nicholas back some cup cakes! He was thrilled! He had his mamaw and papaw all to himself for a while though and that pleased him!
Praying for all the children in transplant, in treatments, or getting support via transfusions like Nicholas. Please pray that he doesn't get any sicker! Yes, I'm still praying for miracles and will continue to do so!
ANNOUNCEMENT:
Christian Motorcycle Association will be having a ride for Nicholas on Sat, April 26th, 11:00 am at the old Walmart parking lot. We will be meeting after the ride for some food and fellowship, hopefully at the Train Depot in Coeburn around 5 pm. I do need some volunteers for food and serving!!! We will need chili, hot dogs and buns, cole slaw, drinks, ice, utensils, etc. Let me know if you can help!
Thanks.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, March 6, 2008 10:39 AM CST
Hello,
Well, the boys received report cards yesterday! Both did excellent, Nicholas with one B the rest A's, Spencer with A s, As, and Ss! They are too smart for their own good! But I do like to brag on my babies! They are so precious.
Nicholas bumped his head yesterday evening but seemed ok! He was worried and wanted to know when the knot would go down! It was a small one and Sissy Bear had put ice on it! I came home to a bright green dish cloth! They had been in the food coloring! Nicholas demanded to know why I liked plain ole white dish cloths! I think he decided to make me some colored ones and yes, Sissy Bear let him! He could get away with anything when she is there! They had also turned the living room into a tunnel! Much to Spencer's delight! I think my living room is now a fort! There is always a tunnel or hide-out of some sort in there! That's fine with me! I love them using their imaginations! and usually add fuel to the fire! Once, we had a fire inside one and I pretended that Spencer stepped in it! They thought that was so funny! Now, they love to pretend. Sweet, sweet memory making fun. They have had everyone in their forts! Papaw with his big long legs sticking out had to be the funniest! That was probably in a tent! Too funny!
Tomorrow is transfusion day. He will get platelets and hopefully, his hgb will stay high for a long time! I can dream can't I? April 13th will be our one year anniversary of getting platelets on a weekly basis! With the exception of being in the hospital in August, we haven't missed one appointment. No wonder I'm exhausted! I cannot believe its been a year! Time sure flies! Its so hard to take any trips with this schedule! I'm dreading the trip to Camp for that reason! If we do get to go, it will have to be a stop in Cincy going and coming! And hopefully, no hospital stays. At least they know him in Maine now, in case we do have to go to the hospital or would need a transfusion while there. 5 months is a long time in one way and a short time in another! Nicholas is so excited and really wants to go. Of course, that's normal for him! He lives for camp. He loves all the attention and all the girls!! HA! Spencer loves it too but seems a little on the shy side! I'm sure he will be thrilled to see Casey again! Casey was so good to him last year! I don't guess I've thanked him properly! THAANKS!
Please remember all the families in transplant, treatments, or transfusions! Be thankful for your child's health! Enjoy every second, every minute of every day with them and let them know you love them!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, March 5, 2008 10:44 AM CST
Hello,
Nicholas was up at the crack of dawn this morning! No, before then! Then, he found out I was still home and he was busted! HA! He did lie back down but did not go to sleep! He loves sneaking out of bed when I'm not there and running around! Then, its thick secretions, mucus plugs, coughing, and hacking for Mom go get cleared out again! He needs his moisture to keep his secretions thin! I explained why I was a mean "Jommit"(his pet name for me!) all over again. I told him that we had to keep his lungs clear so he wouldn't get sick and if we didn't he would get sick and wouldn't be able to fight off the bugs well. He said, "You know I'm not as healthy as I was before!" I think he knows and realizes some things a little too well!
Yes, I've never mentioned his pet names for us...Dad's is Joppit, Spencer's is Jubbie! I told him we were going to call him Jubber! He liked it! No clue where these came from but he has been calling us this for a long long time! Too precious!
He is ok...still going full force but a little subdued..made 5-100s on his test on Monday! He did wonderful! He can sure pull a fast one on his nurse Barb in math! He didn't half try and had to redo his math for me! Mean Jommit again!!! HA!
I do have hair left but you wouldn't believe the nursing drama we've had to go through! I'm really sick and tired of it! I wish we could find another good nurse and be able to keep her for any length of time! This nurse shuffle is getting to me! Just pray that the drama will cease and we can keep just a couple of great ones and settle down into a routine! I never know when one is going to show up or not! Barb is dependable and I thank God for her! I just need one more! I'm worried about getting too many people coming and going and bringing in the flu or something in on Nicholas. I know we cannot keep germs totally away but I can and will be a protective momma bear! This has to stop sometime! Where on earth are the good nurses? Doesn't professionalism exist anymore? Ethics? Morals? Goodness gracious!
Praying for a smooth transission from hospitals to homes for all the transplant patients. Wonderful news when they are able to get out of the hospital! Pray for all the ones in treatments or transfusions as well. Pray for us.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, March 3, 2008 10:10 AM CST
Hello,
Friday was a long day but a wonderful one! No hives! His HGB was 6.5! Yes, way low! Platelets were 11k and his ANC is 800! Too low for him to be on G-CSF every day! I'm bummed about that of course! Nicholas' lips were so pale that even Spencer noticed how red they were on Saturday! He was bouncing off the walls and just hopping like a rabbit everywhere he went! He laughed so much!! There was singing all day long. There was playing all day long! There was one tired happy momma too!
Spencer is doing great so far! His troop went on a hike yesterday and he loved it! Nicholas was furious that he couldn't go nor get outside! He quarrelled and fussed all evening! I tried to explain everything all over again and told him I had to keep him healthy! He understands but wants Spring to arrive really fast! I let the cat in to play with him and that cheered him up a little! He loves that cat! It's really hard on him to stay in all the time! He doesn't complain much but I guess it just got to him when Spencer went outside! Please pray for him. If his ANC keep dropping, I'm not sure what he will be able to do! He may not even get to play with the cat! I'm really worried. His ANC is his ability to fight off infection. Below 1000 isn't good! Under 500 is "ISOLATION!"
Praying for all the ones in transplant, on treatments or transfusions!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, February 28, 2008 11:15 AM CST
Hello,
We are gearing up for tomorrow's transfusion day! It will be a loooonnnngggg day because he will have to have red cells as well. He seems to be ok for the most part though. I've noticed a little difference but nothing major. His little body is just use to the low counts and not relaying any visible signs of distress to me! Except for a huge bruise that won't go away, that is the only sign of low platelets so far! He coughed quite a bit last night though.
They are both rotten to the core! Spencer was in a big way last night and laughing over everything. He just about knows all the bones in the body! Their health teacher is teaching them and he was telling us something funny last night! He kept on laughing and got all of us laughing! When he has an audience, he will show himself! He had Nicholas laughing all day and he laughed so hard that he ended up sick! I had to make him stop so Nicholas could gain control! They are so precious!
Praying for all the children in treatment centers or transplants, or transfusion dependent! I know the toil it takes on the families, pray for strength and courage.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, February 26, 2008 9:38 AM CST
Hello,
Nicholas is doing ok! He had some trouble in school with reading comprehension but then answered questions on a test from a month ago and made a hundred! He is amazing! I know I keep blowing my own horn but he is! He is so precious and sweet! There is just a total sweet, loving, angelically spirit about him! He was singing last night about wanting to go to Heaven. How on earth do I keep a straight face? Let along a happy one????? Then, he asks me, "How will I get to Heaven?" I told him that God would send an angel for him. "What will my angel be, a female or male?" Of course, I told him it would be a beautiful one! He said, "I know that God is white!" Holding my breath I asked how he knew. He said, "I saw Him on the video, "The Littlest Angel! He is a bright white light!" Whew! He is singing this and being silly while he is doing it! He isn't sad or crying this time, just talking like it was common every day conversations! Yes, I have to answer him when he asks questions so pray that I have the right answers for him.
There isn't a day that goes by that he doesn't mention Camp Sunshine! He told me the other night that he was sad. I asked him why and he said, "Because Julia, Mary, and Megan wasn't there last year! When will they be there? Girls! You had better get those applications in early! Then last night, he was thinking of ways that he was going to surprise Joel!!!! He LOVES Camp Sunshine! He loves his girls! Mike, he even mentioned you too! These are all volunteers at Camp! He loves them! Go Camp Sunshine! He asks every day, "How much longer to Camp?" See? He cannot stay down for long and neither can we! He keeps everyone smiling or crying one!!!!
Praying for all in transplant, transfusions, or treatments of some type!
Miracles, Blessings, and Bear Hugs,
Don't forget to take your deodorant to church! HA!
Donna
Monday, February 25, 2008 11:01 AM CST
Hello,
Nicholas just received platelets on Fri! Our nurse had the flu and we definitely do not want to catch the flu! Goodness gracious! Nicholas' hgb was 8 but he is so pale now. He will be really low by this Fri and will have to have both I'm sure. His ANC was 896 and platelet count was 9k. He is on G-CSF and his ANC is still below 1k....for three weeks in a row now! That is not the best for him but he can still fight some though.
We celebrated Mamaw's 79th birthday yesterday! It was a wonderful dinner! We had planned for Braden's 1st as well but he had the pink eye! We will have his next weekend! It will be so much fun! He is so precious! They sent Mamaw for a cancer scan today. I'm sure she is nervous and they won't know the results until she goes back to the dr. She had a half of her lung removed 16 years ago! Hopefully, this is just a precaution and they haven't found anything to be concerned about. She is so confused she can't really tell me what the dr said! She functions pretty good to be 79 though! I hope I can be as fiesty as she is when I'm her age! She is the sweetest Mom on earth! We love our Mamaw! Nicholas sang "You are my sunshine" to her the other morning and she just burst into tears! She is so precious. Happy Birthday tomorrow Mamaw! We love you!
I think Spencer gets the Funny Moment award this weekend. He was getting ready for church yesterday and just had to have his "high performace" deodorant on and was asking what that meant! I told him it meant that it would last through some extreme exercises! He asked, "Will it last through church?" I told him, "I think so unless you are going to do some major, heavy duty Praising the Lord!" If that wasn't funny enough, he asked, "Do you think I should take it with me?" HA! That's my sunshine for you! Yes, I told everyone at church what he said! So precious!
Praying for all the ones in transplant, treatment, or trials! Pray for the families......too many to begin naming. Pray for Mamaw and for Papaw, he has had to really change his ways of thinking and doing! He gave her the most beautiful birthday card! WAAAAAh!
Don't for your deodorant next Sunday!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, February 20, 2008 10:33 AM CST
Hello,
Another crazy day in the bearz household! Nothing is changed healthwise, which is a wonderful thing! Nicholas isn't running a low grade temp anymore. He is just as rotten as usual! He and Spencer played and played last night! They pretend all the time and take turns telling the other one what to say! It is hilarious!
I need some ideas for fundraisers...anyone willing to tackle a project with me? I'm continually searching! Always on the lookout, always keep my eyes and ears open....and keep on brainstorming and yes, that could be the problem, I don't have a brain to brainstorm with! I know I have continually begged, badgered, pleaded, asked nicely for help in the past but it doesn't seem to be enough. I guess I'm desperate for a cure, a miracle, and want it right now! Patience is a virtue, one in which I do not possess! Neither does Nicholas! HA! I told him I wish I could buy some for both of us! He thinks that is funny! If you have any ideas, please let me know! I don't know why I keep saying this...no one ever emails me their ideas! Hmmmm, just in case....email me! If you want to just donate to FARF, mail me a check and we will appreciate it so much!
I feel so helpless most of the time! I wish we had a central place....for all data to be shared by all doctors, all donations of cells to be easily sent to others for testing, not the competition between facilities that I'm seeing. I think for the good of all families, there definitely needs to be lots of changes! For the sake of an orphan disease but mostly for a cure, we need a central location and cooperation from all facilities. I wish I was in a lab doing the testing and research myself! I can't but I can pray for someone somewhere to find A CURE!!!!!!
Praying for Darla, she has liver cancer and in surgery today. Praying for all the ones in transplant or treatment!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, February 19, 2008 7:50 AM CST
Hello,
Nicholas did well in school yesterday! Last week, his nurse told him that she wasn't taking any flack if he didn't do well in school....it hurt his feeling to high heavens! He told me..."She said she'd have a flack if I didn't do well in school!" I couldn't understand what on earth he was saying then I rem. what she had told me! I asked him what on earth she meant and he said, "She'd have a fit!" I couldn't help but laugh! He didn't think it was funny at all! He was furious! After it was all over with, I told him I'd speak with her! He ended up telling her that she hurt his feelings. He was a little emotional last week and some on Friday too. I can see some mood swings...could that possibly be due to low HGB? Low oxygen? Hmmmmmm, interesting!
Last night, Nicholas was looking out the back door and it was clear, moon shining bright, stars out and he was talking. I asked him what he was saying. He said, "I was talking to God! I told Him if he was busy talking to someone else, then I understood." Yes, it broke my heart. Later, he was doing it again. He was looking up to the stars and said, "I wish I could obey God's ever commandment." Then, he turned to me and asked if I thought he could. Of course, I told him yes he could and that we all could if we wanted to! I think I should have given him his telescope and let him look at the moon up close! I'll try to do that tonight!
Sissy Bear gave them a little science lab and last night they made colored crystals and watched them grow! He said he was going to be a scientist, until Barb told him he needed to learn math! That burst his bubble! He did well on math the other night though! I think he is finally "getting" mixed fractions! It takes such a long time for him to process the steps but he can do it! It just takes him a little longer and lots of patience on our parts! He isn't doing as well on reading comprehension on his stories either. I can tell a difference there as well. I said I wasn't going to get too deep in these updates but I guess I can't help but reveal some of my thoughts or observations! I'm just wondering.....how big a biscuit a barrel of flour would make! I told you I was thinking deep this morning! HA!!HA!!!!! Gotcha! That was Jeff's dad's favorite saying!
Spencer is doing great at the moment! I can see a huge difference in him too! I'm so thankful that we have two wonderfuly little boys! They are so precious! He is such a sweetheart! Of course I'm prejudice! The siblings have such a hard time dealing with everything! We, as parents, have a hard time dealing with a sick child, what on earth do we expect the other children to think or feel. I guess he is dealing with everything the best he can. We all are. God has been good to us and has guided us in all situations. I pray for wisdom, knowledge, courage, and strength for this journey!
I received a call to donate platelets this week, so they must be low! If you can donate, please do so.
Please continue to pray for the children, families, extended families, dr, nurses, and caretakers.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, February 18, 2008 9:17 AM CST
Hello,
Nicolas did get his platelets on Fri without any hives! He seemed to be on the grumpy side all day long though! He was bruised big time...sat down on a video and it bruised his hip and had one on his leg. His platelets were 6k and his HGB was 9.2 with an ANC still below 1000. That makes 3 weeks on the G-CSF and his ANC still below 1000. This is raising a flag to me! I know I worry too much but he is my baby! I do want a miracle and will continue to pray for one up to the last second of course! I will just try to keep everything on a lighter note and not voice my opinions....they aren't gospel anyway! I've decided to keep my thoughts thunderous and my voice quiet! I guess if I start speaking I'll scream! Everyone will ask how he is doing and all I can say is "about the same! and then something about him being rotten!" which makes the conversation on a happier note! No one wants to hear my thunderous opinions! or see my breaking heart. How is he suppose to be when in bone marrow failure? He is continually dropping and not creating any cells. He will continue to drop or use up the cells faster....and when his white cells deteriorate or he cannot make anymore, he will not be able to fight off any infections. I'm not being pessimistic just realistic! I know this definitely isn't a lighter note! HA!
We've had lots of precious, precious moments. Spencer woke up Sunday morning, kissed Nicholas' foot the first thing! Then, served him breakfast in bed much to Nicholas' delight! It was just so precious! I just love to hear them playing and Nicholas has been singing all weekend. I love it! Sweet, sweet music to our ears! Spencer decided to chime in as well, except they weren't singing the same song! It was so funny! They are such a hoot!
Keep praying for all the children in transplant or on treatments of some kind. They are continually on my heart.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, February 14, 2008 9:22 AM CST
Hello,
Nicholas did much better with his school work yesterday! Ms Grimes was thrilled with him! I think he was a bit hurt on Monday! He has his feelings on top of his shoulder and was aggravated! I think with a new attitude, he did much better! HA! Maybe I can learn a lesson here! Yes, I need a new attitude!
Tomorrow is transfusion day...just platelets hopefully! I have a feeling they are going to be low. Of course I'm praying for them to be 139k! No clue where he got that number! If you are wondering what on earth I'm talking about, read the journal history.
We now have a FA facebook! There are several out there which I didn't know about! I the more we have the better off we are.....more awareness. I heard another child in our area has just been dx with FA! Praying for their rollercoaster ride! Sometimes FAmilies have smooth rides and just a few bumps here and there and sometimes its bumpity bumps all the way! I'm thankful that we have Nicholas and that he is as well as he is. Yes, its a hard row to hoe but at least it is hoeable! His sweet spirit and precious sweet kisses and smiles just make our hearts run over! He and Spencer were so cute together last night! Spencer is a pure little clown and keeps Nicholas laughing and giggling! Yes, he forgets and gets a little too rough and keeps me on edge especially from Wed to Fri but overall, he is precious with Nicholas too. He made Nicholas mad last night by hugging him a little too rough while I was flushing his PICC line! Yes, there was drama but we survived it! I think! See why I need strength and courage?????? Keep praying!
Praying for all the ones in transplant, some on their third bmt and here I am complaining! Praying for the families as I know how tired you get while inpatient.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, February 13, 2008 8:01 AM CST
Hello,
I would like to thank the following for donating in the Giving Challenge in honor of Nicholas: one anonymous, Casey, Heather, Henry, Joel, Kathy, Kim, Lisa, Lynn, Mary, Maureen, Michelle, and Sharon. If you donated in our honor and your name isn't on here, please let me know. Thank you for the donations.
Nicholas is doing ok except for a low grade temp off and on. He weaseled out of some homework and got in trouble! I called yesterday and told him he had better study and he said, "I won't let you down Mom!" Broke my heart! He knows how to get away with everything! He did well though and we practiced math last night! He can get it but it takes many, many repeated sessions for him to process it! We have adjusted his IEP to allow him to NOT take the math part of the sol but gather his work through out the year and submit it. I think that would much less stressful on him. I do think he can do the work but it just takes a long time for him to do it! He may not be able to do today what he did yesterday. He definitely cannot remember how to do some things....division, adding mixed fractions.....he is having major problems in this area. Its not worth him crying over it. Its not worth him getting so upset because he cannot remember and he beats himself up if he cannot do it! I do not want him upset especially when he is low on platelets. I do not want him to have an aneurysm! I think he does excellent for his HGB to be 7 or less sometimes! I really do not know how he does as well as he does! He is a trooper!
Spencer is doing much better in school. I visited the other day and he is now sitting beside of a little blonde headed girl! Hmmmm, I wonder if that is the reason? He loves to show out though! We'll see how this sitting arrangement goes! He was bragging on her the other day! His heart still belongs to Elisabeth though! HA!
Praying for all the ones in transplant, Joel, Justin, Lindsey, Haylee, Anthony, and all the rest that is taking some type of treatment or protocal! Too many that is for sure. Like I told Nicholas..."We'll keep praying for our miracle!"
Miracles, Blessings, and Bear Hugs,
Donna
Monday, February 11, 2008 8:11 AM CST
Hello,
Nicholas did get platelets and red cells on Fri. His counts were: plts 5k, hgb 6.7, and his anc was 989, still under 1000 with GCSF every day for two weeks. He has been running a low grade temp at times. He seems ok though. He is such a sweetie. Precious!
Thursday night, I was changing his dressing on his PICC line. He saw the tegaderm and knows I send them to Will. He asked about Will and if he had a PICC line. I told him Will was doing great and didn't need a PICC line now. He hung his head, puckered up, and began crying. "Why is God not healing me?" "Why am I not getting better?" It took every ounce of my strength not to cry as I told him that I didn't know. I explained that God had a plan for us all. And if God didn't heal him, then we would get whatever he needs to support his counts and make him feel better and get them as many times as we needed to. I had to leave the room and go cry, then go back to him. I thought everything was ok and then later he said, "I want my platelet count to be 139,000!" I told him I did too! He continued to ask questions and I did the best I could. He was laughing by the time the conversation ended! I told him if I went to Heaven before him, that I would be waiting on him! He said, "That depends!" For a few seconds...I thought he was going to say.."If you go to heaven!" but he continued...."On when you die!" I took a deep breath and said, "If you go to heaven before I do, then you better be waiting on me!" He thought that was funny and said, "I will Mom! but that depends on when I die!" He didn't say anything else the rest of the weekend until last night! He wasn't crying or sad but asked me what that woman's name was that had the scarf on her head at Camp...it was Maria... He said, "I really miss her!" I told him I did too! He asked me a couple of other questions but I cannot remember what they were now! It was something to do with someone else going to heaven. I've been emotionally swamped as you can tell! I can talk to him when he ask questions, but I cannot take him puckering up and crying. It broke my heart into a million pieces. Please pray for all of us. We need strength and courage. One day at a time, Sweet Jesus! That is all we are doing..one day at a time. Blessed be the name of the LORD! I knew something was going to happen, I had been praying continually for strenth and courage....and still am. It's not over with yet! Grace too, Lord!
As I was laying with him last night, I asked him if he knew he was my special gift from God! He said, "Yes, you've told me a million hundred times!" HA! Spencer just smiles when I tell him that! He's my sunshine! Sissy Bear says she doesn't know how we were given two sweet ones!!!
The boys made their Dad a happy birthday card this weekend and we had a wonderful dinner yesterday. It was delicious! Happy Birthday Cathy and Trossie, they share their birthdays! Cathy is Jeff's twin sister! Trossie is my sister-in-law. We have been cooking for Mom and Dad every Sunday. Mom is getting a little forgetful. I don't think she is eating correctly. I think she is forgetting to eat. I know she eats well on Sundays though! Pray for them as well. I cannot check on her like I'd like to but between all of us, maybe we can keep her mobile and healthy.
Praying for all the ones in tranplant or treatments.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, February 7, 2008 11:59 AM CST
Hello,
Another day in our little world, another nurse being trained. I think Amanda is number 8! No 8 in a little over one year! I'm just amazed! Home health or private duty nursing has a huge shortage of nurses! These small companies just cannot pay the same as the larger hospitals in our area nor the benenfits! State sets the rate for reimbursements and I don't think it is enough. We need top rate nurses in our homes! It's hard enough to leave your baby in someone else's care let along someone that will only be there until they find a better job elsewhere. It's a total rollercoaster ride! It upsets everyone in the household. Spencer came in the other day when he met No. 7 and couldn't believe that she wasn't going to work! He met Amanda this morning and it helps for him to meet the new nurse as well. They give him extra attention too and he loves it, of course! Yes, it effects him. He worries about Nicholas without putting it into words. I know he does. He listens to every word we say and knows everything we do for him. He loves to help out with him but Nicholas doesn't like it at all! Especially, when Spencer wants to suction him! I have to create an aversion and have Spencer do something else to help me so Nicholas won't go into orbit! HA! Never a dull moment in our house that is for sure!
Nicholas will get transfused tomorrow with both platelets and red cells. His feet were so cold yesterday evening and he was very pale. He was exhausted as well. He made a couple of 100s and a 87 on his tests. I think he did wonderful! I'm sure we couldn't cope with a Hgb being below 7 and do half as good! He is a true trooper!
Please remember all the FAmilies going through transplant, Justin, Anthony, Haylee, Lindsay, and others that I don't know about. The ones that are going through continuous treatments without a hope of a cure like Nicholas. Pray for strength, grace, and courage.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, February 6, 2008 8:30 AM CST
Hello,
The excitement is still in the air!!! Thanks Carol for finding the interview with Nicholas and for sending it to me! He looks so sweet with his little toes showing!! He is so rotten and yes, he knows it! The joy he brings to everyone that meets him is directly from above! A true God-send! If there was just a way to bottle all that love up and anoint us all with it! Ha! You know we all have the opportunity to have that same exact love. Jesus' blood was shed for us all.....and we can all be anointed in His love daily, if we want it! As long as there is breath in our body, there is hope for salvation for our soul. I know this has been preached for years but why on earth are we so hard headed? Stubborn? Reject the love of God? It's free! God gives us a choice......our own freewill to choose, that is how much He loves us. Oh, the power in one drop of blood! I have seen the effects of a blood transfusion bringing "new life" into Nicholas but the effect of one drop of blood shed for us? BEYOND comprehension! It saves us, protects, comforts, heals, feeds, clothes, restores faith, joy, love, peace, happiness, and gives us a chance to live forever in perfect peace and harmony! Wow, the power in one drop of blood!
Nicholas was very tired last night, saying, "I'm exhausted Mom!" He is very pale but will get red cells and his "new life" will be restored. I know we have begged, pleaded, prayed for a miracle and my miracle would be complete healing. God's grace has been sufficient and His plans are far above mine. I can't answer WHY but I know WHO! I may never know why but I know WHO holds tomorrow and I know He has a plan. If and when He calls Nicholas home, I know I will see him again. Family reunion in Heaven. I want us all to be together in Heaven!
We did get a new nurse signed up yesterday. Hopefully, she will be a keeper. Pray she is a keeper! Thanks Ms Ellen for the encouragement yesterday. God is so good and I'm so thankful for His blessings. I was thinking this morning about Spencer, he is so precious. He goes through so much and worries about everything. He is my silent hero! He is ever watchful and he was tickled that we signed up another nurse! He is excited about his Dad's birthday coming up this weekend! He wanted to make his cake a construction site just like we did for him! I know that will suite Dad to a "T"!
Praying for miracles for Justin, Haylee, Anthony, Lindsey, and all the rest going through transplant or continuous treatment like Nicholas.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, February 5, 2008 8:20 AM CST
Hello,
I'm still amazed at the contest! It was AWESOME!!! Thank you for all the donations on our behalf. I seem to have offended some with my crazy slogan and I apologize! I love dogs too and wish we could have donated to more than one cause but I love my son so much more. They were all heart wrenching causes in the contest! I wasn't trying to demean any other cause at all! I guess they just didn't know me well. Anyway, we went for the transfusion on Friday, and I told them all about the contest! They thought it was awesome too and called the newspaper. They came and did the interview with us and took photos of Nicholas! He was a pure little ham! I don't know when it will be in the paper. If you are from Johnson City and the article shows up in the paper, please send me the link to it! Thanks! I'm still excited!
We are trying to come up with a FA Awareness Day. What day do you think would be good day? We are considering February 14th......November is bone marrow awareness day....that may be a good month to consider.... goodness there are so many different issues. Adults, children, bone marrow failure, cancer, every system is affected so we are open for suggestions.......let me know yours!
Nicholas has been running a low grade temp all weekend. I'm not sure what is happening. His lungs do not sound well at all. We had to go back to giving him GCSF, which boost his white cells, every day. My thinking is that they are accumulating in the lungs and working hard to clear out infection there. I gave him an extra breathing treatment yesterday. Hopefully, he will begin feeling better soon. He doesn't act sick and I think he is adjusting to the low HGB. He is saying things about not being able to do like he use to and it breaks my heart. He told Spencer, "I know you want me to wrestle with you like I use to but I just can't now!" WWWWAAAAAHHHHHHH!
Well, we are signing up another nurse today! Did I tell you the last one didn't come back? She went home and had a permanent job offer on her answering machine! I know! We always have nursing problems. Please pray that this nurse is the right one for us...pray for patience for us too.
Pray for all the children/adults going through treatments or bmts. Too many!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, January 31, 2008 7:55 AM CST
IT's OVER! Unofficially, we are in 3rd place by one donor! WHHHHOOOOOPPPPPEEEEEEEEEEEEEEEE! Thank you for being a part of our team FARF! We love all of you! WE raised over 65K for FARF and a huge possibility of 50k more!!!!!!!!! Oh, I'm crying!!!!!
Thank you all so much!
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1 hour left to be a part of this contest! Donate, Make a difference!
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Still in 3rd!!!!!! Email all your family and friends and remind them the deadline is only a couple of hours away!!!!!!!!!
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Well, we made it to 1st place for a little while! Now we are back to 3rd!!!! Today is the last day to make a difference...........please go and donate by 3:00 EST!!!!!!!!! PLEASE! Only 6 hours to go and the parade magazine contest for $50,000 is so very close!! Very few donations separate the top 5 charities. Only the top 4 will win $50,000. If you have donated to Fanconi Anemia - THANK YOU!!! If you have not done so yet there are 6 hours left to go. PLEASE consider a simple $10 donation - just click on this link: http://www.networkf orgood.org/ pca/Badge. aspx?BadgeId= 109128
Donations must be made by 3pm eastern time (noon pacific).
To check on the status of the contest, click on this link:
http://www.parade. com//givingchall enge?source= pressAGC
I'm worried that we have dropped to 3rd! IF we are not in the top 4, we will not win the $50,000.........please help us win. I'm really, really begging!!!!!!!!pleading, praying, hoping, panicking, biting nails, eyes riveted on the outcome!
THANKS for donating! It has been fun but I still want to win!
Nicholas is fine! I'm wondering what his HGB is going to be. He did sleep til 8 am this morning for the first time this week! I'm sure he will need platelets tomorrow.
Blessings and Bear Hugs,
Donna
Wednesday, January 30, 2008 7:46 AM CST
61 from 1st!!!!!!!!!!!!!!Go Donate! Go Donate! Yeaaaah! Tell your friends to go donate, tell your mom, brother, sister, uncle, aunt, but not your dog to go donate!
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We are 80!!!!! from 1st!!!!!!
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We are 86!!!!!!!from 1st!!!!!
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WE are 91 from being in 1st place!!!!! HOOOOOOOOOOOORRRRRRRRAAAAAAAAYYYYYYYY!
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Hello,
Please look at the video above! You are our sunshine that is for sure! Let me know what you think of that video!!!!
I think we are in second place......THANKS TO YOU!!!!!
Miracles, Blessings and Bear Hugs,
Donna
Tuesday, January 29, 2008 11:13 AM CST
Hello,
WE are still in 3rd place! And could easily be bumped into 5th place and out of the chance to win 50k! PLEASE help us win this contest! You have to donate through the badge above in order for it to count for the contest! Thanks for all the donations. I'm sure FARF is pleased as well. We have participated in several fundraisers of every type and they are hard work to organize and make successful! This is easy.....just click and donate! Please join TEAM NICHOLAS!
Nicholas sure didn't sleep well and coughed most of the night! I think he slept his best from 3 to 5! Yes, I'm sleepy today! He seemed fine yesterday and had a great day! He laughed and laughed at me yesterday! He is rotten! He did ok during his transfusion on Fri. His platelets were 6k and he was bruised all over his legs. He had a little reaction but not a bad one, sort of itchy. He didn't have to have red cells, his HGB was 9.7 but he has sure been pale this week. He has been a tinge blue around his mouth as well!
Snibbles, thanks for the Williamsburg package! He loved the quill and the comic book as well! We haven't listen to the tapes or cds yet! Thank you so much! I would love to visit but that would take some planning on our part! Maybe one of these days....we can make it happen.
Thanks to all who have donated to FARF so far! It has been a group effort and I know we all have worked so hard to make it happen! We couldn't make it without all of you helping! Thanks from the depths of our hearts.
Praying for all the ones going through transplant, some on their third transplant! Bless their hearts. Praying for healing, cures, miracles through the touch of God's hand.
Blessings and Bear Hugs,
Donna
Thursday, January 24, 2008 8:01 AM CST
ARG! We are still 250 donors behind! I can't believe that! Come on, please go and donate! I've already used my email address and would gladly keep doing it until we are in first place! I WANT first place! I like my slogan, "Don't let 50k go to the dogs, help us win it for our cause!!" We cannot win it without your help! Please try again. If the badge above doesn't work, go to " http://www.parade.com/givingchallenge/
and click on the "# Donation" and it will take you to the badge there....in order for it to count you have to click on the badge and donate that way in order for it to count for us! Make sure its for FANCONI ANEMIA RESEARCH FUND by Peggy P. Thanks! Please don't let 50k go to the dogs!
Now, that is off my chest, I'll update on Nicholas! He is fine! He is ok. He is rotten! He helped train a new nurse yesterday! Yes, he is on the downhill slide as far as platelets go because he has bruises all over his legs! That is an indicator that his tank is full and he is rambunctious! Good thing but can be a bad thing! He will bruise and use up all the platelets! His coloring is pale of course but with a dark look! I'm sure you haven't a clue what I'm talking about unless you have a child with FA! Or a child that is transfusion dependent!
Spencer is out of school again today! The roads were clear but must be bad in other locations! I wonder if this is going to change their Easter break?? He just had to have some attention from the new nurse yesterday! All these changes effects him as well. Bless his little heart! No one thinks about all of this in relation to him. He wanted to know when a new nurse was coming to the house and who it would be! It made me stop and look at the situation from a different angle! He sees everyone migrating toward Nicholas or jumping at every little cough Nicholas makes! I need a vacation or I need to stop thinking!
Keep praying for all the children, siblings, moms and dads, grandparents, aunts and uncles, or anyone that you have that cares. Keep praying for the ones in bmt! Anthony, Haylee, Lindsay, Natalie, Justin, and so many more!
Miracles, Blessings, Bear Hugs, and DONORS!
Donna
Wednesday, January 23, 2008 7:46 AM CST
Hello,
"Don't let 50k go to the dogs, help us win for a great cause!"
Only 9 days left in the contest and we are still in third place! Please get your friends, family, and co-workers to donate $10! We want to win $50,000! Did you donate? Have you copied and pasted it into your myspace yet? Please do so! Please help us! You can only donate with your email one time in order for it to count! Now, go get a friend to donate too. Thanks!
Snow! Snow! Snow! Sleet! Rain! Fog! School is closed today just about in every county around here! It was sleeting really hard when I came into work!
Nicholas is in rare form! He was feeling tremendous yesterday! Pesty, hollering "Hello" every breath when I called, and just being a little imp! I could just see his little eyes sparkling! Yesterday evening, he began drooping! He looked very tired! He was tired because he had been up since 6:30 yesterday morning and didn't go back to sleep! World of difference since his transfusion though! He is just so hyper! I love it! Nurse Barb couldn't believe the difference! This is her first transfusion and she can surely tell the difference! It is amazing to see the transformation. New life! And with it brings sunshine into us! He makes us all laugh! You don't really understand just how bad he was feeling until he gets refueled! Night and Day!
Praying for all the ones in bmt, some on their third transplant! Pray for them an dthe families!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, January 22, 2008 9:29 AM CST
We've dropped to 3rd place! WAAAAH!! WAAAAH!! No, I don't want you to donate another $10, its donors we need! Please get all your friends, family, and co-workers to donate $10! PLEASE pass the links on!
Copy and paste this into an email......
http://www.networkforgood.org/pca/Badge.aspx?badgeId=109128
Copy and paste this into your blogs or websites:
or click on the share tab and copy and paste the links there!
Thanks!
Nicholas did have platelets on Fri, his plts were 9k, his HGB was 6.4 and yes, he had to have red cells as well. He had several hives but they were spread through out the transfusion....which made it rough on the scratcher! HA! He has been singing and singing! Silly! Too awake to sleep! Just had his tank filled up and had to keep going and going I guess! He has aced his tests! He is just so full of himself! I love seeing him this way! He loves his playstation! He does better without thumbs than me with thumbs!!! He laughed and laughed at me! Of course, I'd do anything to hear those laughs too! Fuss and quarrel about him beating me which brought on more laughs and giggles! Precious, precious laughs......
Keep praying for us and pray for new meds, new regimens, more options....pray for all the children that are facing greater challenges!
Please keep clicking on DONATE and tell all your friends!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, January 16, 2008 11:26 AM CST
Hello,
WE are now in 2nd place!!!! Thank you and please keep clicking and encourage all your friends to click as well! If you haven't, please do so by the 31st! That is only 16 days away.......please do it now! We are over 130 donors behind 1st place! Feel free to send a link to this site, or click on the share tab in the badge above and send that link to all your friends! I've put it on myspace as well! I know I'm always asking for donations to FARF, but without research, we will never find a cure! Without research, there will be others to die with this horrible disease!
Right now, we have no hope for Nicholas to make it. He is totally transfusion dependent. He is only being supported via the transfusions. He is in total bone marrow failure. One of these days, there will be something available to at least offer hope to others. We have no hope. We live the best we can with this knowledge every day that there is no hope for Nicholas. I know we have Heavenly hope for him but not earthly hope! I want him healed. I want him well. I want him to run without turning pale around the mouth and totally out of breath. Last night, he and Spencer were trying to play basketball with this little net and ball and Nicholas began breathing really hard. I had to make him rest. He wants to play so badly. He wore himself out and actually crawled into his bedroom and into bed. He was really tired. Why? His hemoglobin is probably about 7.3 right now....and will need red cells on Fri! If he had any bone marrow that was working well, he would not have this problem. I wish he were able to do the gene therapy. He doesn't have enough cells to even harvest. He didn't when we tested him when the Gene Therapy trials were first available. We tried then and he didn't have enough marrow working and it has definitely dwindled since then! One of these days, Gene Therapy will work! How will we know unless we research it further? How will we know? I'm thankful that the bone marrow transplants work! I just wished Nicholas was able to have one. I don't mean to keep playing the same harp but without research we will never find a cure. Yes, I want a cure for my baby! Yes, I'm begging all of you to help me!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, January 15, 2008 7:15 AM CST
Hello,
PLEASE help us get in 1st place! Please click on the "DONATE" button, help us turn $10 into 50k!!!!! Help is just a click away....well someone said it was a lot of clicks!! So, keep clicking! PLEASE! Yes, I'm begging.
Nicholas continues to do ok. He ran a temp yesterday and coughed up some ugly looking junk but seems ok. I know! TMI!! Sorry! Its just the facts! He did get platelets and his hgb was 8 and I know it will be lower this week. He is more pale but seemed to be able to concentrate in school last night! He was having major trouble with Social Studies and we practiced yesterday and he only missed one question out of 22! He made 3 additional 100s!!! He was so tickled! He made two B's on his report card and it made him so mad! He said, "That was not what I was aiming for! Not my TARGET!" I was surprised! He almost cried! Spencer made straight A+'s!! He was so pleased! He is back on track and doing good for the most part! Now, if Mom can get on track! Or should I say get the energy to get off the track before the Train hits! It seems to hit every Friday!
Pray for all the children during transplant and treatment. Pray for the families, siblings, and the drs!
Don't forget to donate!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, January 10, 2008 7:16 AM CST
Hello!
Please click on the "Donate" button above! We are in 5th place! We need to be in the top 4 at least to win the 50k! PLEASE help us win this! Being an orphan disease, we do not get any other funding or interest from any other parties to fund any research or test any drugs, nothing from the government at all. Please, take a few minutes and donate at least $10, you can donate any amount you want but the minimum is $10. This is a group effort and we really need your support. The idea is to get the most donors using this connection. If you cannot see a donate button above, please email me! If you do not want to use a credit card or paypal, email me. If you just want to mail in a donation that is good too, I'm sure it wouldn't be denied!
Nicholas is ok, just very pale. He wasn't too perky during school and couldn't answer many questions in the evening that he could answer in the morning time! That means his Hemoglobin(HGB) is dropping or at least that is what I think it meant!! He is at his best around the 11 o'clock range. He sounded congested to me and around 4 am he coughed up a huge amount. He felt warm to me but his temp was normal.
Guess what Spencer had on his shoulder last night? A hive! I had to call Mary and tell her! Now, she has hives everywhere! I felt so sorry for her! She was continually itching and scratching and it was some better when I saw her! Spencer's ears turned beet red last night and I just knew he was going to have problems during the night but he didn't! Thank God! He had a couple of hives a while back and this is his normal hive time! It has to be a virus or allergies one!
Praying for Justin, Natalie, Haylee, Dylan S, Madelyn, and all the rest that are going through treatments or fighting for their life!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, January 9, 2008 7:12 AM CST
Hello,
It is unusually warm here! It was 68d and that is about 20d higher than normal! We've only had one snow that amounted to anything. Nicholas wants out in the snow and couldn't wait to walk in it when we went for his transfusion! Cowboy boots in the snow and he loved it! No, he didn't get to play in it but did walk in it every chance he got from the door to the vehicle!
Spencer was playing last night and out of the blue asked me what "critical" meant. I told him that when someone was critical they had a 50/50 percent chance of living. He wanted to know what Nicholas' chances of living was! Took me by total surprise! Then he was joking around saying 0/100. I told him I wished! I didn't know what to say for a few minutes. I just shook my head no. He was serious in one way and playing around in another. I feel sure he will be asking more questions. He and his Dad were talking on Sunday and I only heard part of the conversation but it was about Nicholas. I don't know if Dad used the word "critical" or not but if he did it would have been for the future. He definitely heard it from somewhere. We don't broadcast just how sick Nicholas really is but we tell the truth when we are asked. I think he understands more than we are telling him. He told Nicholas one day that he was dying! But didn't mean it to be hurtful, just in general. Broke my heart and made Nicholas mad! Of course, this brought up the conversation and I told them that we would all die one of these days that only God knows when our time will be. The important thing about dying was to be ready to meet Jesus. Nicholas keeps saying "I want to go home!" I ask him where he is and he will say the hospital, then laugh! See why I'm on a rollercoaster!!! And that is just a drop in the bucket! This weekend he said he wanted to go to Heaven! See????? I told him I did too! I'm glad we can talk about going to Heaven and how wonderful it will be! I'm glad we can make it a joyful talk, not something we dread or fear. To be present with the Lord and absent from the body is Heavenly! To be able to rest in the arms of Jesus, who wouldn't want to go to Heaven? I thank God I'm a Christian, for His mercy and grace. Without Him, I am nothing.
We watched a Discovery dvd on pyramids and Nicholas was talking the other night saying, "When they look through my stuff they will find dust, a trach, a mickey button, and a PICC line!" He thought that was funny! I had to laugh with him even though it wasn't funny! I guess he just keeps me in line! Gives me a wake up call....almost daily! I think he is too sharp for his own good or he knows more than we do and has to prepare us! God is using this child in so many ways!
Please pray for all of us, all the children faciandng their Heavenly flight, the siblings, the parents and the extended families. Pray for Mary Bear and Pat as they are both broken out in hives! I do think it is a virus that develops as a cold then the hives start or result as the virus attacks the joints! Just like Spencer! I've seen it in too many people. It happens in the fall and winter.
Keep praying for the parents that have lost thier children as well as the ones that have lost a spouse. Pray for visit/justinbarbier family as he is on his second bmt for FA. and a little girl named Natalie too.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, January 8, 2008 8:14 AM CST
Hello,
Well, school is back in session! Homework took up all of the evening! Homework that Mr Nicholas kept putting off over the holidays took up most of yesterday! He kept whinning, moaning, groaning and I mocked him which sent him into a fit of giggling! I finally told him I didn't feel sorry for him and he was shocked! "You're not sorry for me?" "NO!" Then, he did his work without a word! Tooooo funny! I do believe he was playing for sympathy! Busted!
He seems to be feeling much better "coldwise" but continues to say he is tired. We did get platelets on Fri and he had an immediate reaction to them with hives and a rise in temp but his counts were 5k and he had to have them. Normally, they would have stopped them. He didn't continue with any reactions or we would have had to stop them. God is great in 2008! His hgb was only 9.2 after transfusion last week. I was hoping it would rise more! He is usally 10 or above. I don't think he will need red cells this week either but will probably need them the following week.
Pray for all the children that are dealing with a horrible disease and continued treatments. Pray for the families and siblings as well.
Miracles, Blessings and Bear Hugs,
Donna
Thursday, January 3, 2008 7:30 AM CST
HAPPY NEW YEAR!
God is Great in 2008! I like that slogan much better! HA!
Nicholas is about the same. No major improvement no major setbacks. He was very tired last night and wanted to get in bed early. He didn't get to sleep much earlier though! Spencer was in full force and Nicholas was laughing and giggling at him. Nicholas is still coughing up lots of junk but only first thing in the morning! Where he is coughing so hard he has petechia on his face which in turn is eating up his platlets I'm sure. He did have platelets and red cells last Fri. His platelets were down to 16k and his hgb was 7.5. He has been rotten since his red cells and sang all day long the next day. It was so precious.
Spencer has really enjoyed Mom being home! Hopefully, we have worked through many feelings with numerous melt downs! I have been mentally exhausted but I do believe he is feeling much better. I'm sure this won't be the last time but I'm thankful we can talk things through. He went with us on transfusion day and realized it was a LONG day and boring! He told his Dad he had fun but he isn't going with us this Fri! Must not have been too fun! HA!
Pray for a new diagnosis the other day. I'm sure the family is still reeling! Pray for all the families and the siblings as well. Too much to deal with and most are left out in the whole scheme of things. People don't mean too but it still happens.
Miracles, Blessings, and Bear Hugs,
Dona
Wednesday, December 26, 2007 8:27 AM CST
Merry Christmas! Hoping yours was just the greatest ever! We are well blessed and then some! The boys were spoiled beyond measure as usual! They both have colds and Nicholas is really droopy. I thought for sure we would be in the hospital during Christmas, but his temp didn't spike even though he was chilling some. Thank God! Yesterday he said, "Mom, I shouldn't gave gotten out of bed!" Then he said, "I wish Jesus would come so I could touch him and I'd feel better!" Yes, this broke my heart. The faith of a child! I wish Jesus would come too! He did feel a little better with Santa's visit on Christmas Eve though! Perked up and thoroughly enjoyed it, sang, and mostly just sat in his lap and lay against him! Santa brought them a Play Station 2!!! After Santa left, we opened gifts! Little stinker Spencer wanted to know how I knew to get them some games for the PS2!! "Did you tell Santa what to bring?" I smiled and said, "I may have!" He didn't ask any more questions! I think someone is just too smart! I didn't get the boys out yesterday so we didn't get together with the others at Mamaws and Papaws! They were too tired to come up yesterday evening so they are coming this evening! Mamaw Boggs did have dinner with us! She had bake a fruit cake and it was delicious! We had too much food as ususal! Too much cake and candy! Spencer said, "We're lucky aren't we Mom!" I said, "No! We are blessed beyond measure!" I didn't get any more shopping done but it all worked out really well! The homemade candy was wonderful and I found out that a pone of cornbread makes a great gift as well! There is nothing like the smell and warmth of fresh baked cornbread! It just warms the soul and they really appreciated it! Santa had just been home a couple of days from the hospital with his son who had surgery to removed a tumor and his salivary gland! Something homemade(besides cookies) was just what he needed!
I'm just thankful we have had another year together. I cannot believe how fast it has gone! I guess 52 trips to the hospital plus a week and a half inpatient made it go by even quicker! Needless to say, I'm exhausted and in need of a vacation!! HA! Thanks to Sissy Bear and Mary who have been there for me this year. I couldn't have made it without you all! And to all of you for your continued prayers and support, online friends, and guestbook entries, they help so much!
Please continue praying for us, we really need strength and healing. Nicholas continues to need a miracle. Pray for Spencer for understanding and comfort. He has had several melt downs this week. This is very hard for the siblings as well! Pray for me and Dad for wisdom and for all that God knows we need!
What will my 2008 slogan be? Lord, teach me to wait in 2008!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, December 18, 2007 9:51 AM CST
Dear Santa,
I don't know what I want for Christmas. It don't matter what I get.
Love you.
Your friend,
Nicholas
This was what I was informed last night! I was instructed to write this on the computer to santa for him! I thought it was precious!
Spencer said they wrote one to santa at school.. I asked him what he asked for and the teacher had ideas for them. He said he wrote down that he wanted a cell phone and a lap top! I told him he was not getting a cell phone and that they already had a lap top! He didn't realize their computer was called a lap top! Too funny! He then said he wanted Hot Wheels! Hmmmm, I need to go shopping!
Nicholas was excited last night and just couldn't go to sleep! I have a nurse for three days this week! Then, we will be off work for a couple of days next week! Spencer is out of school until the 7th of Jan! Long break for them! I'm sure the teachers welcome it! Sissy Bear will be Grandbaby Jack bound! No doubt about it!
Stephanie, Brad, and Braden visited us last night. He was so sweet and precious! I did get some loving in but Nicholas wanted to know why on earth I spent more time with him than I did with them! Yes, definitely jealous! He sat in Steph's lap though and I pretended to be jealous! Spencer played and played with Braden and Brad! I think they wore Brad out! I can't wait til they come back for Christmas! Fun time for Braden! He is 10 months old and at that fun age! Everything interests them and they love everything! I cannot believe my babies are growing up so fast!
Pray for all the children that are going through treatments or facing illnesses that are life threatening! Praying for all to have a very blessed Christmas!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, December 17, 2007 1:04 PM CST
Hello,
I've tried to update but kept loosing it! I gave up! Any way! I've finally gotten a nurse trained and then the ice storm hit this morning! Oh well! She was late but at least she showed up! I think she and Nicholas will get along just fine! Nicholas loves her already! He is such a love bug anyway!
He did get a couple of transfusions since I've last updated! He did well last Fri and just received platelets. His ferritin(iron) level is extremely high but did drop 300 points this month. I'm praying the Exjade will work better! It is suppose to be the best med for high ferritin....we'll see. He had a low grade temp and received a dose of antibiotics while we were there on Fri as well. He seems fine now. He complains of being tired all the time and so do I!!!! I'm sure for different reasons though. HA!
I haven't shopped for Christmas and I probably will not have time to either! We did get the boys theirs and that is the most important I guess! The rest will just have to wait! or get homemade candy!
I hope and pray that all of you have a wonderful Merry Christmas.
Miracles, Blessings and Bear Hugs!
Donna
Wednesday, December 5, 2007 11:54 AM CST
Hello,
We are now totally without a nurse. I told Nicholas and he was devastated. He said and ended up screaming, "Why am I loosing all my friends? (Grabbing his head)WHY? WHY? WHY?" Now, we look for new nurses. New friends!! I told him he would have to put up with MOM! He nuzzled me and was acting like a little puppy, then just wrapped his little arms around my neck and gave me the biggest hug! If he only knew how much I needed it!!!! So precious!
We do really need your prayers right now. We are very tired and exhausted. No sleep, stress, and worry can really zap your strength when you need it the most. It can cause your heart to beat too fast. It can cause your hands and feet to turn ice cold. It can make you chill and your teeth chatter. It can make you sick and cause you to vomit. It can keep you awake. It can make your blood pressure too high! It can give you a major headache! To name just a few! I know! Too much info!
Nicholas is doing great! His secretions have diminished and he is rotten! He hates homework! Love his little heart! He is so manipulative! He tries to weasel out of it with any excuse! He is spoiled! I had to make him read yesterday! He did and actually ended up having fun! Of course I had to make it fun! He did really well and even enjoyed his math! I'm sure he would have much rather read his books but he didn't have too much to do! Bad Momma! But then again, I love to spoil him a little bit too! ;)
Spencer is doing pretty good too. He is finally over his cold as am I. He is finally in a good mood as well! He doesn't like homework either! HA! Loves math though!
Continue praying for all the ones in transplant or treatments. ST Judes is usually full and the adult cancer treatment room next door is too! Pray for us on Fri as we go back for transfusions.
Miracles, Blessings and Bear Hugs,
Donna
Monday, December 3, 2007 12:35 AM CST
Hello,
Well, Dec 1 is here and gone. I think Christmas has begun at our house. Jeff and I got the boys a betta that was promised months ago! Ha! I'm just running a little late! Nicholas' is red and he named him Red Boy and Spencer's is yellow and was dubbed Sunshine! Nicholas was thrilled beyond measure! He kept saying, "Mom, of all the things you'be bought me, the fish is the best! My very own fish!" Wow! If I had only known this a lot sooner! Ha! They talk to them before going to sleep every night! It is so cute to watch them. Spencer loves to feed his! I guess we did good on that one! ***Pats myself on the back!***
A Santa update...Nicholas has asked too many questions and suspects everything and questioned about the reindeer flying? Spencer, almost in tears, fully declared that they had little wings on their feet and that was the magic that made them fly! No, I didn't ruin their Christmas!!!! I told them to believe what they wanted to believe but I have a feeling that Nicholas just knows too much and has figured it all out! Spencer will still believe....maybe, I'm not sure he ever did! He is too careful to note every Santa detail! Santa, you have your work cut out for you this year! You had better pull off one spectular performance! I still have to find the stockings! I'm in a heap of trouble if I don't!!!
Sissy Bear is still in Mamaw heaven! She would move to Ark immediately if Nicholas would let her! HA! He is still miffed at her for going in the first place! He told Joyel that he wasn't mad anymore because you know he can't stay mad long! He is so funny! He told her that he was afraid she would love Jack more than him.....:(
He seems to be feeling some better! I am feeling some better today but yesterday was horrible! I do believe it is RSV! Pray that Nicholas or Spencer doesn't get it! Spencer was still stuffy nosed yesterday! I love my three boys that is for sure!
Pray for all the ones that have cancer or fighting for their life! Nicholas did get platelets Fri and his platelet count was down to 3k! Hgb was 9.5 and he will probably have to have both this Fri! My van is having problems and I'm so thankful we made it home on Fri! I had to bring Jeff's truck today! I'm definitely a red neck country woman! HA!
Pray for Ms Haylee, transplant is Dec 8th, pray for Natalie, going for her 2nd transplant too.
Miracles, Blessings and Bear Hugs,
Donna
Wednesday, November 28, 2007 1:04 PM CST
Hello,
Guess who is now down with a cold??? Yes, me! I'm not feeling well at all! Pray I feel better soon! I'm still trying to get some nursing care.....nope, no nurse has shown up yet! If you know of anyone that needs a job, let me know! LPN or RN, either or both! I need someone to help take care of Nicholas.
Nicholas has a rash on his shoulders, not sure why or what it is at this point. I'm just doctoring it until we go on Fri for transfusions. He has been scratching with his shirt, pulling it back and forth! Hopefully, it is just an irritation and not anything major.
Spencer lost another tooth night before last! He smiles so sweet! He is getting over his cold now that I have it!! HA! He is still feeling a little irritable! I told him last night he needed an attitude adjustment! He perked up a little! Santa is watching!!!!! I think its a little too late now to try to be good but who knows! I guess I'll have to try harder! HAHAHA!
Praying for Clay, and all the others that are facing more and more testing. Praying for great cells, great counts, and the grace to accept the results. Praying for all the cancer victims as well. Praying for all the bone marrow failure diseases.....goodness, I'm hearing more and more.
Thanking God for baby Jack and his health as well.
Miracles are still happening!
Blessings and Bear Hugs,
Donna
Tuesday, November 27, 2007 11:03 AM CST
Hello,
Still fighting colds but for the most part we are doing ok. Still feel like a stuffed turkey! Christmas decorations are up and looking wonderful! Spencer decorated their little village and did a wonderful job! So sweet and precious!
ANNOUNCMENT: Nicholas and Spencer have a new cousin!
Michael has become the proud Dad to a healthy little boy, weighing 6-11, 19" ong and his name is Jackson(Jaxon?) Lee!!! Mom, Whitney is doing well! Sissy Bear is now MAMAW Sissy Bear!!! and Joyel is PAPAW Daddy Bear!!! HA! He was born last night at 9! Black eyes with black hair! I can't wait to see a photo! I'll post it as soon as possible! I'm a great aunt! Whooo hooo!
Keep praying! By the way, when you send in a donation to FARF, please send me an email to let me know! Thanks!
Blessings, Bear Hugs, and another little miracle,
Donna
Tuesday, November 20, 2007 6:48 AM CST
Hello,
Nicholas made it through school last night but was really tired. He is really droopy and looks like he feels terrible. I gave him more Tylenol last night at bedtime and he perked up a little, it was just at the wrong time!
He is very congested but still running just a low grade temp. I'm sure it was where we were outside for the transfusion and it was so cold that morning! He just cannot tolerate cold weather at all. He began sneezing last night and I'm sure he will be in major cold mode before too long. I'm just hoping and praying he doesn't get any worse. He was coughing through-out the night and I gave him a couple of breathing treatments. I'm glad we are going tomorrow for transfusions. I'm sure his counts will be low because when someone with FA gets sick, it makes their bone marrow work extra hard to fight off the sickness. If your bone marrow isn't working properly and making new cells, the counts have to drop. Platelets can live up to 9 days. Depending on how old they are at the time of transfusion and how fast your body uses them equals how long they last in your body after tranfusion. As you can tell, Nicholas' are barely lasting a week.
Red cells live up to 120 days! Now, Nicholas' red cells are only lasting from 14 to 21 days! His body is using them as quick as they go in or the age of the red cells are older. We need baby red cells so they can last 4 months! Dr K think Nicholas has already developed antibodies to the transfusions. An antibody is what your body develops to attack any foreign particles that enter your system. Hence, the antibodies attack the new platelets and red cells from the transfusions and they are just destroyed in a natural process. Yes, this will continue to happen until the tranfusions do not help at all. They will transfuse and then the bloodwork will not show any rise in the counts.
See why we need a miracle? See why we need more research to find a cure? See why we need for you to donate to FARF in honor of Nicholas? Without the research, we will never be able to help others like Nicholas that cannot have a bone marrow transplant.
Please send in a donation to:
FARF-Fanconi Anemia Research Fund,
1801 Williamette Street, Suite 200,
Eugene, Oregon 97401
Yes, I'm begging you. Be a part of Team Nicholas! I may never get to say thank you in person but I know God will bless you beyond measure and it will fill our hearts with Thanksgiving!
Happy Thanksgiving!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, November 19, 2007 9:54 AM CST
Hello,
Nicholas did have his platelets on Fri and Sissy Bear told you how he was singing! Well, he was singing "You are my Sunshine" to his teacher on Wed! It was precious! I definitely need that one recorded! He was just in a singing mood! THEN....on Sunday, he was droopy and sounded really croupy. He actually slept for about a hour and a half! I was up most of the night with him. He wanted us to pray with him last night! He was so nauseated and I had to vent his tummy a couple of times and give him an extra breathing treatment. I keep asking him if he has the sore throat and he asks, "What will they do to me if it is sore?" HA! I know it is! Now, he figured it all out this morning and told me to give him 3 doses of Tylenol and he would be better by tomorrow! He is too funny! I think he is feeling a little better now. He seems a little short of breath still but felt like getting out of bed! Pray that he doesn't develop pneumonia. His lower lobes sound really congested to me! More breathing treatments should help him get it out of there! He is only running low grade temp right now. If it gets any higher, I guess we will have to go to the hospital!
Still no new nurse yet! No joke! Her babysitter quit on her and she is waiting on another one to become available on Fri! It's really hard to be so dependent on others all the time! If they don't show up at my house, I can't show up to work either! Jeff and I are juggling schedules and trying to work this all out! Pray for him, he is major stressed! I just do what I have to when I have to. I can't do anything else! I'm so far behind in everything that I think I'm ahead! HA! If things don't get done, they will still be there for me to do that is for sure! I sometimes wished I had a magical wand! HA! Or be able to twinkle my nose and all would just get done! Ahh, I can dream!
Spencer is doing great so far! He is getting excited about Christmas! I told him that Santa said he was watching him! Nicholas wanted to know just how he could see him! Hmmmmmm, the truth must be told at some point I guess! I even forget and tell them to pick out what they want for Christmas and I'll try to get something on the list! They are definitely going to figure it out! I'm just a spoil sport I guess!
Please remember all of us in your prayers. All the children that are going through treatments of some type and their families need prayers as well.
Praying for miracles, blessings, and bear hugs,
Donna
Monday, November 19, 2007 9:54 AM CST
Hello,
Nicholas did have his platelets on Fri and Sissy Bear told you how he was singing! Well, he was singing "You are my Sunshine" to his teacher on Wed! It was precious! I definitely need that one recorded! He was just in a singing mood! THEN....on Sunday, he was droopy and sounded really croupy. He actually slept for about a hour and a half! I was up most of the night with him. He wanted us to pray with him last night! He was so nauseated and I had to vent his tummy a couple of times and give him an extra breathing treatment. I keep asking him if he has the sore throat and he asks, "What will they do to me if it is sore?" HA! I know it is! Now, he figured it all out this morning and told me to give him 3 doses of Tylenol and he would be better by tomorrow! He is too funny! I think he is feeling a little better now. He seems a little short of breath still but felt like getting out of bed! Pray that he doesn't develop pneumonia. His lower lobes sound really congested to me! More breathing treatments should help him get it out of there! He is only running low grade temp right now. If it gets any higher, I guess we will have to go to the hospital!
Still no new nurse yet! No joke! Her babysitter quit on her and she is waiting on another one to become available on Fri! It's really hard to be so dependent on others all the time! If they don't show up at my house, I can't show up to work either! Jeff and I are juggling schedules and trying to work this all out! Pray for him, he is major stressed! I just do what I have to when I have to. I can't do anything else! I'm so far behind in everything that I think I'm ahead! HA! If things don't get done, they will still be there for me to do that is for sure! I sometimes wished I had a magical wand! HA! Or be able to twinkle my nose and all would just get done! Ahh, I can dream!
Spencer is doing great so far! He is getting excited about Christmas! I told him that Santa said he was watching him! Nicholas wanted to know just how he could see him! Hmmmmmm, the truth must be told at some point I guess! I even forget and tell them to pick out what they want for Christmas and I'll try to get something on the list! They are definitely going to figure it out! I'm just a spoil sport I guess!
Please remember all of us in your prayers. All the children that are going through treatments of some type and their families need prayers as well.
Praying for miracles, blessings, and bear hugs,
Donna
Saturday, November 17, 2007 8:55 PM CST
Nicholas' transfusion went well. He was singing YOU ARE MY SUNSHINE to us on the phone this morning and was telling us how much he loves us. A good way to begin the day!!! Also, he made plans for us to visit this eve! I have had a wonderful Saturday!!!
love,
sissy bear
Thursday, November 15, 2007 10:38 AM CST
Marsh Blood Bank is doing a blood drive today at Food City in Wise and they called & are in desperate need of donors.
If you have time & are available to give, they will be there from 1pm-6pm.
THANKS!!!!!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, November 14, 2007 8:16 AM CST
Hello,
The nurse saga continues....another one is getting signed up today.....hopefully this one will actually show up! I know I shouldn't say anything because I do not know what happened to the other one that was suppose to get hired! I know some things just happen that are beyond anyone's control and it is all for a purpose. It's a sad thought but anyone could get hired in the home-health area, there is such a shortage of nurses. Little companies cannot compete with the benefit packages the larger companies can offer. I'm just praying that the right nurse is hired for my baby. This one makes the sixth one in less than a year. It's no wonder that Nicholas is anxious about who the next one is. I told him they hired another one and he jumped and hooted for joy! About that time, I showed him his cherry pie and he stopped in his tracks and licked his lips! Too funny! He is such a hoot!
Spencer lost another tooth last night and was so excited about his dollar that was under the pillow! The little stinker would NOT be in the Thanksgiving play! He refused. Now, I think he wished he had been in it! He had another fundraiser selling cookie dough. He earned enough to spend two hours in a play tent and he was thrilled. He will get lots of little prizes as well. Hopefully, he will enjoy it! I know he will enjoy it!
I saw on a church sign this morning...People feel like a dog because they growl all day! I thought that was funny!
I'm just a momma bear growling around trying to find a cure for my baby! HA! I wish there were miracle trees. We could go to the tree and pick off a miracle and it would fit perfectly with our need! I wish there was a cure for FA as well as cancer, as well as ....you get the idea! We are thankful for all the miracles we have daily that isn't even considered a miracle by most. Each breath, each smile, each day we have together is a miracle.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, November 13, 2007 7:53 AM CST
Hello,
Well, Nicholas is rotten! He has been in the best little mood and feeling good up until last night. He got sick and actually vomited! I think he had eaten too much candy or too much food in general! He wants to eat all the time! He will continually asks for food and of course, we give it to him! He didn't want anything else last night though! It kills me to see him so sick! Thank God it didn't last long. He was fine afterwards. No fever. But he was panicky about getting his PICC line out! I told him he didn't even have a temp so they wouldn't pull his line! He had to know what would happen if they did take it out...every detail! He even told me what they would do and I said yes, thats what they would do! He just knows too much! Then, he went to the central line and how it would be put back in! He said, "Mom, why don't they video it for me and that way I'll know what they are doing!" Goodness! I didn't even mention his transfusions on Fri. He had platelets, his plt count was 8k and hgb was 10.3! I hope we don't need red cells this Fri! That would be wonderful! Nurse news....we don't have one! Thought we did but it didn't pan out! Waiting.....for someone that wants to work! I know its hard to find someone that wants to take on Nicholas but pray that someone will. He brings more joy than work! He is a little bossy though! ;)
Spencer celebrated his 7th birthday! We had a pizza party and he was in seventh Heaven! Then, on Sunday, he had several people call and sing the birthday song to him! He was all smiles! He was the main man! Yes, we had chicken-n-dumplings and all the fixin's for dinner prepared by Dad and waiting on us after church! It was delicious! And we still have cake left! It was a construction site! It was wonderful to look at and taste! Yummy! Jeff's sister Glenda made it of course! Chocolate! Is there any other flavor? Not for Spencer! He thoroughy enjoyed his birthday!
Praying for all the sick and all the children getting ready for a bmt! A bmt is NOT a cure for FA, it only helps the marrow issues. We'll keep praying for a cure though.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, November 13, 2007 7:53 AM CST
Hello,
Well, Nicholas is rotten! He has been in the best little mood and feeling good up until last night. He got sick and actually vomited! I think he had eaten too much candy or too much food in general! He wants to eat all the time! He will continually asks for food and of course, we give it to him! He didn't want anything else last night though! It kills me to see him so sick! Thank God it didn't last long. He was fine afterwards. No fever. But he was panicky about getting his PICC line out! I told him he didn't even have a temp so they wouldn't pull his line! He had to know what would happen if they did take it out...every detail! He even told me what they would do and I said yes, thats what they would do! He just knows too much! Then, he went to the central line and how it would be put back in! He said, "Mom, why don't they video it for me and that way I'll know what they are doing!" Goodness! I didn't even mention his transfusions on Fri. He had platelets, his plt count was 8k and hgb was 10.3! I hope we don't need red cells this Fri! That would be wonderful! Nurse news....we don't have one! Thought we did but it didn't pan out! Waiting.....for someone that wants to work! I know its hard to find someone that wants to take on Nicholas but pray that someone will. He brings more joy than work! He is a little bossy though! ;)
Spencer celebrated his 7th birthday! We had a pizza party and he was in seventh Heaven! Then, on Sunday, he had several people call and sing the birthday song to him! He was all smiles! He was the main man! Yes, we had chicken-n-dumplings and all the fixin's for dinner prepared by Dad and waiting on us after church! It was delicious! And we still have cake left! It was a construction site! It was wonderful to look at and taste! Yummy! Jeff's sister Glenda made it of course! Chocolate! Is there any other flavor? Not for Spencer! He thoroughy enjoyed his birthday!
Praying for all the sick and all the children getting ready for a bmt! A bmt is NOT a cure for FA, it only helps the marrow issues. We'll keep praying for a cure though.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, November 7, 2007 9:08 AM CST
Hello,
Spencer is truly my hero! He sat in the chair all by himself, stuck out his arm, didn't cry at all, and said, "Ouch!" That was totally different than ever before! When did my baby grow up on me? His hives were just about gone by the time we arrived at dr office of course! But I'm glad we did get blood work when he was flaring up. He didn't seem sick but was very pale and took a couple of naps though. I've been thinking...I know its dangerous! I think he has allergies.... fall ones! This is the third year in a row that he has had hives during November! Besides the allergic reaction to the Amoxicillian, when his immune system is low, he erupts in hives. We may never find out what is happening! Have you heard of anyone else doing this?
Nicholas is still in a wonderful mood and peppy as he can be! I love it! He is rotten! They played and played yesterday evening! Music to my ears! They laughed and laughed!
We may have a new nurse! Wonderful news! I'm happy we can get one on board without much delay! I don't hold my breath anymore! If it happens, it happens, if it doesn't, I just have to do what I have to do, whatever that is!
Remember all the ones that have cancer. Remember the children going to transplant, pray for the families as well!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, November 6, 2007 8:12 AM CST
Hello,
Spencer woke up with a rash on his side. I cringe every time he is on antibiotics now! He just finished them yesterday! I do believe we will have to do more blood work on him to see what is happening. That will not be pretty site! Maybe his Dad can take him! Ha! His dad would turn pale! Who knows! Maybe he would do better with his dad! He had to sleep with Momma last night and stayed snuggled to me all night. He is so precious! He is geting excited about his birthday party at Pizza Hut, Saturday at 5:00 pm! Come if you can!
Nicholas is doing great at the moment! He informed Libby yesterday that Spencer's birthday was coming up and when she brought over Spencer's gift to be sure to bring him one....because when it was his birthday, Spencer gots gifts! It was so funny! He is too cute for his own good! Nicholas' nurse is leaving and he gave her a really hard time yesterday! She has been in tears all week but it is a promotion for her, one she cannot pass up at the time! I will really miss her. She will be going with me Fri but that is her last day. I know it will be tearful one. Nicholas is worried about the new nurse, what she will be like, etc! I just pray they find one!
Ok, I'm the chosen one! I'm taking Spencer to dr!
Later gator! Please pray for my babies!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, November 2, 2007 3:19 PM CDT
HA! I found a computer! Yes, Nicholas is getting his red cells and just finished his platelets. He did have one hive and his count was down to 5k. His hgb was 8.1 but I don't think that is correct and the dr decided to go ahead with the red cells as well. So far so good. He is a little on the grumpy side today maybe after he gets red cells he will be in a much better mood. I'm sure hope so.
Spencer is doing much better today. One dose usually puts him back on track and that proved true again today. He was so sick. I think his system is just low from the stomach virus and strep is going around. He continued with a temp most of the day yesterday. Today no temp so far and pizza with Dad will make anyone feel better! I knew he was going to be sick that night. He was extremely pale and just wasn't acting right. My antenna was up and in major watch mode. Around 2:30, he was clearing his throat and sounded so croupy when he coughed. I checked on him and he was so hot...103.8! His temp was down some by the time we got to dr but his strep culture came back positive. I knew it! He slept most of the day and I'm so thankful the antibiotics worked. Last Sat., he began itching on his toes and they turned really red. Then, his wrist broke out and itched....just like before! I spoke to the dr about the autoimmune response he had before and they have x-rayed his foot(he says it needs to pop and it hurts) and it is ok. They will do more extensive blood work on him when he is well enough! And he will get his flu shot one of these days. Goodness, he is having a rough time. He could use some cheery mail and will be celebrating his 7th birthday on the 11th! He would love to get some birthday cards if you feel lead to send him one.
Thanks Abbi, for the cards and photos of you and your brother! They loved them!
Thanks for the prayers for the last two weeks! God is sufficient! Last night, Spencer wanted to sing, "Thank You Lord, For Your Blessings On Me!" We all sang it and it did my heart good just to hear their sweet voices. Spencer said, "Let's sing it Sunday Mom!"
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, November 1, 2007 10:36 PM CDT
At 2:00 this morn Spencer's temp was 103.8. He has strep. That is the reason Donna didn't update today! His temp was up again this eve. Pray for him, too.
She will take Nicholas for transfusions tom., so you won't hear from her til Mon., prob.
Keep them in your prayers, please....
love,
sissy bear
Wednesday, October 31, 2007 7:27 AM CDT
Hello,
Yes, we are home! Nicholas said, "It's good to be home isn't it mom!" Yes, even a messy house was sweet! I tried Nicholas back on his formula but he was getting nauseated every time..so I put him on pedialyte for the evening and night. We will try his formula again! He has lost some weight but you can't tell it yet! I was worried about him. He was so sick! He was loosing to much fluids in his diarrhea and his kidneys weren't working much. His face was puffy as it could be. Then, when the diarrhea stopped, his kidneys began working better and he flooded the place!! I was also sick as I could be, began chilling and serious intestional cramps! I believe that is the worst virus that I've ever had or ever seen the boys have! It is painful! You think you are better and then, it will knock your socks off again! Pray that Nicholas can get back on his formula today without any more symptoms!
Spencer is better now and eating great, just in time for chocolate goodies tonight! I'm not sure if we are going anywhere tonight, maybe just close to home! Some have already dropped off their goodies early, much to their delight! Everyone is awesome! I'm so blessed to have a dedicated support group that isn't even family. I'm not sure how I could survive without them! You know who you are! Thanks from the depths of our hearts for taking the time to cheer us up! The phone calls that help break up the day while in the hospital are a blessing! It helps to at least hear someone else's voice when you cannot leave the room. I get tired of Sponge Bob's! HA!
Nicholas' counts yesterday were: Platelets- 17k, down from 59k when we went in, and HGB was 7.9, down from 11.9!(which wasn't correct due to being a little dehydrated) but really down from 10.9 on Fri. We will be going back Fri and he will have to have both platelets and red cells. That makes for a long day, having both transfusions. I just have to take it one day at a time and do whatever is necessary that day.
Our hearts are saddened by the loss of Jack, another one that had FA. He is now FA free, transfusion free, infection free, hospital free, needle free, and bath free! He prayed when it was bath time, telling Jesus that he didn't want a bath! Too cute! He was so much like Nicholas, his little hands were identical to Nicholas'! It is amazing! He was one awesome little boy and now running, playing, laughing with the angels. God knew that Jack needed to rest in His everlasting arms of peace and contentment! God bless Jack's family as they deal with the loss of his little spirit in the house.
Miracles, Blessings, Bear Hugs, and Jack-o-Lanterns,
Donna
Tuesday, October 30, 2007 7:04 PM CDT
Nicholas is home!!!!! Another blessing! I don't know who is happiest--Nicholas or we!!!!
Donna isn't feeling well. Pray for her. I think she has this virus, too.
Thanks for all the prayers and thoughts.
sissy bear
Monday, October 29, 2007 2:45 PM CDT
Nicholas has not vomited nor had diarrhea today! His temp is 99. something at this time. They did a CBC today; he will know shortly if he has to be transfused tomorrow or not. I think I can say safely that the bug is leaving(hopefully) and he will be home in a couple of days!!! That is some positive thinking!
I love this child soooo much! He truly is a blessing!
Please keep lifting them up in prayer.
sissy bear
Sunday, October 28, 2007 8:57 PM CDT
sissy bear here! Nicholas' temp down some, but keeps spiking. It was 99.7, but he began chilling, getting ready to spike around 8:00 p. m.. He has slept most of the day after they gave him fenagan(sp?) through iv. He needs the sleep; he slept about 2 hrs. last night. Every time he had to use bathroom during the night, he would tell Donna that he was sorry that she had to get up and help him! He told her that he was sorry he was sick and she had to go to that old place!!(hospital)
They found a trace of blood in his urine and in feces. Why in his urine? I don't know. I can understand in his feces, bc he went so many times(?) maybe.
Cultures haven't grown anything yet.
Donna isn't feeling well; her stomach is bothering her. I sure hope she doesn't get sick, too.
Mom is feeling some better today; she is complaining with her knee hurting.
Rem. all in your prayers.
love,
sissy bear
Saturday, October 27, 2007 5:09 PM CDT
sissy bear here!
Nicholas is sick! He has vomiting, diarrhea, fever, chills; they are on the way to Johnson City Hospital. He probably has what Spencer had; it is tough on healthy kids, so....
Put Nicholas on your prayer chains.
Love,
sissy bear
Thursday, October 25, 2007 8:54 AM CDT
Hello,
There was a little stinker out of bed early this morning. I got lots of hugs and sweet little kisses! He was so helpful this morning...I think he was rushing me out the door! He said, "No, I was just helping!" HA! He is so sweet and precious!
Spencer went to school today and so far no one has called me! I'm praying he makes it the entire day without any mishaps. He isn't feeling his best yet! This is the worst stomach virus he has ever had! I don't think he has ever been this sick before. Pray for the children that are suffering through this virus! Still praying that Nicholas doesn't get it as well. Horrible!
Nicholas will get platelets tomorrow as far as I know. I'm a tad worried because he had problems in school the other night. He just could not concentrate at all. He couldn't do what we know he can do...he seemed very tired. He was pale last night and on the emotional side. He seemed much better this morning though. He gets Dad to read to him when he gets up early! Of course, Jeff does whatever Nicholas wants! He couldn't tell him "NO!" if his life depended on it! HA!
Praying for all the troubled homes. Praying for direction in each of our lives. What does Jesus mean to you? Is He a spare wheel or the steering wheel? We saw that on a church sign last night and Spencer wanted to know what it meant. After explaining it to him, I asked him what Jesus meant in his life. He said, "Both!" Good answer! If Jesus is the steering wheel, then we know He is there in time of trouble and can call on Him any time.
Praying for miracles, blessings, and bear hugs,
Donna
Wednesday, October 24, 2007 9:20 AM CDT
Hello,
I'm baccccck! Ha! Where to start? Nicholas did get platelets with a count of 5k, red cells with a hgb of 6.9, and he did well with both but made for a long long day!
Saturday, we did make it to the boat regatta for the cub scouts and they really had a ball. Three of the scouts sat with Nicholas and explained things to him. They were so sweet and they became fast friends! They let Nicholas blow his borrowed boat and he did it by himself one time and with help another time! Some of the scouts gathered around him chanting, "Go Nic!", then when he finished, we all clapped! It was precious! Yes, it brought tears to my eyes on numerous occasions! He thought he had won a huge trophy! They did give him a medal for doing such a good job! He sported it the rest of the day and couldn't wait to show his dad! It was so cute! Spencer wanted to know why he didn't get one!
Sunday, brought Spencer a stomach bug that he still has! He has lost 3 lbs that he could not afford to loose! He seems to throw up anything with milk in it too. He temp has come down but was really high on Sunday. He looks so pale and just does not feel good at all. We tried going to school on Monday after I took him to the dr and he did ok for a couple of hours but didn't feel up to going the last couple of days. Pray that he recovers soon or he will become dehydrated on me! I cannot stand to see him sick! Breaks my heart! Also pray that Nicholas doesn't get it! I cannot imagine him that sick and low platelets! UGH! Not going there!
Continue praying for my neighbors as they deal with loosing their brother and son. I know it is nothing but the pure devil! He seeks to kill, steal, and destroy. Resist him and he will flee!
Pray for miracles, strength, courage, wisdom, and patience.
If the devil comes knocking, ask Jesus to get the door!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, October 22, 2007 10:22 AM CDT
sissy bear here!
Transfusions went well. Yes, transfusionS! Nicholas needed red blood cells, also. 2 weeks since last one!
Donna is taking Spencer to DR. today; he is very sick with headache, temp. and vomiting.
Rem. family in prayer.
sissy bear
Friday, October 19, 2007 3:28 PM CDT
sissy bear here! just a brief note to let you know that Nicholas' nurse didn't show a couple of days this week. (Her baby is sick) He went today for platelets; I haven't talked to donna yet; I hope the transfusion went well today, too. He was drooping yesterday-he felt sick at his stomach, too. I didn't go to his house yesterday bc one of my students had to leave class twice(vomiting). It is going around in this area. I hope I don't get it. Well..., I would rather have it than Nicholas or Spencer.
We had a tragedy in our community. A man shot two of his brothers, went after another brother and after his mom; police came, so he shot himself. His mom and brothers are ok. Rem them in your prayers.
Love,
sissy bear
Monday, October 15, 2007 8:24 AM CDT
Hello,
Well, it was a long trip..arriving late but our appt was later in the day and we slept in for a while. Then off to get platelets, and we waited and waited! Guess what happened? The bag burst! Yes, they had to start all over and then we waited! Well, the G-J tube exchange was scheduled for 2:30! Well, there we waited and waited and waited! They were running a couple of hours behind! ARG!!!! The only nice thing that happened up to this point was we did get to see Jo and Jacy briefly and we did get to meet another FA family. That was good! We were the first family that they have met in person! Of course, I told them about camp and they already knew about it! They are going to try to go next year.
Then, Nicholas told the g-j tube dr to "Step on it!" which made her laugh! She had sort of a hard time switching it out! He did bleed some during the process. Nicholas didn't cry though! The first time ever! Thankfully, we made it back upstairs to get his transfusion and all went wonderful...meaning no reactions! Then, we drove home and arrived at mid-night! Yes, it was a rough trip! The rest of the weekend was good.
Baby Black Girl brought her kittens over and the boys were so excited! Spencer tried to catch one and it made Nicholas burst out laughing and he couldn't stop! Spencer thought it was funny too! He tries to make Nicholas laugh most of the time by being silly or over dramatic! So precious!
Remember Wayne, he is having triple bypass this morning. This is a friend of ours. Remember Mary's Aunt Linda, she has a mass on her lung and is in the hospital right now. Pray for all the children that are sick as well..
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, October 11, 2007 7:54 AM CDT
Hello,
Spencer is selling popcorn! Please click on the link above and check out what is available. I cannot get the link to work where you can order directly but I'd be happy to mail it to you if you want some. Please let me know what you want! I will be taking orders up until 22nd! Thanks so much! He looks so cute in his Tiger Cub duds!
He has to know the Cub Scout Promise, the Law of the Pack, the motto, the sign, the handshake, and the cub scout salute! He knows most of it already and had to tell the leader last night. I felt so sorry for him. He got so nervous and refused to even look at them. Then the leader came and sat down with him and began to talk in general to him then began asking questions. He ended up telling him all of it but inched his way into my lap while doing so! He was so excited that he did it! He said, "I've got that down pat, don't I mom?" He practiced all the way home and some afterwards. He had only studied it one night so he did pretty good! Nicholas wants to join so badly but he has school on meeting nights. I was watching them do the cub scout sign, arm straight with two fingers up, and thought of Nicholas not being able to do it. It broke my heart! Its the little things sometimes that are what opens the flood gates!
Their first meeting! 
Nicholas is doing good right now. He has a few bruises but not coughing up blood or anything. Whew! I'm thankful for that! He was up at 7 this am due to a bad dream. He dreamed that a policewoman carried off Baby Black Girl! He woke up crying his heart out! Jeff had to show him that the cat was ok! He also dreamed something about his mamaw but wouldn't tell Jeff what it was. So he has had a rough morning. He hates nightmares! He will try to stay awake at night so he won't go to sleep and have them! He will probably do that tonight too! Sometimes he will toss and turn til 1 am! He had just gotten out of that habit and I guarantee it will begin all over again! Please pray for no more bad dreams!
Hope you all are having a great day today! Did you get to smell any roses yestereday? HA! If you haven't a clue what I'm talking about, read yesterday's journal! Also, I haven't had any chocolate veggies in a long time! Trying to stay away from it!
Feed your faith and doubt will starve to death!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, October 10, 2007 12:46 AM CDT
Hello,
I'm devestated! I was just told that chocolate isn't a vegtable! YIKES! HA! I didn't mean to scare you! I just found that amusing! I'm being crazy today! As usual! It does help!
Nicholas is still rotten as a little stink bug! He woke up early again this morning! I asked him if he was going back to sleep! He nodded his head yes but hid his eyes with his hands! I kissed him and then laughed saying, "Until I leave?" He couldn't help but smile then and nodded yes! He was going to play possum and then holler to his Dad to get him up! Now I know!!! I unhooked him and he was all smiles! It was time for Spencer to get up and we all ended up on the couch and Nicholas was petting and kissing on Spencer! It was so precious! I just had to say it! "Someone's getting jealous over here!" HAHAHA! Spencer smiled real big and gave me a sleepy hug and kiss! So precious!
Be sure to hug your babies! Cherish every moment. Spencer is growing straight up! Time sure is flying by while I'm standing still in my deep little foggy world! I sometimes get glimpses of the real world and wonder when on earth that happened! or what was that about? Ahh, life goes by when you are planning your life! One thing FA has taught us is to stop and smell the roses! Roses? When was the last time I smelled of a rose? I sure can describe that antiseptic smell of a hospital though! HA! That definitely doesn't smell like a rose! I tried to warn you I was crazy, but you kept reading! There just has to be humor somewhere! Most of the time life with FA isn't humorous at all. FA stinks. FA hurts. FA makes my eyes melt. FA is horrible. FA strips the soul to bare threads. FA tries the faith. FA robs us of our babies. FA is not good. FA destroys. FA creeps in and shrouds you in fear. FA is cancerous. FA robs. FA consumes. FA is.....do you get the picture? But, yes there is always a positive side and that is what I tend to dwell on... our precious little angel that has FA is one happy little imp that is total sunshine. He brightens up our world, our life, and our home. He isn't FA! He is a precious gift from God that smells wonderful, whose love lifts us up when we are down, heals, restores faith, and melts our hearts. He just loves life. He always picks me dandlions. The simplist of things always bring the biggest smile to his face! And it is contagious, one look at him just makes everyone else smile! We are blessed.
Ahhhhhh, smell the roses before you push up daises!
Miracles, Blessings, Bear Hugs, and Roses!
Donna
Tuesday, October 9, 2007 12:26 AM CDT
Hello,
Nicholas does indeed have a loose mic-key button g-j tube! Yes, he does have to have it replaced and that will take place in Cincy this week. We had to add water to the ballon several times last night, and I'm sure it has a hole in the balloon. A tiny one that leaks off the water after a while and when it gets floppy, Nicholas will try to hold it in place. He called me yesterday saying, "Mom, I can't stand it any longer, you have to come home and add some water to it!" I talked the nurse through it and then he was fine! But I did have to check it the moment I walked in the house! He just panics! Bless his little heart! He is very adament about going to Cincy to have it replaced there with the woman dr! Ha! Hopefully, it will be the gentle one that replaced it last!
This morning I woke up early and stayed up and then my entire crew was awake by 5:30 am! Spencer crawled into our bed and Nicholas said something...I asked him what he said. He said, "Someone's getting jealous over here!" TOO funny! Dad went over and gave him some sugar and hugs! Nicholas even laughed! He did go back to sleep though after we all left! I'm sure we will all be tired this evening!
Keep praying for all the children in our area that has cancer!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, October 8, 2007 7:37 AM CDT
Hello,
On Saturday, Nicholas began itching on his shoulder again and there was another hive! His temp went up and his face flushed again but it didn't last long. Then, after he was in bed, he began scratching behind his knee and his hip. He was flushed and had another temp! I had to give him Benedryl again! It helped and he slept well! On Sunday, he was fine and didn't have anymore hives! After church, we took them to Natural Tunnel! Picnic and playground then a chair lift ride to the tunnel! They loved the chair lift ride! Nicholas couldn't enjoy anything for wanting to go back and "fly again!" We made it back to the top and guess what! "I want to do it again!" And they did! He absolutly loved it! Spencer did too! Mamaw Boggs and I thought we would lose our sandals and she took hers off and held them! I just held my feet up! Too funny! It was beautiful and cool air was flowing....it was just perfect! We met Tony Scales, the author of the book Natural Tunnel. We missed all the trains! Then, we went back to the playground and there were lots of other children there. They were all fasinated with Nicholas. His hands, no thumbs, his little arms, and one little boy put it this way, "I like that little guy, he's cool!" I walked over and answered all the questions! I also gave one mother a health lesson in bone marrow.....yes, I was nice and answered all her questions too! One little boy named Tristin asked Nicholas if he could be his friend. Nicholas said, "Wellllllll, I already have lots of friends but I guess one more won't hurt!" HAHAHA! Spencer was running around here and there but would come back and check on Nicholas ever so often! Nicholas was fine! He met a little blond headed girl named Tiana and he was fairing just great! I told them that Nicholas was afraid of heights and she said, "Tell him he just has to face his fears!" If only she knew what he was facing!
After the tunnel, we went to a corn maze! It is normally a haunted one but they let the cub scouts go through without any scares! Nicholas was exhausted by the time we reached the top and we didn't walk back down through it! We took an exit around the field! I asked them how they liked it....Nicholas said, "I didn't realize it was so long!" Spencer loved it! We didnt' get to stay for the camp fire....we headed home! Another wonderful weekend in the Boggs Bearz Bungalow!
Miracles, Blessings, and Bear Hugs,
Donna
Friday, October 5, 2007 6:15 PM CDT
Hello,
Ahhhh, rough day! Nicholas' counts were down to: Platelets were 4k, Hbg was 6.5, but his ANC was up to 1365. He was extremely tired last night and very pale this morning. He received platelets and then the red cells. He began breaking out in hives...4 to 5, here and there. Then in about an hour, proceeded to get nauseated(violently) and flushed. They dc the red cells and he lacked around 50 cc getting his dose. They gave him benedryl and hydrocortisone. Of course, the benedryl sent him into major grouchy orbit and he slept all the way home. He was nauseated this morning before he even got out of bed and again on the way to hospital this morning. So, yes, he has had a rough day!
He still wanted to go to Sissy's though!!! Yes, he did get to do that! He deserved a break!
Again, pray for miracles for all the children that we see each week and the ones we don't see. They really need our prayers, as well as their families. We do Thank God for the transfusions that he received and hopefully, they raised his counts way up!
Miracles, Blessings, and Bear Hugs.
Donna
Thursday, October 4, 2007 6:56 AM CDT
Hello,
Spencer told Nicholas that their monarchs were hatching out and Nicholas cut a tantrum wanting to go see them! I told him there was no way possible. Then, I remembered that tonight is Family Academic Night, and told him we may be able to see them then! He smiled from ear to ear! I told him he would have to be extra careful around the other children because I know his platelet count is really low!, probably around 6ish today. Tomorrow will be even lower. Michelle, his nurse, didn't know what his hgb was and was commenting on how much she could tell a difference in him this week. She said that they went outside and after a while he was just exhausted and turned really pale. He will definitely need red cells! Then, his face will pink up and I'll think he has a temp! HA! This week has been so long. I'm just waiting for his transfusions. So be praying that they go well tomorrow! It will be a long day for us....
Nicholas' mickey button seems really loose to me! He turned over the other night and the water he had drank came out on his shirt! If the ballon that holds it in has burst, that means another trip to Cincy! If it gets too loose and starts flopping around, he will bend over slightly and hold it in place continuously. That is our signal! Unless he has realized it and won't do it anymore! Yes, he is sharp! He doesn't want to go to Cincy! He hates to have his g-j tube changed and this one has only been in 2 months. The last one lasted 6 months, the longest time ever! I'm just waiting to see. To me it is very loose, but evidently he doesn't feel like it is falling out. We'll see.
Spencer went to his first Cub Scout meeting last night! He will be selling popcorn! Look out! You can also order online I think. I will post a link in here if that is an option.
Please remember all they families going to JC. There are several from our area here and the surrounding areas that really need your prayers.
Miracles, Blessings, Bear Hugs, and Monarchs,
Donna
Wednesday, October 3, 2007 12:03 AM CDT
Hello,
Another day without any bleeding...another blessing.....I'm thankful for every little one. Waiting for the big one!
Looking back over Nicholas' counts....he had a bout with pneumonia in Dec, 2004. After that episode, his marrow never recovered. He was already on a downhill slide and as his marrow failed, infections begin to set in. He had nothing in his system to help him fight, and I think it was really put to the test. Once his marrow has taken a hit with any infection whether it be a cold, picc line, port, or some other germ in his system, it would never quite recover back to where it was. Now, he is producing nothing, or very little on his own. It is heart wrenching and has been horrifying to be a witness to. Jan, 2008 , will be 4 years that he has been transfusion dependant. It has all been most of a blur. You function as best as you can. You still eat, breathe, smile, laugh, cry, and live on the outside while dying a little each day on the inside. Overall, he has been suffering the consequences of feeling bad and not just up to par but no one would ever know. He does this because he has known nothing else. He works and does his school work with a hemoglobin(hgb) of 7.5 and most of the time he does it with a smile. He laughs and has a sense of humor that just doesn't stop! He smiles and makes the world smile around him! He made straight As....and I'm sure didn't feel like it most of the time. I'm sure most of us adults would have complained and used a low hgb for an excuse not to do anything! He will say, "I'm so exhausted!" but only when he is running around and playing! He cannot tolerate much activity for any length of time. As his hgb gets low, it tires him to walk for any length of time. The other day at Bays Mtn, he would have continued the tour but he was so tired and it was a blessing that we had to leave early!
Dad even carried him at times too! (I'm sure Dad's back was killing him!) He still carries on. He still wants to run and play without having to stop to breathe! He hates it when he cannot be rough! He never complains though, not in the way you think he would or could. I guess the best way to describe it is he endures his circumstances. He does what he can when he can and enjoys the simplest of things. Yesterday we were talking on the phone, he said, "Well, I'll let you go! We're going out to catch a monarch!"
Miracles, blessings, bear hugs, and monarchs!
Donna
Tuesday, October 2, 2007 10:02 AM CDT
Hello,
Just have too brag a little! Parent Teacher Conference yesterday evening...resulted in...report cards...drum roll please.......
Nicholas......straight As and one A-plus in science! His teacher is really proud of him and smiled from ear to ear! He can do the work, it just takes him a bit longer! He was so proud of himself last night!
Spencer.......perfect score, they don't give letter grades until the 2nd 6 wks. His testing revealed him to be on a 2.9 grade level! Second grade after the 9th month! He did really well! Another test revealed him to be in the 98 percentile on a national level! His teacher is so proud of him and said he was actally reading on a 5th grade level!
I'm so proud of my babies! If you see a glow, its us beaming! Ha! They are precious and I love them so much. I explained Nicholas' situation a little better to Spencer and I can tell a difference in his attitude. He still asks, "How's brother feeling?" but I can see a sweet tenderness toward him as well. He will pet on him and lie beside of him, kiss him good morning, and I know he worries about him. He can still be all boy and too rough with him as well! I'm constantly saying, "Be careful! Brother's counts are on the downhill slide!"
Nicholas seems to be ok. I'm sure his hgb is low and he is a little pale but he seems to be energized as usual! His little body just gets so tolerant of low counts but one thing I'm noticing is he is bruising more and more. The transfusion did not make the bruise on his face disappear at all. That in itself is heartbreaking! I'm just on edge most of the time and continually scan him for new signs of bruising or something else erupting!
Praying for miracles, new treatments, new meds, a miracle that can grow stem cells without bmt!
Praying, blessings, miracles, and bear hugs,
Donna
Monday, October 1, 2007 11:23 AM CDT
Hello,
We had a great weekend. Spencer had a sore throat and sort of developed a cold but other than that didn't slow him down any. He is so funny! They played and played! Toys scattered all over the floor! Then we decided to have a cook out! Well, toys scooted over and we had a cook out! That was the clean up! Ha! I love to see the toys in the floor though...that means all is well and good!
They did get to enjoy outdoors some this weekend. It was really nice. Spencer is riding his bike without training wheels and doing a super job! I found out he doesn't like change! And if he doesn't do it without mishap the first time, he is furious! When he first started, he declared he wasn't riding it anymore! With lots of encouragement, he has it just about mastered! He loves showing off now! Nicholas has finally graduated from the tricycle(yes, the little one) to a trike! He can fly in it but tires really fast!
I'm just tired and exhausted! Dad is too. Bless his heart, he did most of the cooking this weekend and it was delicious! Wish I had some right now!
Please remember all the children with cancer and going through transplants and transfusions. Please remember the ones that are sick as well.
Praying for miracles, blessings, and bear hugs,
Donna
Friday, September 28, 2007 7:58 AM CDT
Hello,
Well, Spencer had a field trip to Bays Mtn Park! We took Nicholas and they saw 4 wolf pups that were 5 mnths old, which in wolf life is almost grown! They howled for the show and everyone had a great time! I called to see if they could work Nicholas in for his platelet transfusion and they did! So we left the park early and went for his platelets. His platelets were down to 6k! His hgb is 7.7 and his ANC was 630. He will definitely need red cells next week. I don't think Dr K is wanting to transfuse him twice a week right now, for whatever reason! I just don't know what to think. I'm think he will be pretty low in 7 days every time.....maybe we could go every 5 days or so...not sure what they are going to decide on...he said they would talk about it! I WANT TO KNOW WHAT THEY ARE THINKING!!!!! Do they think it will only get worse? Do they just not want to do more because of ??? insurance? feel it won't do any good? feel that he will be ok without it? or whatever reason?....Its pretty evident that he is getting lower faster! He had a huge spot of blood around his mic-key button dressing about the size of a quarter! He coughed up blood specks for two days! He is bruising really easily. I feel those are enough indicators of what is happening!!! I will call and go in ealier if he is symptomatic. I would have too at that point anyway, and opinions can fly out the window! I'll do whatever I have to do....yes, I've made up my mind! HA! Momma Bear is on the loose!
Praying for all the children going through transfusions all the time as well. Dylan received washed platelets yesterday as well and he was ok when we left! That's another thing we could try giving regular platelets slower again and see if he has a reaction.....maybe.....that is scary enough but we would be closer to a picu! Maybe..it would be worth a try to see if his platelet count would go up any higher. That would be worth a another try though. We'll have to wait and see I guess! Pray for all the parents that have to make decisions for thier children. We need wisdom, knowledge, common sense, and lots of patience, for our children as well as the health system!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, September 26, 2007 11:42 AM CDT
Hello,
Wondering about a lot of different things today! Questions have been floating around for some time but I've had to deal with them before I can share and I may not! I did share about Nicholas saying things about not being on the right meds and that was heart breaking enough! I'm worried about having to take him twice a week for transfusions. In truth, he has probably needed them twice a week but the reality really hits hard sometimes! I'm just waiting for the bomb to fall. I can see it coming and it seems like I'm frozen in time. I cannot move, think, react, focus, feel, or anything! I know beyond a shadow of a doubt it will hit me at some point but I'm too little to stop it! Its too big for us mortals to handle. It will take a supernatural strength to stop it! I'm too little but I know a God who can! It was just like the scene played out before me last night. The kitten was trying its best to reach his momma and didn't know that he could fall so far down. He just stepped out on nothing and the Momma Cat caught him by the neck in the nick of time! I was standing waiting to catch it but he didn't know it! Momma Cat didn't either! She brought him down to us and that is when I found out it was a he! Nicholas and Spencer were mesmerized. That's faith! Stepping out into danger to be caught by the hand of God and carried to safety! I know the bomb will fall but I also know God will be there and carry us through as we pick up the pieces. Maybe its already hit! I think it hit us a long time ago! The diagnosis? The zombiefied hospital stays? The putting one foot in front of the other and making your body move without direction or even thinking about what you are doing? The continual chaos? With glimpes of a better day? With lots of hugs and kisses in between to bring us back to reality! Live each day as if it were your last. Be happy and content with the blessings you already possess. Make each moment count! I know God has been with us during all of this! I can see Him working through Nicholas in a mighty way! Nicholas is truly an angel from God to bless us beyond measure and show us the love of God in a totally new way. I know he isn't the only one but he was lent to us for a time. Spencer is too. They are both amazing little inspirations! On loan from God directly to the heart, heaping blessings upon blessings and bringing millions of smiles! Thank you Lord for my babies!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, September 25, 2007 7:14 AM CDT
Hello,
I checked with the Dr in JC and they do not agree. One thinks we should come in on Wed and the other one on Fri! I have an appt for Fri but the idea of him so low is making us have a tense week to say the least! It is probably low every Monday but not knowing helps I guess! I will have to watch him close and if he has any signs of bleeding then we will go to JC! That isn't anything new though. I keep cautioning Nicholas and he asked me last night, "When will my platelets go up?" Then, he stomped off and was grumbling to himself,...."I'm just not on the right medicine yet!" Yes, this broke my heart. I know he probably understands a little too much on one hand and then again, he doesn't fully understand.
Dad was putting a drain pipe in at the church and we went down to pick up Spencer. Nicholas had put on his speaking valve, the passey muir and was singing to the top of his lungs! He was singing about "His Heavenly Father! and the devil" He said, "I love my Heavenly Father!" I told him that his Heavenly Father loved him too! He said, "Soooooo much!" Precious angel!
Spencer is doing great in school. He is growing taller and thinner! I just wished he would put on a little weight! I think he is too thin. Yes, I'm a worry wart and am just like my mom! He loves math! He brought home is first reader and he has already read the entire book! He will get to a more advanced reading when they start the Accelerated Reading program. Hopefully that is soon! His teacher said he did wonderful on the PALS tests! That isn't a surprise! He is a deep thinker!
Praying for all the children in this area with cancer! There are just a high number here and its heart breaking! Remember all the adults as well. Remember the FA community.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, September 24, 2007 9:20 AM CDT
Hello,
Nicholas received HLA type specific platelets on Fri. Thinking that he would hold on to them longer if they matched him perfectly...we did a platelet count this morning and it is 18k! He isn't hanging on to them any longer than best matched platelets...nothing new. I was praying they would be 80k! but then I just knew they were around 17k! I sometimes wished I couldn't guess them! I wasn't even trying....it just popped into my mind. I know...its a God thing!! It happens all the time.
Nicholas really enjoyed the motorcycle ride! There were around 60 there and the donations were many! Thank you all so much for everything! I'm still amazed at the turn out with only a week to plan it! It was fabulous! Nicholas was the star that is for sure! He pulled off his glasses, doned his sunglasses and posed for photos! A couple of guys gave Nicholas and Spencer rides around the parking lot and they really enjoyed that! I think Nicholas' most fun was a blondie named Jennifer! He was fighting her husband Tom over her and I think Jennifer absolutely loved it! It was too cute! He gave her a bag of candy and she forgot it! He asked me why she didn't get it! I told him he was suppose to leave it for her....not take it back!!!! That was funny too! He plans on giving it to her next time he sees her! Ha!
Pray for baby Makenzie, a local with cancer. Pray for all the children.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, September 20, 2007 7:27 AM CDT
Hello,
The boys are doing ok! Nicholas is getting low on platelets as his mic-key button dressing had quite a bit on it last night! He fell and scraped his knee and leg but it didn't bruise much! It must not have been a hard hit! He wants to play and do so much! He tires really easily, gets out of breath fast, and of course turns bluish around his mouth but that doesn't stop him from trying as soon as he is rested!
I took Spencer and signed him up for Boy Scouts! Nicholas asked why he couldn't join too! I told him I'd take him and see if he could sign up too! He was thrilled! Spencer is a Tiger cub and Nicholas would be a Cub Scout! He was so thrilled last night! I don't know how on earth we are going to fit any more activities in our schedule but they did say that it isn't required to attend everything! Thank goodness! I'm tired just thinking about it!!! Ha! Spencer woke up with a sore throat this morning so pray he doesn't get strep again!
Praying for miracles. Rem Haylee, getting ready for bmt, James, needs a perfect match as well for bmt, Kim needs prayer too.
Blessings and Bear Hugs,
Donna
Tuesday, September 18, 2007 7:21 AM CDT
Hello,
Nicholas and Spencer are both well and rotten! Ha! They had a great weekend with Nicholas putting off his homework as long as possible! We barely finished it before Ms Trish got there!
Yesterday, I had to take him back to get his left hearing aid adjusted! They have to make it bigger, it keeps slipping out and I can hear it rining all the time. We constantly tell him to push it back in! Aggravating him to pieces! They had to send it off to make it a little bigger! Hopefully, it will work then! After that I took him to visit his class! They were thrilled to see him and he said, "I'll answer any questions you want to ask!" They did! They asked lots of questions! He showed them his mic-key button and answered what his favorite thing to do was, if he liked football, wrestling, different cartoons, what grade he would be in if he attended school, what his favorite food is, why his hands look like that, what that thing is in his neck, what his favorite sport is, and how old he was! They were so curious! He stood there and just answered the questions and acted so cute! His teacher, Ms Sturgill, was so happy to meet him and invited him back any time! I explained the marrow issues and that he had to have platelets every Friday and red cells every three weeks. I'm sure they could have cared less about the medical stuff but just wanted to know about him! That was good! They were all trying to find something in common with him. It was too cute!
He then, watched a little program, "Charlotte's Web" that he thoroughly enjoyed! Then, we visited Spencer's class and watched him work! Spencer was thrilled to see Mamaw too! We took her along for the ride and kept her out all day! Nicholas missed photo day but hopefully, we can get him back there on make-up day! Hopefully, it will not be on a Friday!
HLA type specific platelets....that is what Dr K wants to try next, just to see if he will hold on to them longer. It may or may not work...we will have to do bloodwork during the week to find out. They had some available for yesterday but I don't want to transfuse him if he doesn't need it! Hopefully, there will be some available on Fri! If not, then we will try next week....
Nicholas' trach culture grew E. Coli!!! Have you ever heard of being colonized with E. Coli in your lungs? If so, please let me know! Dr K said it was common with trached children! This is the first time he has ever tested positive for E. Coli! I was horrified! I cut out all meats! He looked so pitiful and asked, "What am I going to be able to eat then!?" He wants his salmon patties, steak, hamburger, cheese, chicken, and anything else he could possibly think of! Dr K said to let him have whatever he wants, that he was probably colonized in his gut with it and it was probably coming from his throat! I gave him his salmon patties back! He is happy now!
Please pray for all the children and adults suffering from many types of cancer and sickness. Pray for all the children in transplants......too many in bone marrow failure. Pray for the families as well.
Miracles, Blessings, and Bear Hugs,
Donna
Sunday, September 16, 2007 4:58 PM CDT
Hello,
Nicholas did well with both transfusions! It was just a long long day! Nicholas was exhausted and so were we! We are going to try HLA Matched type platelets next week to see if he will hang on to them longer. Don't know how available they will be and if he will get them all the time but we will see how it goes.
Thanks to Larry Baker for getting the motorcycle ride up and going for Nicholas. That is so precious! This is the first one and it will be an annual ride from here on out! Thanks Kim for all the hard work you are doing!
More later!
Miracles, Blessings and Bear Hugs,
Donna
Friday, September 14, 2007 10:51 AM CDT
just a note to ease your minds----
no update yesterday bc nurse didn't work; today, he has gone for transfusions.
sorry, guess you'll have to wait til Mon. for update.
pray that transfusions go well today.
love,
sissy bear
Wednesday, September 12, 2007 7:52 AM CDT
Hello,
The birthday celebration continues as he receives more and more gifts! Thanks Jo for the pkg! They loved it! He received Birthday wishes for SC, FL, and OK via phone on his special day as well! Thanks for all the cards, gift certificates, and ecards too!! I actually have lost count! I think everyone loves my baby!
He is doing ok! He is a little grumpy bear, I think due to his Hgb dropping. I can sure tell a difference! He demands and expects immediate results! He gets really frustrated if you don't! But for the most part he seems to be doing ok! He is pale and I'm sure will need both red cells and platelets on Fri. If his hgb drops like it has been doing he will be 6.something this time! This will be 3 wks since his last one so that is about the same.
I'm just in la la land most of the time, waiting for the next bomb to hit! My body is defintely telling me to get some rest but there doesn't seem to be any in sight! I thought my cold was better but it isn't completely gone and hit full force again yesterday! Along with a gall bladder attack on Fri! I was miserable but that seems better as well. Hopefully, we both can get back on track and enjoy the rest of the year! I'm looking forward to Christmas! Praying it will be good for all of us.
Spencer is doing good too! Dad too! We are back in our school routine! Spencer now has homework and that is different! Hopefully, he will get into the swing of things. He had a page of math to do last night and did it in no time! He is so precious! His voice just makes me smile!
A funny happened a while back. Papaw was sitting in a chair and Nicholas was hugging him. Papaw, hugging Nicholas on his back and sides, said, "I feel some fat on here!" Nicholas raised up and said, "Me too!" Papaw didn't know what to think, his face turned red, and we both just burst out laughing! TOOOOO funny!
Please pray for all the ones that are sick!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, September 10, 2007 9:44 AM CDT
Hello,
Arrr, me hardees! Ye had a grand ole time at the party! 9 little pirates and 16 big pirates enjoyed a wonderful day dressing up and eating the hard tack! HA! They did have a wonderful time! I was so happy everyone came to the party and just made his day! He really enjoyed it! The children had a wonderful time dressing up, digging for the buried treasure, and hitting the pinata for the loot! I think everyone enjoyed it! It was fun!
Nicholas, I cannot believe you are 9 years old! It has flown by! You have beaten all odds and still are! You are our super hero, our inspiration, and our life! You make every day a wonderful day and never fail to put a smile on everyone's face! Even at the hospital, lots of the adults waiting for their chemo treatments alway smile when you walk into the room! You have shown us love. You are the example of God's true love and we are blessed to have you in our life for a second let alone for 9 years! God is so wonderful! We thank Him for this time with you and Spencer too! He is very special as well. He walked into the kitchen and brought in a tray and asked for a plate of food for you! He carried it into the bedroom and served you breakfast in bed for your birthday! It was all his idea and told you he loved you very much! It was so precious! We feel so blessed to have such wonderful children. God is so good!
Nicholas continues to do ok...so far just low grade temps. He did receive platelets on Fri because they were just 5k and his anc did come up to 715 or so. His hgb was 8.3 and will have to have red cells next week as well as platelets. He is droopy at times but overall was just so excited this weekend! Today is his actual birthday! I'm sure we will be celebrating for a while!
I have tons of photos and will upload whenever I can! Thanks Aunt Glenda for the wonderul ship cake even if I forgot to add the characters on the top!!! It was still absolutely wonderful and tasted delicious too!
Remember all the children with problems and fatal illnesses!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, September 6, 2007 12:32 AM CDT
Hello,
Please pray that Nicholas does not catch this terrible cold or sinus infection that I have. I began feeling horrible yesterday and sneezing! Now, I'm either stuffy or nose pouring! I know TMI! I'll not go into all the snotty details! HA! Anyway, this will be short!
Nicholas continues to be ok! He was really nausous last night just like he has been through this last bout of sickness! I don't think my nerves will ever calm down! He could spike a temp at any time and there will be no rest for me from now on! His counts will be low tomorrow I'm sure and he will get platelets for sure, maybe red cells too. I'm praying his ANC has come up and he can fight off some of this on his own. Lord, we need another miracle! Overall, he hasn't been on any antibiotics since Jan! That is a record and I'm so thankful for the respite. I guess it hits hard when it hits though! Please pray for him.
Spencer is feeling some better but seems to have a cough now. He is napping at his mamaws in the evenings! He just cannot stay awake and needs his naps while he is feeling bad! He is so precious!
Please remember another family that has to take their son off the ventilator today. His name is Tyler and he has a brother name Ryan, they both have DC, which is another bone marrow failure dx! Pray for all the one headed toward transplant. Thank God they have an option!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, September 5, 2007 8:48 AM CDT
Hello,
Yes it is most wonderful to be home! I am exhausted but you cannot tell that Nicholas has ever been sick! He is rotten! and I'm so glad he is! He rebounds quickly...thank God! He gets sick just as quick though! He woke up Thurs morn was chilling and spike immediately! I loaded him up and to JCMC we went! Dr K wanted to pull his PICC immediately but he doesn't realize just how hard it was to get it in! I was so worried that they couldn't get another one in! We try to keep Nicholas as pain free as possible...meaning no shots, no ivs, no pokes, or hospital stays! HA!
Ok, they have more than doubled his nupogen to get his ANC to come up above 500. We will know more on Fri! Otherwise, no crowds, or company that is sick. I know he gets tired of being cooped up at home but I have a feeling it will be like this off and on from here on out! He just doesn't have any marrow left to work. His white count is getting extrememly low. We already know his marrow isn't producing platelets or red cells and I guess its inevitable that his white counts will drop as well. Its not pretty! Its heartbreaking. We didn't take him to church this weekend. It was the Davis memorial but he did get to go to Mamaw and Papaw's for a wondeful dinner! Shall I start naming the feast? Nah, it may make you hungry! It was yummy! Ham, roast, chicken n dumplings, and all the trimmings....etc! HA! Just had to!
I'm probably taking a chance having a birthday party but hopefully, we can have it outside......or under the carport if it rains. He wants a pirate birthday! I've found lots of decorations and hopefully it will he best one yet! He is so excited and counting down the days! Please send him a card, 11824 Lyons Fork Road, Coeburn, VA 24230!
Spencer is enjoying school and smiles when I ask him how it was that day! He is doing the PALS testing this week and next. He is really stuffy nosed and I was worried he is getting sick! He was running a temp though. He is so sweet! He was the sweetest he has ever been to Nicholas the other morning....saying, "How is my precious brother this morning?" He was kissing his head and Nicholas just reach up and hug him! Of course, I ran and got the camera and they repeated it for me! It was too precious for words.
Casey, You are so sweet! Thanks for the photos, cd and cards! Wow, you go above and beyond! Thanks for your friendship and your thoughtfulness! The "cand sastle" was absolutely marvelous! I'm so thankful that you took Spencer and he was a part of that!
Please pray for patience, guidance, wisdom, knowledge, courage, acceptance of God's will, and strength! Yes, we need it all! and MIRACLES of course! Remember, Sandra, Dylan, Abel, John, Will, Jo, Jacy, Henry, and so many more......
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, September 4, 2007 3:05 PM CDT
I didn't see an update from Donna, so I was very much concerned. I called home to find out if anything were wrong or not. The nurse was 12:00 getting there, so I suppose Donna has not had time to update.
Nicholas has had a good day-no temp; still has some congestion. He is on Cefepime(sp?); I think that is the antibiotic I mentioned before.
Spencer woke up Sat. congested and low grade temp. Nicholas does not need that, since his ANC is so low. Yes, we still need a miracle. I confess that I feel guilty asking, after all the blessings He has given us. We are so blessed.
Thanks for all the thoughts and prayers.
love,
Sissy Bear
Saturday, September 1, 2007 6:24 PM CDT
Nicholas is home!!!!!!!PTL
He is thrilled to be home again! He is one happy "pirate"!
His bd is the 10th and he wants....excuse me....gets a pirate bd party with the eye patches, treasure chests, gold coins, swords, and all. I must say he is the most handsome pirate I've ever seen!!!!! Even with that mean, stern look!!! and telling me: "Sharon Ann! Listen here. I am totally fed up with Spanish. Don't speak any more for 2 months!"
To look at him, you can't tell he just came from the hospital, that his platelets were 40 yesterday, and that the Dr. K wanted to know if Donna wanted him transfused again today(he's coughing up blood again). With the washed platelets, his count doesn't go up as high. Does that mean more transfusions closer together? I am afraid that is what is going to happen. For how long? Only God knows.
The antibiotic goes directly into his stomach and is making him very sick. Again, after that wears off, he is a sassy, bossy pirate.
Keep praying for our little pirate as he rides on these rough seas.
Love,
Sissy Bear(Sharon Ann today!)
Friday, August 31, 2007 1:58 PM CDT
Sissy Bear here!
As I told you this AM he is feeling better, but is still in the hospital. He cried his little heart out when Dr. K told him he could not go home today.
Nothing has grown from blood culture, but something is growing in sputum; they will prob know what it is by tonight.
His ANC is 440; they have given him a double dose of GCF, hoping it will come up. If it doesn't, he is in trouble---meaning he can't fight off the infection.
They have him on a couple of antibiotics; pray these work bc he spiked a temp on the others which means he is resistant to them. This antibiotic is the last one left and it does not have good clinical trial results for children with problems like Nicholas has. They gave him a dose of this in Cinn when we left for MA and I watched him all night. Believe me, it is scarey, especially after reading the report. I can't remember the name of it, but the doctors are using it a lot now. I suppose it works for most.
Nicholas will have to have another central line asa he is able to get one. That means another trip to Cinn.
But.....one step at a time, right? One day at a time....
Take care.
Love,
Sissy Bear
Friday, August 31, 2007 9:44 AM CDT
Sissy Bear here!
I talked to Donna at 7:00 this morn. She said that Nicholas' transfusion went well; his temp is down; he is doing better! PTL
I don't know if he will get to come home this eve or not; I'll let you know later.
keep praying.
love,
Sissy Bear
Thursday, August 30, 2007 3:40 PM CDT
Sissy Bear here! Good yesterday, but this morning Nicholas got up with chills and temp of 102. Donna took him to Johnson City Med. Center where Nicholas has been admitted. They are going to give him different antibiotics. His platelet count is 9, so platelets have been ordered and he will be getting those within a couple of hours. Pray the transfusion goes well and the antibiotics will work. Bless his little heart and Donna's, too.
At least we are home and don't have to drive 18 hours! That is something positive I can say at this time.
Will keep you posted as I hear.
Keep praying,
love,
Sissy Bear
Wednesday, August 29, 2007 9:46 AM CDT
Sissy Bear here! all is well at the moment at Boggs house.
The nurse's grandma died, so Donna is home til she returns. I'm sure boys and Donna don't mind her being home.
Nicholas requested fudge, so guess what I made last night?
Fudge! right! He is the only child I want to see bossy and sassy! He is the only one who gets by with it, too!! Oh, well, that's life.
Thanks again for thoughts and prayers.
Love,
Sissy Bear
Monday, August 27, 2007 8:59 AM CDT
Nicholas woke up on Saturday with another temp! I was worried about him as he slept in a lot longer than normal but also knew he probably needed the rest! After his bath, his temp has been around 100d all weekend. He did have to have platelets and packed red cells on Fri.....again!
I'm really facing the facts and pray that he won't need as many when he gets over this. Dr K wasn't very encouraging at all on Fri! He doesn't think the PICC will last very long and that it will get infected and Nicholas will become septic. He is very blunt without any bedside manners at all but I know him by now! He just has to tell me the worst case scenerio! I'm not a rocket scientist but I have figured out all the possible things that could go wrong! I have too vivid a imagination not to have figured it out by now! I do not bury my head in the sand....more like in the medical research field!!! I'm crazy and that helps! HA!
Nicholas continues to feel great for the most part and tells everyone what to do and when to do it! He is so funny! He got mad at Sissy Bear because she needed to take a nap yesterday and he couldn't go to her house! He told her he wouldn't be there for two months! Yeah right! That lasted for oh.....a couple of hours then he called her!!! He and Spencer did get to spend some time with them yesterday evening!
We had the Strouth-Lane memorial yesterday. We didn't have the picnic on Sat and everyone really missed it! I know I did but I didn't have the energy for it though! Spencer had a ball with his little cousins, Landon and Kolton. It was wonderful to see everyone and hopefully, next year will be better! It was wonderful to be home and around family. Everyone was happy to see Nicholas so well too! Oh, we thank God for miracles..the little ones are wonderful too.
Pray for Mary Bear as she is having knee surgery today. Rem Dylan S, he is needing lots of platelets tx as well. Pray for all the children we see at St Judes. There are so many!
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, August 23, 2007 11:05 AM CDT
Hello,
Blood cultures are now negative! Another reason to thank the Lord! Nicholas continues to be happy and really looked forward to seeing his teacher yesterday evening! He met her outside! She brought him his books and they went over his assignments! I'm sure he will NOT be looking forward to homework but seemed pleased to see her at least! He is just the sweetest thing! I love him feeling good and so perky! He is rotten! Yes, he has us all wrapped around his little finger! I sure wished I could bounce back the way he does! I have a feeling it will takes us months to get back to normal! Ha!
Spencer really enjoyed his first day back to school! He brought home lots of make up work and told everyone he was doing his homework! I pray he keeps that enthusiasm!
I wasn't able to take many photos so please email me your pictures so I can put them in a loop! Teresa, I copies some of yours...if you don't mind! Haven't had time to look at the rest!
Please pray for all the ones having bmts...they really need your prayers!
Blessings and Bear Hugs,
Donna
Wednesday, August 22, 2007 11:07 AM CDT
Hello!
Yes, we are home! PTL! I could have kissed the ground! Even a messy house looked absolutely wonderful! Nicholas was so happy to see "Baby Black Girl!" He missed her so much! He cried at the hospital saying he missed her as well. This is the first time he has ever cried and wanted to go home! One day he even asked, "Will I ever see home again?" Broke my heart but I reassured him the antibiotics would kill those bugs and he would feel well enough to go home! I guess on Monday when we went to the hospital, he just slept all day, didn't do anything but sleep. He was so sick! He was vomiting and coughing continuously! The Zofran really worked wonders for his nausea! Wonderful med! To say the least, we are totally drained! I'm still functioning but it sure takes effort! Jeff drove for 18 solid hours to Cincy! He was totally exhausted and I'm sure it will take a week to recoup! I'm not sure if we will ever recover fully! Ha!
I'm so thankful he now has a PICC line, I knew it would be hard to get one in and they succeeded! They are NO. 3 Pediatric hospital in the USA! The dr in Maine even recommended them to put in the PICC line! Thank God they have a PICC team, even one on call all the time! I just wished we could have kept his c-line! We were on antibiotics but they weren't working well enough to kill the bugs! We told Nicholas that cooties were living in his c-line and we had to "boot the cootie's" out of his system! That made him smile a little! He did really well with the extraction of the c-line and the insertion of the PICC line! He is a trooper that is for sure! Spencer was worried about him and would help him do things as Nicholas is still sore! Pray this PICC line works long enough to heal his little body! He is really tender in his chest and the sonogram of his heart showed no bacteria there! We are so thankful for that! The fevers ate up his red cells and platelets fairly quickly and he has had several tranfusions! I shutter to think what the future requirements will be for transfusions. Each time they are dealing with infections, the marrow takes a hard hit but never fully recovers. With only a few cells working anyway, I'm sure it will be even tougher to recover. This is all logical thinking, but I know God can do the impossible! I still believe in miracles!
Nicholas is back to his little bossy self and I'm so glad he is! We'll take bossy over sick any day!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, August 21, 2007 9:44 AM CDT
Sissy Bear here in Cinn.
Nicholas is getting a dose of antiobiotics; then we are on the way home. He is back to being Nicholas. PTL
This is the 2nd attempt to update; 1st was more detailed. Just a line to say thanks to all Camp Sunshine families, volunteers, Jen, Casey, and Nancy. You are the best. Thanks for being so good to us.
Should be home tonight around 6:00.
Love,
Sissy Bear
Saturday, August 18, 2007 12:32 AM CDT
Sissy Bear here!
I know you are wondering about things, so here goes!
Surgery went well yesterday; Jeff says Nicholas is himself today. PTL
Next stop is Cinn. for PIC line; Mon. is the goal. We will know something later. Maybe Donna will update after she knows for sure what and when.
Re Spencer; earache last night! He saw the Dr. here at Camp and is now on antibiotics. Maybe we will get some sleep tonight.
Other than that, we are having fun!!!!!??????????
love,
sharon
Thursday, August 16, 2007 6:15 PM CDT
Hello,
Our main goal is to get Nicholas well and we have had to make some tough decisions! We haven't gotten a negative blood culture as of yet and have decided our best option is to remove his central line. That will be tomorrow at 11 am. The plan is to get antibiotics in is his system for a few days and then try to get a picc line in. Hopefully, we can go home with that and get more antibiotics until he is fully cleared. He is feeling so much better! He looks better this evening but has to regain his strength! He is still running a low grade this evening but hasn't had a temp today for the most part! He seems to be developing a cold though. His ANC is very low and we have had to give nupogen today as well. His platelets are down to 18k today and he will have tx tomorrow before the procedure. Pray he does well through all of this!
We couldn't do this without our friends! Thanks to all who are making this stay possible. Thanks to the Youngs for the visit today and the gift! He really like it and laughed through out the TMNT! We also enjoyed a visit from Sissy Bear and Spencer! Oh, I missed my baby so much! Casey, one of the volunteers came back with his sister to camp just so he could be with Spencer! That was so precious! This group for FA is absolutely the best volunteers in the world!! We LOVE YOU ALL!
Continue to pray for my baby as well as all the others that are suffering!
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, August 15, 2007 7:06 PM CDT
Hello,
Nicholas spiked again this morning around 5 am. It wasn't as violent and temp didn't get as high but we still do not want that to happen of course! He has run low grade most of the day! He did get a wonderful surprise....a visit from 21 Camp Sunshine volunteers! He broke the record! They put them all in a play area and then wheeled Nicholas into the room! He smiled from ear to ear! He was so happy to see them but just couldn't hold out for a long visit! He curled up under the blanket and I guess that was his signal that he was tired! He has had some energy today but no where near what we want! Little spurts but we will take them as well! WE will definitely take any improvement! Keep praying really hard!
Leaving it all in the hands of the Lord!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, August 14, 2007 7:33 PM CDT
Nicholas is on the mend! He is coughing and very nausous but after a dose of Zofran sp? he is doing some better. The temp is normal for some of the day and pray that it doesn't spike tonight! He spiked again last night to 104d! He told Joel that he had a rough night! Joel, Hallie, and Michael came and cheered him up today! He was totally shocked to see them! They brought him a huge card that everyone signed for him! Spencer drew a big bat on the back with a huge smile on its face! It was so precious!
He is now on Vancomycin and Cephapine without any side effects! YES! That was the antibiotics that was needed to fight these infections. Hopefully, tomorrow we can head for home. He cried today wanting to go home. He is really missing his Bubbie and Sissy Bear!
We will be doing another cbc tomorrow and will probably need platelets again! I'm really bummed about that but know his system just cannot fight and produce the needed platelets and red cells. He looks much better after his red cells! Pray for all the others that also got sick at camp!
Camp was wonderful as usual but I do wish that Nicholas would have enjoyed it more! I'm sure Spencer is having fun! I miss him so much!
Homeward Bound!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, August 13, 2007 1:58 PM CDT
Sissy Bear here at Camp Sunshine, Maine
Nicholas is at Portland Hospital bc temp of 104. He is receiving platelets at the moment; next red blood cells.(just got platelets Wed. in Cinn.) He has a central line infection. His temp has dropped to 101; he is sleeping. After getting test results, they will decide what med to give him. Please pray for Donna and Jeff; they have been up most of the night, left at 2:00 AM for hospital.
I am here with Spencer, trying to keep things as normal as possible for him. He is missing his mom. We don't know when we will be home as of today, hopefully start tom., but I seriously doubt it. I expect them to admit Nicholas and keep him til his temp. drops.
Please pray for the family.
Love,
Sissy Bear
Sunday, August 12, 2007 2:47 PM CDT
Hello,
We did arrive at camp but against drs orders! Nicholas is suffering from a central line infections with high fevers but with a determination to enjoy at least some part of each day! He is on antibiotics and our wonderful pharamist sp? delivered them while we were on the road! Yes, miracles do happen! We knew that camp would be the best medicine and for the most part it has been! Smiling for real at Alessandra! She makes him smile every time and I see those love struck eyes! He will tell me he is fine even though I know better! He is one determined little fellow! The drs have been wonderful to help us while we are here as well....advice mostly at this point but very supportative of our decisions! Nicholas does get really droopy toward the evening and he has even figured out a way to get better faster! "Mom, just give me two bags of antibiotics tonight and two in the morning and then I will feel like dancing!" Yes! One sharp little cookie! He is determined to dance tonight! Hopefully, he will feel up to enjoying the dress up night! I think he is going as Count Nichula! We'll see!!
Lots to discuss lots to update, but we did have to get platelets again in Cincy on Wed! We have to get a cbc tomorrow to see where we are and will definitely have to have another plt tx before we get home. I think the fever is eating them up! Please keep praying for him and all the others here! Lots of new people here at camp and we definitly miss you Charisse!!!!
Hectic is the best word so far to describe camp! Wonderful, fantastic, great, are Nicholas' words I'm sure! Tired and busy are Spencers! Sissy Bear is staying busy toting Nicholas around or should I say following him here and there! Dad, is ok! We are all working together to get everything in working mode!
Hanging in there but not without your prayers!
Thanks,
Donna
Monday, August 6, 2007 7:39 AM CDT
Hello,
Nicholas' transfusions went well with only a couple of hives...He was very perky after the red cells! Singing, pestering the nurse, playing jokes on her, laughing, and talking non-stop all the way home! I could tell a huge difference! If only it had lasted....Sunday, he became really droopy and face started flushing, he was running to bathroom. His temp went to 101.6 this morning at 4 am! His fever broke after that and he woke up feeling pretty perky! He was awake at 4 am and wanted to know what time it was! I told him and he didn't know what to think! He said, "Mom, I didn't know I was going to wake up this early!" He was asking for water. I gave him some more medicine and then he was really nauseated and I had to vent his tummy! The gas rolled out the vent tube! I crawled in bed with him for a while and he said, "Mom, How did you know that was what I wanted you to do? You read my mind!" I kissed him and told him, "I know you!" He settled down, after lots of sweet little kisses and his hot little hand patting my face, and then went to sleep. I checked him a couple hours later and his fever had broke. I'm hoping it was just viral and he is over it all! We cannot go to camp if he is sick.
When I lay down with him, he told me he was scard about his g-j tube change! I told him it would be overwith before he knew it! He said, "I'm not going to cry but you tell me everything they are doing, ok?" I told him of course! How many times does this make? I have no clue but we will go over it every time he asks! He is so brave and getting braver each time!
Spencer is having a grand ole time with his dad! He went to work with him again today! He says he isn't looking forward to school! We'll see how all that goes when we come back from camp! Yes, he is missing school and so is Sissy Bear! I'm not sure how much they will actually miss school but reality is.....they will have to go back as soon as we are back! I'm a basket case to say the least!
Keep praying for all of us. Pray for my Uncle that has leukemia and his family. Pray for all the children and all their families that are going through treatments or newly diagnoses. Pray for all the families traveling to Camp Sunshine.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, August 2, 2007 10:40 AM CDT
***check out the new photos!
Hello,
I just heard my babies sweet voice...."You're one of the best Mom's I've ever had!" I laughed! I told him I was his only mom! He said, "I know!" He is so funny!
He is getting more and more tired! He will definitely need red cells. Otherwise......He seems sort of congested! He is a little pale..more at times than others but overall, he is ok. He will not talk about Camp Sunshine because of the g-j tube change that we have scheduled. He is petrified! He is talking about it and said this morning that he will try to be brave! God love his little heart! He is the bravest little guy on earth! Please pray for him and me, as I have to talk him through every step!! I ususally hold my breath until its all over with! Its a very intense hour or so!
Pray for all the children and their families! There are so many that need prayer and encouragement. Its very heart breaking and definitely for the strong at heart! Only other families that are going through life threatening disease understand what its like. Its a continual clawing your way out of a hole, and seeing more and more piled on top you....horrible! But with God on our side, our storms calm, our faith in God calms those fears and brings peace to our soul.
He is the Master of the sea.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, August 1, 2007 2:17 PM CDT
Hello,
Nicholas is a little junky but seems to be ok overall! He is happy as long as he gets to go down to Sissy Bears for a little while each evening! Spencer doesn't like for him to go but is trying to understand the situation. Nicholas needs a change of scenery every once in a while! He loves his little special trips that doesn't involve hospitals or drs!
Papaw's 80th birthday is today! I'm so thankful we have been blessed to have him for so many years! Lord willing, we will have him forever! I can't imagine life without my parents around. Don't even want to go there!
We are still packing for camp sunshine! I don't think I'll ever get finished! I've barely got enough supplies to pack up and am fighting with the insurance for everything! Goodness, its a hassle! Hopefully, we'll get everything ironed out shortly! I may have all my hair pulled out but this too shall pass......
We will be going for platelets and red cell transfusion on Fri! I keep thinking today is Thurs! Pray for perfect platelets! Also, pray for Skylar-Jade as she is critical right now. Too many dying from cancer that is for sure!
Keep praying for all the children and adults too. Pray for my baby...you know we need a HUGE miracle!
Miracles, Blessings, and Bear Hugs,
Donna
Monday, July 30, 2007 9:02 AM CDT
Hello,
We had a full plate this weekend! From new tires to celebrating Papaw's 80th birthday, we went full force! Nicholas is getting spoiled! I spoke to him earlier and he said, "I was wanting my Momma this morning!" Awwwwww, how precious! He very apprehensive about getting his g-j tube changed out! That will happen before camp sunshine and he knows it! He is a little worry wart and he calls his Mamaw and tells her not to be one! Ha! He needs to practice what he preaches! Too funny!
He really enjoyed seeing everyone this weekend! We all miss our family that we haven't seen in a while. Spencer really had fun with Isaiah and I think they had too much fun! I just found out he was hitting my nephew with a little chain! Yes, I think that was too much fun! I wonder if he will tell me the truth now? I had told him not to hit anyone, but that may have happened before I told him!! Now, my feathers are ruffled! Oh, the joy of growing up!
Praying for all the ones with cancer! Too many! Praying for all the children going through treatments and transplants!
Blessings and Bear Hugs,
Wednesday, July 25, 2007 4:57 PM CDT
Hello,
I'm really happy to announce the 59th Anniversary of my parents! We celebrated today and enjoyed lunch at a local restraurant, those of us not working that is! My nurse is sick today and I'm so happy I was there and the boys attended as well! We had the waitress to bring them out a special piece of cake! I'm so proud of my Mom and Dad! Wow! Lord willing they will make it one more year for their 60th and we'll have a big celebration! Dad will be 80 years old on the 1st! We are so blessed with wonderful Chrisian parents and they are pretty healthy! Thank God for praying parents! I know I wouldn't have made it through all of this with Nicholas if I didn't ALWAYS know that they were praying! I can always count on them!
You know, I guess that is why I've learned long ago to always pray about everything! I had a wonderful example set before me! They have never been deceitful! Never lied about this or that! They have always been a perfect example and I know they aren't perfect, but they have shown us how to handle everything with prayer. If someone bad mouth them or told lies on them, I know they would be so hurt and yet, they would pray! I guess I'm saying all of this to say something else. I'm going through a very similiar situation and I desire your prayers. I will do as I've been taught, go through all the different emotions and then pray for that person as well!
On to Nicholas, he is showing signs of low platelets today. I can see petechia on his face and ears. Overall, he is doing fine though! He is still rotten to the core, of course! Spencer was so happy Mom was home today! He smiled really big and just melted my heart! I love my boys that is for sure!
Praying for all the children going through treatments of some type! Pray for the families as well.
Praying for miracles,
Donna
Tuesday, July 24, 2007 1:23 PM CDT
Hello,
Nicholas continues to be about the same. He is rotten to the core and wants to go somewhere every evening! I think we are a little spoiled! Nah!
Pray for Sissy Bear, as she had carpal tunnel surgery this morning. I know the pain that she will be going through a little later and she needs prayer!
We have lots more going for testing and really need your prayers also.
Quick update! More later!
Blessings and Bear Hugs,
Miracles......
Donna
Monday, July 23, 2007 1:59 PM CDT
Hello,
Nicholas received his much needed platelet transfusion on Fri! His platelets were down to 7k and his hgb was 10.4!
He is hanging on to the red cells at least. Please go to the red cross and donate. I'm sure there are more than just Nicholas in need..
Marsh Blood bank was begging for donors as their supply was low the other day! If I had the energy, I'd go donate blood but I'm sure I'm borderline right now! Thanks for all the strong healthy donors out there that can donate regularly! God Bless you!
We enjoyed a picnic this weekend! Food was good, weather was wonderful! It was enjoyable!
Praying for all the ones suffering today! Too many with cancer! To many being diagnosed, too many going for treatments. Pray for all the ones hurting........God knows each heart and what each one needs.....
Blessings and Bear Hugs,
Miracles,
Donna
Thursday, July 19, 2007 8:01 AM CDT
Hello,
Happy 50th birthday to Lena! We surprised her with the birthday song and she loved it! She just about cried! Just about!!!! Nicholas had his passey muir(speaking valve) on and his voice was really loud. His laughter is music to my ears! I'm sure the "I love you Lena" was music to hers!
Sissy Bear invited us to dinner last night. Nicholas wanted some butter on his mashed potatoes and I told him that Daddy Bear did not allow any butter in his house. Nicholas whispered to him, "Just give me all you have and I'll eat it all, that way you won't have to worry about it anymore!" So funny!
Please remember all the children and their families. Pray for Aunt Louetta, battling bladder cancer now and also an Uncle Wayne is battling cancer as well! Too much cancer in our family!
We need lots of miracles, but we still have so much to be thankful for!
Donna
Tuesday, July 17, 2007 6:44 AM CDT
Hello,
One funny I wanted to share, the boys were sitting at the bar and eating jello. Spencer said he didn't like strawberry jello! I left some on a plate and he tasted it and then decided he did want some! He was aggravated that it wasn't orange! He and Nicholas were talking and Spencer said, "Now, I've eaten orange jello most of my life, even when I was a baby!" So funny! Then Nicholas was telling him how to try a new food! "One day, I didn't know I like something and I thought...If I don't try it I won't know if I like it! Then Guess what Bub! I tried it and I DID like it!" At this point I just had to laugh! They are hilarious! Spencer thought I was laughing at him and puffed up! Oh, the joys of growing up!
Spencer spent the day with Mamaw and Papaw! He was filthy! I took one look and said, "Someone has had fun today!" Yes, playing with the kittens and their dog! He really enjoys himself and I think he needed that extra special loving that only comes from a Grandmother and Grandfather! Nothing like the spoiling and loving from them! I think it helps Mamaw too! She has been having some problems and it is breaking our hearts. It could be some of the meds she's on but it could also be the first stages of Alzheimer. They have put her on a memory med now. I can tell a "good" difference. One thing she doesn't forget is the tune to songs! She LOVES singing! Please remember her in your prayers as well.
Pray for the Brad Hale family, he had a bleeding stroke and passed away. He is a brother to Sissy Bear's sister-in-law. Pray for all the children going through testing and treatments of some type and the families.
Miracles,
Donna
Monday, July 16, 2007 12:02 AM CDT
Hello,
Another transfusion down the vein! Actually, two of them. Nicholas' HGB was 7 and platelets were 6k and he needed both! He was so fiesty and no one could tell his Hgb was so low! He was pestering me and was so cute! I love those moments. Heart moments to carry forever in our heart and minds. God gives us those special moments. Like the hugs and kisses that only Nicholas and Spencer can give. Precious beyond words! Don't you wish you had some? Ha!
Camp Sunshine is forever in our thoughts these days. I'm arranging a platelet transfusion in Maine! Its scary! Every week is getting to me. I realize more and more the significance of going each week and the anxiety of reactions is taking its toll on me. We are surviving but at least we are doing that! Nicholas is just happy all the time, oblivious to the severity of it all. That is the way it will be! I just answered the phone to a sweet little voice saying, "Will you bring me some push-ups?"
That precious little voice with his passey muir on! Singing most of his words......preciuos!
Back to camp, I have to start packing or I'll never get it all packed before we leave! Too much to pack! Too much to think about! I'm going to put the photo link back up during this preparation time for camp! Just to let you see what all is at camp! My digital camera is slowly dying....no display! Bad time for no camera!
Spencer wants so bad to help me pack right now!!! Too funny! I told him to go help Sissy Bear for I will be packed before her! HA! Yes, she is going with us! She couldn't tell Nicholas no! No one can! Spencer either!
Please remember Marsha R, she has bronchitis and had a heart attack during the forth! She really needs a healing touch right now. Remember her husband and young son as well. I know they are scared and could really use the prayer. She is such a sweetheart and very dear to me.
Pray for all the children and their families.
Blessings and Bear Hugs,
Donna
Thursday, July 12, 2007 8:11 AM CDT
Hello,
Nicholas is doing pretty good this week! He doesn't seem to be as tired as I thought he would be! That's a good thing! I think he is tolerating the low counts better! His little body just gets use to it and self adjusts! God is really an awesome God and we are unique creations! One that just cannot be duplicated! God is good all the time!
Spencer is really enjoying himself! He is his Dad's little shadow! and loving every second of it! He is being a little helper and loving the dirty part of it! He was dirty from head to toe and had to be scrubbed the other night! Tooo funny! Dad said one of these days he won't want to go with him so I think he is enjoying his little helper's company as well! I'm sure Spencer is keeping him laughing! He is a hoot!
Please remember our neighbor Maureen, Russel's funeral is today and she really needs prayer. Pray for all the children going through treatments! Pray for us as we travel back and forth each week for txs!
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, July 10, 2007 6:50 AM CDT
Hello,
Goodness gracious I do not know where to start! Ok....Fri, transfusion day....his platelets were down to 6k and his hgb was 8.1 dropping 2 points in one week!!!! He did receive platelets with about 3 hives but they were mild. He will get both platelets and red cells this Fri. He is already getting very pale. It will be a long day!
We left the hospital and went to Watauga Lake for a couple days of fishing, relaxing, rented a boat, and the boys really enjoyed the "beach" on the lake! We met a wonderful family from Roan Mtn! Of course Nicholas walked right up to her and asked about her dog and they became fast friends! The boys loved the boat and loved driving it! We all had a wonderful time! It was a nice break! One that definitely needs repeating! HA!
Another month until Camp Sunshine! I'm dreading it for some reason......working out the transfusions going and coming back home....wondering about his needs during! I know him, he pushes himself and then crashes! He is looking forward to CAMP! The wedding is called off! He said, "You know I can't get married until I'm old enough!" Hmmmmm! I don't think he has told Alessandra yet! This is the plan until he lays eyes on her!!!
Praying for Skylar, Abel, Julia, Roy, Jordan, Sophia, Westin, just to name a few that need prayer....There are so many over at St Judes in JC and so many adults that go for chemo! It's heartbreaking!
Miracles, Blessings and Bear Hugs,
Donna
Thursday, July 5, 2007 5:24 PM CDT
Hello,
The boys really enjoyed the cookout at Sissy Bears! and the fireworks were exceptional this year! Nicholas loved them! Spencer found a little friend to play with and all they saw was dirt! He was so tired last night! Overall, the 4th was wonderful!
Nicholas continued to cough up blood some but it diminished today. We will go for a platelet transfusion tomorrow so be praying for a hive free one!
More later! Too tired to think at the moment!
Hope your weekend is a great one and keep praying for my little guy. Pray for all the children going through health issues.
Miracles, Blessings, and Bear Hugs,
Donna
Tuesday, July 3, 2007 11:46 AM CDT
Hello,
Nicholas' temp has been down and his hands and feet have actually been cold! He is still coughing up some blood, not much but enough to cause my heart to ache! He was on the droopy side and just a little grumpy last night! He just wanted his way as usual! and just didn't feel like tolerating his brother not complying to his wants!
He seems fine otherwise today. Michelle said he isn't droopy today just coughing quite a bit of junk up! and its still bloody. I do not like my babies sick! Who would?
Spencer stumped his toe yesterday and had it propped up when I picked him up! Too funny...but it was hurt and he had bent the nail back and it was bleeding some! Sissy Bear ran his legs off yesterday and he slept late this morning! He didn't want to go back to her house today! Now, that was funny! He is still pouting at her for taking him to the dr! Yes, he holds grudges! Nah, he isn't too mad at her! They both love their Sissy Bear!
Please remember all the children......
Miracles, Blessings, and Bear Hugs,
Donna
Monday, July 2, 2007 9:11 AM CDT
Hello,
Please remember Nicholas in your prayers as he is chilling and running a low-grade temp. I changed his trach on Sunday and there was a string of blood on it. Now, he is coughing up some blood yesterday as well as today. He has been really junky for the past couple of days but his lungs do not sound too bad; like pneumonia or anything. Hopefully, we’ll keep it under control and him out of the hospital.
I knew he was too droopy and going by my gut feeling, we didn’t make it to the St Judes Benefit singing. It was raining and I knew the dampness would only make him worse! He wanted so badly to go and see Adam sing! We did meet The Crabb family and Nicholas connected with Adam immediately! I do not know what Adam is in need of but due to Nicholas’ previous actions, Adam needed Nicholas hugs and inspiration in some way. We may never know but Adam does and so does God. It was a tremendous blessing to be in a room with 3 miraculous healings…..three transplanted, three with cancer, and three healed! Wow! God is so good! Lauren is absolutely beautiful, Clay is a pure joy to see running and playing, and Westin is adorable, talking trains with Spencer! So precious! It was a wonderful feeling just to be a witness to God’s mercy and grace. Nicholas did get to speak and I asked him what he wanted to say..He said, “I want to talk about Jesus!” He did! He said, “I just want to tell you about Jesus Christ!” He said something about Jesus dying on the cross and “the blood was for all of us.” I didn’t know what to think and didn’t have a clue that he was going to say all of that. It was precious though! Then, he said, “And I’d like to welcome Adam!” Adam came to the mic and asked prayer for Nicholas and said, “God’s got His hand on him!” God has always had His hand on my baby, from the very beginning. And then, Nicholas sang, “You are my sunshine!” to all the St Judes families. It was precious.
Nicholas also sang “You are my sunshine” at VBS and dedicated it to Brianne. Of course she cried! He is a little ray of sunshine! Too precious!
Spencer lost another tooth last night, his fifth one! Bless his heart, he was scared but it didn’t bleed much at all! He showed Sissy Bear his “gap” and his dollar the first thing this morning! He sounds so precious this morning! I missed my babies after being with them all week! Tons of hugs and kisses!
Remember all the children, Sophia F, dx with cancer and at St Judes, and all the others newly dx! It’s horrible and the treatments and options all hitting you in the face at once! Pray for Abel T, and I could just keep listing children and their families…..pray for all of them and us. We’ve prayed for a miracle and if we don’t get a miracle, then let us be a blessing to someone.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, June 28, 2007 4:25 PM CDT
Hello,
The boys are LOVING VBS! Nicholas is "triple smitten with Brianne" and just melts when she smiles at him. She helps teach the music and he falls in love with her every year! She took him home last night and he was in seventh heaven! I told him that she was married and he said, "Too bad, I'm not finished with her yet!" TOOO funny! Her husband is coming to the program and Nicholas is getting ready for a fight! He will just smack his wrist pretending it is a fist! He is so precious! He has had every several adults up in the top of the treehouse with him! It is so funny! I can tell a huge difference in him since last year. No stamina....no energy! He even had Raymond kicking ball every night but only once this time and then he quit and had to sit down on a swing for a while. Spencer is doing ok began by being bashful at first but seems to have recovered and enjoying himself!
We do go for platelet tx tomorrow. He already is showing signs of low platelets. Please pray for us!
Remember a couple of other children from our area that needs prayer. One with neuroblastoma and another with feet deformaties. Pray for all the children going through treatments of some type.
Miracles, Blessings, and Bear Hugs,
Donna
Monday, June 25, 2007 9:17 AM CDT
Hello,
Friday, Nicholas received his platelets and packed red cells. His platelets were 12k and Hgb was 7.3....He is now retanked, refueled, and singing up a storm!
He told Spencer this weekend ...."Spencer, you are more precious than a pine knot! Do you know that?" I have laughed everytime I've thought about it! He is so funny! Spencer has really missed him when he is gone through the week days! They have played and played!
VBS began last night so I will not hear...."What is today's date?" "How many more days to VBS?" Now it will be...."How many more hours til 6 pm?!!! Ha! They really enjoyed last night! Nicholas didn't take his eyes off the Bible Story teller! His group is so attentative! Precious! Spencer just woke up from a nap and was a little grumpy at first but finally began playing and enjoying it! Hopefully, he will get in the swing of things and actually perform for the community! He is already saying he doesn't want to go on Fri! Stubborn! Bless his little heart! He will be ok by Fri!
Praying for all the children going through serious diseases and treatments. Most are horrifying to say the least but somehow by the mercies of God, families come out on the other side! Stronger and a better respect for themselves and others. It takes time to heal. God isn't finished with us yet! Pray for Emmogean, Sissy Bear's mother-in-law, she is having thyroid surgery today.
Miracles, Blessings, and Bear Hugs,
Donna
Thursday, June 21, 2007 9:32 AM CDT
Hello,
Here I am asking everyone else to update and I haven't! Ha! I need to practice what I preach huh!? Oh well! Here goes....
Nicholas is ok for the most part! I have seen some droopiness but overall, doing ok. He is still a little rotten, well, a really about 100 percent rotten! I love it like that as I've said a hundred time before. I'd much rather have him sassy with sparkling eyes and impish than not! He knows he is cute! AND gets away with everything! He woke up the other morning and was asking me the difference in "Back Talking and being Sassy!" I couldn't help but laugh! Now, when he does either one I tell him and he has that "Oh no! I'm caught!" look! Too funny!
We will be getting platelets and red cells tomorrow! I think I'm getting tired! I just cannot think of my name! Ha! I'm thinking its been 3 weeks on the red cells and am pretty sure its this week...according to his yellow tone, its definitely this week!
Spencer is with Sissy Bear today! He loved going with his Dad though. I have a feeling that Dad is going to miss someone today! I think he is a lot of company for him! Spencer helped him lay tile yesterday! I'm sure Spencer had his little nose into everything Jeff is doing! I'm sure Dad has had a hawk eye out on him making sure he doesn't mess up anything! He watches every move his Dad makes and then tries to do things by himself! He is one determined little fellow and mimics every move! Not only his Dad but in everything he does! He is so precious!
Pray for all the new diagnoses! Too many with leukemia, blood diseases, cancers, and heart problems. Pray for the families as well.
Miracles, Blessings and Bear Hugs,
Donna
Tuesday, June 19, 2007 11:18 AM CDT
Hello,
Nicholas was raring to go to Mamaw's yesterday evening but I still had a terrible headache and didn't feel up to it! When he gets something in his mind, its very hard to get it off! He will continually ask! Then, when he realizes that he doesn't get his way, most of the time he settles down! Sometimes, he pouts! He is rotten!
He was using the phone yesterday to call me but he also called Marci! She told him he was going to get into trouble for calling her long distance. He said, "I have nothing better to do than get in trouble!" See, he is rotten and sneaky! I had him laughing so hard on the phone yesterday! He even got the nurse laughing! He is so sweet! but still rotten!
Last night he ate an entire cup of yogurt! It was bedtime and I told him it was too late to eat it! Nothing would do him but to have it! I was thrilled that he ate the entire little cup! The first time ever! BUT....the nausea began..he broke out in a sweat and got so sick! I had to vent him and take most of it back out of his tummy! I was so afraid he would throw it all back up and aspirate! I was devastated that I let him eat it then! No win situation! Bless his little heart, he wants to eat so much! He settled down to sleep and about half a hour later had to use the bathroom! It went straight through him! I had to lie with him for a while and got lots of sugars and hugs. I think Momma needed it more than he did!
Spencer is with Dad again today! Not sure how much work he will get done! I know Spencer thoroughly enjoys it! He has the biggest imagination and can occupy himself really well! Maybe...just maybe Dad can work! I know Sissy Bear is missing someone!
Keep praying for miracles......it will take one! Pray for all the families....
Blessings and Bear Hugs,
Donna
Monday, June 18, 2007 9:38 AM CDT
Hello,
Nicholas did get platelets on Fri! They were down to 9k! The nurse slowed the infuson down really slowly and I thought he was going to react. His ear turned red and the itching began. He had a hive on it! He was itchy but that was the only hive we could find. If we had given it to him faster, I feel sure he would have had a major reaction. Goodness!
Saturday, we really enjoyed the company picnic! Nicholas and Spencer played all day and then we stayed and fished until late! It is beautiful and peaceful! We all had a great time and enjoyed the day! Sunday, we went back and fished again! They made several new friends and helped them fish too! It was so cute! I took a t-shirt kit and the boys painted their hand prints on the Best Dad..Hands Down shirt! Dad loved it! We also made one for Papaw and will give it to him today! I know two little boys that were so tired! Nicholas kept saying his legs and feet were killing him! He did walk more and do more so I guess they were! He looks really dark around his eyes!
Today, Jeff and I are celebrating our 25th Anniversary! Wow! That's definitely a milestone! I'm so thankful for the wonderful years we've had together. God has blessed us beyond measure. I pray we have many more!
Pray for all the children and families with a terminal illness or health problems!
Praying for 25 more years of miracles,
Donna
Thursday, June 14, 2007 9:39 AM CDT
Hello,
I'm talking to a little fellow on the phone, he said, "Hello Beautiful MOm!" Whooo hooo! I'm smiling now!
I asked him if he had had his bath! He said, "Oh no!" I ask what! He thought I said "math!" Too funny! He is so sweet!
We will go to JC for platelet transfusion tomorrow. Pray he doesn't have any reactions! Yes, I want miracles! I thank God for every little miracle of each second! I know we do not praise HIM enough for all the little things. Nicholas prayed for Dad to arrive home safely last night during a thunder storm and I reminded him to thank God for answering prayers too! He said, "Oh! I forgot!"
I can tell that Spencer is missing his brother alot! They will jabber and play all evening long! Spencer is a pure little monkey trying to get Nicholas to laugh at him! Well, we are down to one kitten! Smokey! Spencer calls him Smokey Mountains! We cannot find the Princess anywhere! Our neighbor will come after Smokey soon! Its really lonesome without all the funny kitty antics to watch! I think I'm missing the boys giggling at them! They really miss them! Papaw took two so we can see them at their house! I'm sure Spencer will enjoy them down there! He gets to go down there more than Nicholas.
I took Spencer to dr over his eye and they cultured it! I have antibiotic drops to put in and it looks so much better!
Pray for all in transplant, going to transplant, or getting treatments.
Miracles, Blessings, and Bear Hugs,
Hug your child today! Time is precious.
Donna
Tuesday, June 12, 2007 7:00 AM CDT
Hello,
Nicholas and Spencer are ok for the most part. Spencer seems to have an eye infection going on! It is red as a beet! I washed it out last night and put some drops in. Didn't see anything in it but matter! He said he got dust in it but thinking backward, he was complaining earlier about it.....must have something going on that is more than dust! Nicholas' did this a while back as well but resolved fairly quickly. Hopefully, Spencer's will too. Spencer's looks much more worse than Nicholas' did. Bless his little heart! He woke up around 3:30 am and said, "Mom! More matter!" I couldn't figure out what on earth he was saying and then it hit me! I jumped up and gave him a tissue to clean up his eye. He was wide awake and I asked him if he wanted to to lie down with him and he nodded his head, kissed my cheek, and said, "Precious Mommy!" Oh, what a feeling! So sweet and precious! He was having a nightmare earlier and saying, "NO MOM!" He was probably begging me not to take him to the dr! He hates going to dr! Please pray it gets better right this minute! Yes, we all want miracles immediately! Our time. God may be four days late but HE IS ON TIME! Accepting God's plan is half the battle won! Trusting totally is the other half! God will give us strength for the journey in-between. We may fall down, stumble, quit a thousand times, but we have to crawl, gain our strength back to be able to walk again and hold our heads up and fight for our children or for ourselves. God will furnish everything we NEED, not our wants or wills but our needs. I think I know what I need but I'm sure God is amused at my silly requests! HA! Can't you just see God smiling at my ideas? Much like us as parents, when our children are rattling ninety miles a minute and are so amusing! Can't you just see Him patting our heads and saying, "Maybe tomorrow, we'll do that!" or "Not now Child, maybe in a little while!" He is never too busy for our silly requests! I don't think my requests are silly! I'm sure the boys do not think their requests are silly either!
My hand is sore but recovering! I made it really sore by holding a precious little girl named Katie Beth! She has grown so much and so sweet! She is Jeff's great niece! Nicholas walked in the room and saw me holding her, he stopped in his tracks, a look of total hurt came over his face, and his shoulders just fell in disppointment! Crushed my heart into a million pieces! But he seized the opportunity to capture Katie Beth's mom, Michelle, and Aunt Cathy and made them play with the water guns they had bought him! They all were soaked! He didn't want me to give Katie Beth back because he is so worried about babies crying! He is petrified of them! Spencer had a fleeting look of jealousy cross over his face but he came over and talked to her and played with her a little bit. I don't think he liked me holding her even though he says he wants a sister!! He crawled up in Jeff's lap and stayed there!
Please pray for Sissy Bear's brother-in-law, he has kidney stones and in the hospital. Pray for all the FA children in bmt or about to go into bmt. Pray for the Pearls as they deal with Matt's next battle. Pray for Dylan and Evan, local twins in bone marrow failure. Pray for Brandon, who is also in bm failure.....Too many! And don't forget to pray for Nicholas and yes, I want a miracle asap.
Miracles, Patience, Courage, Strenth, Blessings, and Lots of Bear Hugs,
Donna
Friday, June 8, 2007 2:58 PM CDT
Hello,
We are back from the platelet transfusion and Nicholas had a reaction this time. He started breaking out and itching. He ended up with about 20 hives but was ok enough for us to leave. He was a little grumpy but overall did well. Thank God he didn't get any worse. His temp went up a little but didn't stay up. I think the transfusion went in a little too fast. If they could slow them down some, I think it will stop the reactions. It was very scary and I didn't realize I was holding my breath until it was all over with! I feel exhausted and very tired now! Billie was getting nervous as he developed more and more hives! She did witness his reaction for the first time! Nicholas' ferritin level is back up and I realized it was after the red cell transfusion last week and that is the probable cause! It seems to be a continual fight! One he will have the rest of his life!
Spencer is learning Spanish!! He is rotten to the core! He is a pure joy and I miss them so much since I've returned back to work! He has been helping Sissy Bear and is a very good little helper!
Praying for all the children with FA and other diseases! Remember all the families as well.
Miracles, Blessings, and Bear Hugs,
Donna
Thankful Door is open!
Wednesday, June 6, 2007 8:34 AM CDT
Please remember the Pearls; Matt, he is suffering with AVN, Avascular Necrosis, the blood supply has been cut off to his hip and may require hip replacement. I know they are devastated and heart broken but in true Pearl fashion, they will take the bull by the horns and make the most out of the situation and prevail!
Reminds me of Spencer's episode but much worse!
*************
Hello,
Nothing much has been happening...Nicholas had to have new frames on his glasses because he broke the other ones! He is rotten to the core and is developing a huge attitude! He is being a typical Strouth; voicing his opinions! If he doesn't want to do something, he will whine and pout! I have to remind him to "Change your attitude" all the time! I know he doesn't feel the best and we are all making too many exceptions for him! I have been teaching them about when the devil comes knocking, to let Jesus get the door! Well, a while back, Nicholas was pouting about something and I reminded him to change his attitude. A little while later, I felt a litte hand patting me and turned around to see a huge smile. I asked him what was going on and he said, "Jesus got the door! I'm not going to be grumpy!" It was then I remembered telling him that! He is a very fast learner! Now, if he will remember to do that each time, I would have it made! If only I could remember to do that each time, wow, I would be happy all the time! HA! I need to practice what I preach huh?
Spencer was up early yesterday morning, calling Sissy Bear to come after him the first thing! He said, "I'm going to help her clean today!" YES! She is teaching him to spring clean! HA! HA! He probably went and read more books in the Magic Treehouse series! They love those books! Spencer is growing straight up and thin as he can be! He runs everywhere! He is taller than Nicholas now, much to Nicholas' dismay! Spencer will say that HE is the big brother! Makes Nicholas mad! Nicholas will look to me for reassurance that he is still the "Big" brother!
Pray for all the FAmilies. Emotional roller coaster! When Nicholas is doing ok, it gives me too much time to think! It is then that the ton of bricks I've kept at bay will hit me. It is continuous. I want him to enjoy everything but we are afraid to go into big crowds. We will just have to pick and choose the fun things to do! Pray for wisdom, guidance, strength, courage, and miracles.
Jesus, please get the doors! The doubting door, questioning door, wondering door, mad door, aggravated door, hurting door, I hate FA door.......etc! Thank God He can close all those and open the peace and contentment door, trusting door, happy door, loving door, great attitude door, the I love life door, and the thankful door!
Donna
Monday, June 4, 2007 10:09 AM CDT
Hello!
Yes, I'm typing with two hands! I get the stitches out tomorrow and I had to take the splint off to type! My hand is very weak and in some pain...it will take a while to heal I'm sure. Nicholas will look at my stitches and say, "Oh Mom! That makes me weak!" He would probably end up throwing up too!
Nicholas did get his transfusions on Fri. He received both platelets and packed red cells. The only side effect; if it was one, was his tongue itched! Yes it was itching and he asked me to scratch it! Too funny! He has been wearing his Passy Muir; his speaking valve, and been singing every word! He is so precious and the sound of his laughter is beyond words! His voice is much louder and his laughter is music! He will make up his own songs and stories and talk out loud just to hear his voice! Wonderful music to this Mommy's ears!
Spencer was officially out of school last Thurs. and went to work with Dad on Fri! He found a sand pile and played in it all day! He really enjoyed it. He is with Sissy Bear today and I think we are going to eat lunch together! He called me and sounded so sweet! I miss them terribly today!
Pray for Brandon S that needs a bone marrow transplant too. Pray for all the FA children and their families. I'm so thankful for my family! Jeff has been such a huge help during all of this, I'm so thankful for him and the boys! Spencer would hug my arm and kiss it for me! That is why it didn't hurt much!!! Nicholas would help me give him his meds and hook up his feeding tube by himself! They are such troopers! God is so good!
Miracles, Blessings, and Bear Hugs,
Donna
Sunday, May 27, 2007 5:16 PM CDT
Hello,
The stories I could tell about being a numb one-handed woman!!! Oh, well, I had better not go into detail!!
8 more days in a cast and then the other hand! According to last night asap. Enough about me. On to the subject you are waiting for. His Higness.
He received his transfusion Thurs. All went well. Nose bleed stopped until this morning. I still think it is sinus related. I hope. Dr. K gave me something called Nose Bleeds QR(quick relief). Hopefully, I won't have to use it. He has finished SOL testing. We are waiting for test scores. I ask him how his reading test went: he winked and clicked his tongue and said, "a piece of cake!" He is rotten to the core. Math-I think will be a different story. I think he did well in science and social studies.
I think someone is getting a little spoiled with mom being home; he doesn't want the nurses to do much for him; he thinks mon is the only one to do things. But....mom needs help, now. Thanks, Mary, for coming over and helping out and for Sissy Bear helping, too. Sorry, Sis, you didn't get to miss anymore bc of Nicholas. Sissy Bear has been so sick with strep throat and had to miss Fri. Pray Spencer won't get it; he was with her the eve she first got sick. He got up this morn with temp and said his throat was hurting. I think he drank some water from Sissy's water bottle!!!! Hopefully, he can make it 4 more days; Thurs. is last day of school. Nicholas is thrilled; NO MORE HOMEWORK!!!!! Spencer is not too happy; he loves school.
Pray for all the ones getting treatments at JC; we see adults as well as children. The treatment room is usually full.
Pray for all the children in transplant or getting ready for transplant.
Blessing and Bear hugs,
Donna
Thursday, May 24, 2007 12:05 AM CDT
Sissy Bear here!
Donna had surgery and is doing well.
Both nurses have been sick, so she doesn't have as much help as she thought. They have had to put up with me!!!!
Michelle came back yesterday and is working today. Shucks! I thought I would get to stay home a couple of more days!!!
Please pray for Nicholas! He has had 4 nose bleeds today and Donna and Michelle are taking him to JC for transfusion this eve. He wasn't supposed to go until tomorrow(7th day). These transfusions are getting closer and closer together. Please pray.
Thanks.
Sissy Bear
Thursday, May 17, 2007 12:37 AM CDT
Hello,
"Ahhhh, Dis is de Life" is what I say when I lay with my baby every night and he puts his little arm under my head and around my neck. It makes him smile! It makes me smile! It is so precious! I love my babies.
We go tomorrow for a platelet transfusion. Pray it goes well. Also, I'm having carpal tunnel surgery on Monday. Pray I heal quickly and bounce back because I just have too much to do to stop for any length of time! Ha! I'm sure I'll have some good little helpers at home! Bless Spencer's little heart, he is such a worry wart! He was so worried about Jeff and last night when Jeff was laughing about something, Spencer laughed and said, "Dad is feeling better!" He was worried and wouldn't hardly eat! I could tell he was about to cry and would hug and kiss on him! Nicholas would pray for him every night! They are such sweet, precious boys! God is good!
Nicholas is finished this week with his testing. He had reading tests the last two days and I asked him how he did. He crossed his arms, smiled really sly, and said, "Piece of cake!" He is rotten! His teacher said when he finished the tests, he would jump up, holler "Whoo Hooo", and do a dance...I gues its the "I'm glad that's overwith dance!" Next week, he will be testing for science and social studies....he loves science! He was drawing the other day and I asked what it was...He said, "It's the life cycle of the frog!" and explained it all to me!
School will be over with on the 31st of May! Look out summer! Nicholas said he couldn't wait because he wouldn't have homework! HA! Spencer will miss school I'm sure!
Pray for all of us next week and I have several on my heart that needs prayer. Pray for all the sick and the families. Pray for the empty arms and broken hearts as well.
Miracles, Blessings, and Bear Hugs,
Donna
Wednesday, May 16, 2007 8:14 AM CDT
Hello,
Whew! Too much has happened since I last updated! Nicholaswise, he got his transfusions on Fri and was itchy but for the most part was ok! He did get red cells and they really boosted his energy! He was so sassy! Still is! He did really well though and we are happy! He seems to be getting some bloody stuff out of his nose and that is a first for us! I have always worried about him getting nose bleeds. Pray it doesn't get to that point! He is so funny! Gross but funny!
Spencer is doing good too! He brought me some crafts for Mother's Day from school and they were absolutly wonderful! He drew a picture of me that I just love! I will try to scan it in! I love it! He and Nicholas gave me a rose(ie. Dad) for Mother's Day and they were beautiful! Nicholas is still working on his craft for me! He was a little bummed about not having it finished! I think he has forgotten about it now! Ha! He is so sweet!
Dad!......another story altogether! He called me at work on Monday and was really ill. Long story short, I took him to ER yesterday, he was really dizzy and they gave him some pain meds that made him worse! He couldn't hardly walk! He was knocked flat of his back for about 4 or 5 hours. He is feeling some better today! I felt so sorry for him!
Nicholas began his SOL testing this week! He had the math on on Monday and he called me when it was overwith! He hates math! He said, "Whew Mom, I'm never been so glad to get something overwith in my life! But I finished it! The whole thing in about 2 hours!" It made me cry! He was so happy to have it over with! He was thrilled and felt like he had really accomplished something! I'm glad he answered every question but I'm sure he had lots of problems with it! I wonder what he will make on it! He is doing much better but has a long way to go.....
Keep praying for a cure for Fanconi! and all the other diseases. Pray for the ones suffering from cancer of all types! Pray for the families for strength and courage.
Miracles, Blessings and Bear Hugs,
Donna
Wednesday, May 9, 2007 8:59 AM CDT
Hello,
Want to do something really special for your mom for Mother's Day?
If you are between the ages of 18 and 60 and in general good health--here's your chance to join the NMDP Registry for free! The National Marrow Donor Program will send the easy-to-use kit right to your home and the best part is that you may one day get a chance to save someone's life.
Visit the Thanks MOM!web page to learn more.
As part of this nationwide event, NMDP encourages you to share information about Thanks Mom with friends and family members by using the Tell A Friend function on their website. Please feel free to share this e-mail and promotion with everyone you know.
They are hoping to add 20,000 new donors to the NMDP Registry May 7 - 21.
Join today and send your Mom a card telling her it was in her honor! YOU will make her proud!
Nicholas and Spencer are doing good! Nicholas will get platelets and red cells on Fri, so remember him and us as it will be a long day!
Only when we see the invisible can we do the impossible!
Donna
Working together we can reach this goal.
Monday, May 7, 2007 8:40 AM CDT
Hello,
We are doing great! Nicholas did get to go with us on Spencer field trip to the Zoo! We had a really great day and a wonderful time! We rented a little cart to push him around in and he loved it! Normally, he wouldn't have sat in it most of the time but he did and still enjoyed himself! Guess what he did! He rode a camel! I asked him if he wanted to and he said, "Are you nuts?" I told him that Spencer was going too! He wanted me too but Dad ended up riding with them! It was hilarious! After it was overwith, Dad said, "I'd just as soon ride my truck!" Nicholas said, "You said it Dad!" Too funny! There was a Kid's Cove and Spencer got in the water and was soaked to the bone! He had a ball! They also got to comb the goats and a llama! One goat made a bee line for Nicholas and tried to nibble on his thermovent, the filter that covers his trach! Scared Nicholas to pieces! It must have liked the yellow Spongebob on Nicholas' shirt! It was funny! There was a carosel which reminded Nicholas of his Make a Wish trip and GKTW village and also started him begging to go back! He loved Mayor Clayton!
Friday, we went for Nicholas' platelet transfusion and again, he did wonderfully! No reactions, no hives, no itching equals no scatching and everyone happy! Billie, his other new nurse went with us and did great as well! She is a real sweetie! I think she will work out great!
Nicholas' lungs sound much better and his secretions have diminished tremendously! I changed his trach this weekend and he said it had been hurting! He has complained several times saying, "It's killing me!" He didn't say anything after I changed it! Maybe it does feel better! They both have enjoyed the 5 baby kittens since Baby Black girl moved them out of the attic and we made them a place on the deck! They can get to them really well and have pestered them to pieces! They are adorable! Many more giggles! 
Praying for all the children, residents of Kansas, and all the ones taking treatments or transfusions. God is good all the time and all the time God is good!
When you see the invisible, you can do the impossible!
Donna
Monday, April 30, 2007 1:33 PM CDT
Hello,
Nicholas is doing much better with the transfusions! No Benadryl means no grumpies! Well, for the most part anyway! He will not let them flush with Heparin, Momma has to do it! He is doing much better lung wise also. His secretions are less and not as thick. He did cough up blood until Saturday before it diminished! Thank the Lord it stopped and he has been rotten! Overall, he is doing great! He woke up really early this morning and was very nauseated. I vented but couldn't get any extra gas out of his tummy. He was up and welcomed Nurse No. 5, Billie with a big smile! She is really nice and hopefully a keeper!
Spencer was all smiles and talking 90 miles a minute this morning! He had to put his two cents worth in and inform Billie that Nicholas had a central line! Which didn't please "His Highness!" I told him he had to share Ms Billie with Spencer or at least let him talk to her! Ha!
We did have Nicholas' eligiblility meeting and was given the results of his formal testing!!!! Drum Roll..........please! Nicholas IQ is 108! FAR FAR from the 40 to 60 that they told me he would have! His math did bring his score down....he definitely is LEFT BRAIN! And has a disability in MATH! He is visual and verbal! He can do it but it takes him longer to process the problems. We will definitely need help in this area. But guess where he is in reading and comprehension???? 7th grade level in comprehension, with an IQ of 117, 6th grade in Decoding words and we are so proud of him! It amazes me that he can lay his head down on his desk without any much energy and still make STRAIGHT A's!!!!! Yes, he was on the principals list this 6 weeks! He is totally amazing!!!
Praying for all the ones getting ready for transplants, transfusions, or testing! Praying for the empty arms as well.
Miracles,
Donna
Thursday, April 26, 2007 9:58 AM CDT
Hello,
Nicholas is rotten to the core! I told you he was fiesty and sassy! Guess what he did yesterday! He tried to pull a fast one on his teacher. She walked in and he tried to act droopy and said, "I just don't feel good!" She could see differently! His nurse said, "Hmm, you were fine a little while ago when you were helping your Dad!" He looks sheepish! Then Ms Trish said, "Well, we will wait until your mom gets here and tell her you don't feel like playing outside!" Well! Nicholas looked shocked and laughed, saying, "Let's getter done then!" He knew she had him then! HA! That's not all!! Michelle said, "Nicholas, where are your hearing aids?" Ms Trish told her that they weren't in when she arrived! Nicholas ran to his desk and fished them out!!! He had hidden them! He doesn't like them at all! He cannot scratch inside his ears when he needs too and pulls them out! I'm hoping he isn't allergic to them! AND that's not all! I told you he was rotten! He was aggravating the UPS man, Gene too! He would not tell him who Michelle was or her name! He loves Gene because he gives him bubble gum! Then, when Gene left he told Nicholas to tell "No name" bye for him! Nicholas said in a very loud tone, "Her name is MICHELLE, don't you know?" SASSY!
We are going for platelets tomorrow! Please remember him in your prayers! He has bruises galore on his legs! We were playing frizbee and he would run and land on his knees! No wonder he is bruised! He ran to the bathroom and sort of scared me. He was breathing really hard and the stridor was very loud! He finally settled down and began breathing normal! He definitely could not run for any length of time! I'm so thankful he felt like running and playing! That is wonderful and such a blessing. Yes, I love him sassy! I'll say it again! Yes, I'll probably regret it!!! But the alternative isn't a pleasant picture. It tears my heart out to see him the week before his red cells! He gets so droopy, coloring is horrible, cannot think straight! Oh, that reminds me! I was telling them about someone that fractured his skull..and you talk about the questions! He wanted to know if your brain fell out, would you still think straight or would you think crazy!! HA! He is so funny! He keeps us all laughing!
Spencer was helping Daddy change oil in the van last night and I just had to get my camera! It was too cute! I'll post it when I get a chance! I loved it! He is his Daddy's little shadow!
Praying for all the families that have lost their loved ones! Praying for Skylar, a little girl that really needs your prayers. Praying for all the ones that are facing serious decisions for their babies health issues. God lets us know when the decision is the right one and we have to make them according to how we feel inside. We base our decisions on the knowledge we have at that time and we cannot look back. Medical information changes with new meds and research...and we just have to deal with what we know at the time. Our decisions could have been different if we had more knowledge then that we have now, so we cannot second guess ourselves. We learn as the researchers learn and let us know the new developments and base our decisions on that. We just have to change our decisions as we gain more knowledge. I've had to eat my words many times but do it and move on. I would do anything for my babies!
Praying for guidance, miracles, comfort, wisdom, courage, and strength!
Donna
Wednesday, April 25, 2007 12:21 AM CDT
Sissy Bear just asked why I hadn't updated! Ooops! I didn't realize anyone was missing us!!! Actually, Nicholas is doing good. His lungs have cleared up tremendously! I'm just wondering if it was the reactions from the previous transfusions or from the Benadryl!!!!! Whatever made it better doesn't matter, I'll take improvement anytime! We are getting platelets on a weekly basis now. Please pray for a miracle. We only have one more type of platelets to try and that is HLA typed specific. Pray the washed platelets continue to work!
Nicholas definitely has an attitude! He demands everything! Yes, he gets it! But he has been taught manners! I will have to watch what I say! I did say I liked him sassy! Sassy he is! So precious! I love seeing him this way! Ms Trish can tell a big difference in him on his math! He does much better with red cells! More oxygen to his brain equals better thinking! Bless his little heart, he is a trooper! He doesn't like math! He loves reading though! He will have to take the SOLs this year too. I do not think he is prepared or has the background that he needed to have in Math to really comprehend the third grade level. We'll see! He will definitely have problems in that area because he has had so much help and not been working on his own! Reading and comprehension he will have no problem.... We have an IEP meeting tomorrow and I'll find out his IQ and how well he did in the different areas he was tested in.
Spencer is a little croupy! He helped mow the lawn and I think he has allergies! He was so much better but now he is congested again. He slept better last night but I think it was the cold meds I gave him! He is a little ray of sunshine!
Pray for all the accident victims...they really need your prayers. Pray for the ones in transfusion and transplant! Here are a few... Skylar, Anthony, Charisse, Will, Jordan, Julia, Jorga, Ivan, Diana, Khalita, Westin, Abel, Dylan, Jordan, Derrick, Stephan, Dustin, Brandon, that need your prayers as well. Jeff's brother Darrell is in the hospital too. Pray that he gets some answers!
Praying for miracles,
Donna
Monday, April 23, 2007 12:01 AM CDT
Hello,
I'm sure there are lots of funny things I could write about if I had the brain to remember all of them! We had a great weekend. Sunny and warm enough to play outside and outside we stayed! Nicholas felt great for the most part but by Sunday evening, he was really tired. He had to have something to sit on while playing in their sand box. He even asked me to brush his teeth! He seemed ok but was really tired. He didn't sleep all that well though. I could hear him yawning! Then, I would have to get up and suction him. Spencer must have had nightmares and was saying, "Mom!" and didn't really go back to sleep good for an hour and a half! Needless to say, I'm tired! I think Nicholas and I both needed a cup of coffee yesterday evening! HA! NO, I do not give him coffee!
The boys did get to spend some time with Sissy Bear! They begged me to let them go to her house! Then they thought they were spending the night! NOT!
Please remember these people that were in recent wrecks or sick, Donnie, Shorty, Melissa, Jabo, Jordan, Brandon, Dustin, Danielle. These are all local people that really need your prayers. There are hundreds listed on the Prayer Bears as well that need prayers and miracles. God is so merciful and yet we won't even recognize Him or acknowledge His goodness.
Mercy, grace, wisdom, courage, strength, miracles, and whatever else we need, that's what I'm praying for.
Donna
Friday, April 20, 2007 12:16 AM CDT
Hello,
I typed an update and lost it! My fault though! Oh well! I have a very happy little boy! Laughing! Smiling! Fiesty! Pesty! Sassy! Rotten to the core! But I love it! That is what happens when someone donates blood! It gives "New Life for Nicholas!" Rejuvenates! Revitalizes! Renews those wonderful smiles! Gives color back to every part of his body! Puts the sparkle back in the eyes! Puts the imp in impish! Catch my drift? Yes, it restores life! I don't know how to explain it any better! If you have a loved one that lives in the Charlotte, NC area, please call them or email them and let them know that Nicholas needs the blood and platelets! It could be their blood that is renewing Nicholas life and makes our hearts sing!! And it brings smiles to others! See if one person acts it does make a difference in not only one person but several!!!! If you could see all the smiles when everyone reads that first line, you would understand the importance of doing something! Donating Blood equals smiles! Lots of them! If you smiled, email someone! Cried? Email someone! Laughed? Email someone! Encourage blood donors today! OR my little Dracula will come and get it himself! He loves his little cape and has been in Dracula imagination world! Even wore it for his transfusion the other day! Too funny! Dracula getting a transfusion via c-line! HA! Will take a photo next time!
Spencer came home and told me he had to wear VT colors today! I managed to rig something up for him! He wanted to write VT on it but we didn't. He had to have Nicholas telling him funny tales while he took a bath! He is so funny! I love to listen to the giggles and laughs! I know I say that all the time but it is so precious! Stop and listen sometime to your children! Open those ears! Enjoy every second! Hugg'em and lov'em while you have them. Time is precious.
Pray for all the ones getting treatments or transfusions! There is a lot of children and adults in both! Please remember VT families and the shooters parents too.
Donate blood so Nicholas can be sassy!
Blessings and Miracles,
Donna
Thursday, April 19, 2007 8:04 AM CDT
Hello,
Nicholas did get his (washed)platelet and packed red cell transfusion yesterday without any major hives. He only received 75 ml of platelets though! His count wasn't too bad but we were already scheduled. He is going to get a platelet tx every week. The next one is on Fri! I'm sort of worried about that and may go on Thur instead. Nicholas' coloring was definitely better last night! He was looking very yellowish but the tx made a difference! He was also very perky and fiesty! Dad was tickled to pieces that he was so revived! I know its hard on Jeff, not being there with us and constantly worrying about what is happening! I usually call him and keep him updated to relieve some worry but I know that is not being there.
We try to keep Spencer's schedule as normal as possible! We try to alleviate any stress for him in every possible way! I worry so much about him! Jeff works his schedule so that he is there for Spencer every evening that I'm not! He loves his Daddy! He loves helping him outside and works like a little man! I do thank God for my family. Thanks Sissy Bear for going with us again!
One of our highlights yesterday was meeting the Sturgill family! Dylan sure is a cutie pie! Ann, hang in there!
Please pray for Jeff's brother Darrell. He goes back to dr today to get some results about his lungs. They are getting much worse and they still aren't sure what is exactly wrong! Please pray for them as he goes through more testing!
Pray for VT Tech, the families that are involved and the parents of Cho. Their hearts have to be broken as well. Tragic! Our cousins that were there are all safe and for that we are thankful. It breaks my heart and I didn't even go to VT! I can't imagine having a child there and hearing about a shooting rampage going on there! Please pray our nation as well.
Praying for all the FAmilies going to transplant or making major decisions on treatment. Praying for the empty arms as well. How long Lord? How long will the little one suffer? How long until you return to take us home?
Miracles,
Donna
Monday, April 16, 2007 7:52 AM CDT
Hello,
Nicholas did have his first washed platelet transfusion on Fri and had a couple of hives. Out of 311 cc bag, he actually received 100 cc of washed platelets! They do not give Benedryl as a pre-med...or to anyone with anemia!!! Said it would hinder the function of the platelets, like Motrin or Aspirin! That was news to me! But considering Nicholas' production of platelets is nil to nothing, I guess in the long scheme of things it doesn't matter much! But if it hinders the function of the transfusion, that is a horse of a different color! I would not give him anything that would hurt him! He did well overall and we are so thankful for that! I'm really facing reality and know that it will be hard from here on out! We will be going this week for both packed red cells and for platelets! They get their blood products from Charlotte, NC, Red Cross! If you live in that area, please go and donate! Tell them it is in honor of Nicholas and it will replace what we use! I'm so thankful that there are faithful donors. Nicholas actually received A ! That in itself was enough to cause tension but he did fine! It was a long long day! With red cells added on to that will even be longer, 3 to 4 hours longer! Sissy Bear went with me and helped me so much! I didn't realize how tired I was! Thanks Sissy! As Nicholas says, "You're the best!"
Wednesday, we made it to Spencer's field trip to watch the production of 101 Dalmations! Spencer didn't like Cruella Deville but Nicholas loved her! She wanted a photo with Nicholas but Spencer would not get near her! It was funny! Then, we picked up Nicholas' hearing aids! WOW! He can hear! Whispers too! I told him that I just didn't know about him hearing me whisper, he would know all my secrets! He just smiled! He loved them! Except for hearing a baby cry! He couldn't stand it! The dr actually toned down the high pitched tones and that will help Nicholas tremendously! He doesn't like when his ears itch and he cannot scratch them! Then I hear, "When are you going to take these things out for a while??"
When we got home, Nicholas spiked a temp of 101.3, burping most of the day and ended up vomiting! We had to cut school short too! I was so scared he had that stomach virus that his nurse had! He has ran a low grade temp every since and for the most part he is droopy!
Saturday morning, I watched Spencer wake up and he didn't know I was watching him! He was in Imagination mode and was waving his arms and hands, motioning something out! His back was to me! Then he reached over and kissed Nicholas hand, sat down facing me and then just leaned over on Nicholas' bed and kept kissing his hand! Brought tears to my eyes as I continually think of him and how he is dealing with all of this! He smiled at me and bounced into my bed when I said my usual "Good morning Sunshine!" and we got to snuggle for a minute or two! He is so precious!
Yesterday, Nicholas was drooping around again until Sissy and Daddy Bear came to play hide-n-seek! He perked up some then but was asleep as soon as his head hit the pillow! His HGB was down to 7.6 on Fri! He keeps saying, "I feel weak Mom!" Tears my heart out when I hear him say this along with his coloring! He looks like he feels terrible as well. Pray that he will feel better and has no reactions from the transfusions this week!
Our hearts are saddened with the passing of Little John. Pray for his family as they deal with the loss and the grieving begins. FA is fatal.
Praying for all the FAmilies and their journeys. Praying for all the ones we are meeting that are taking chemo treatments. Praying for miracles. Thanking God for the miracles we receive every day! Ability to wake up, see, breathe, eat, hug and kiss our loved ones, able to praise and worship God in a free manner! Thank God! And He has a storehouse FULL of blessings for us! Claim yours today!
Blessings and Bear Hugs,
Donna
Tuesday, April 10, 2007 11:07 AM CDT
Hello,
Nicholas made 100s yesterday in school! He is back in the saddle! Ha! I'm sure he isn't too happy that school has started back! He asked me the other day when school would be over for good! He hates homework! His nurse has gotten a really good response with rewarding him and bringing him videos to watch! He will work really good for her! She is really good with him and I'm glad! He keeps being really sweet to her! He wants more videos!!! Ha! He is rotten to the core! Yes, he has everyone wrapped around his little fingers! I guess if you had to stay tied up all the time, anything is a break! He told me last night he couldn't wait until it warmed back up and he could go outside! Me either! He is so loving and sweet though! He will hold up his little arms for hugs and kisses, so precious!
I asked Spencer how his first day back was! He said fine! I asked him if he told the class about the bunny cake! He said, "No! I told them about my cat that was going to have kittens! If she has a white one, I'm going to name it Mayonnaise!!!!!" I couldn't help but laugh! He is too funny! He laughed and said that one little girl went "YUCK!" He was laughing and in such a big way! He is a little congested and I do believe he has inherited his Dad's allergies! Oh no!
Please remember all the children in your prayers that are facing bone marrow transplants! Too many that is for sure! Keep praying!
Miracles,
Donna
Monday, April 9, 2007 8:54 AM CDT
Hello,
The boys have had a wonderful Easter! We colored the eggs after church but they didn't even hid them! I guess we hid them too much earlier!! We had a wonderful dinner and were blessed to have Mamaw Boggs along with Mamaw and Papaw Strouth and Sissy Bear, all cooking for a wonderful meal! You missed it! We topped it all off with a very colorful, decorated by the Boggs Bears themselves, orange cake with Butter Cream icing in the shape of a bunny with a bowtie! It was so cute! They loved decorating it and had a wonderful time with the sprinkles! Pastel colored Dinosaurs! Too funny! along with jelly beans and colored sugar, chocolate kisses (we had to have something chocolate!) for the eyes and nose and colored tooth picks for the whiskers! No photo available, just the mouth watering descriptions! HA!
For the most part, everyone was well except for me and Dad! Dad still suffering from allergies and I must have caught a bug during the transfusion time because my nose ran like a sugar tree all weekend! Eyes watered, sneezing, coughing, and felt horrible, almost like RSV!! And it snowed! No wonder everyone is sick! Weather changes are wonderful to promote colds!
Nicholas has a very weak stomach! Spencer discovered kids mouthwash and Nicholas cannot stand the thoughts of it, let alone smell Spencers bubblegum breath! I realized this was the cause of a violent gas spell in which Nicholas ended up vomiting and very sick! Afer it was all over with, Nicholas patted my face and caressed me with kisses saying, "Thanks Mom for caring for me!" Aww, he is too much!
Pray for all the children that are going to transplant. Pray for Little John (FA) as he is in critical condition!
Miracles,
Donna
Friday, April 6, 2007 8:25 AM CDT
Another blessing! No major reaction to the transfusion yesterday and they weren't washed platelets! OK...the reason being, when you wash platelets they have to be transfused within 4 hrs...and they don't bring them to Mtn View! We have to go there to get them! Now, he hasn't ever been to Holston Valley. I decided to go back to Johnson City.....back to Dr Kalwinsky! They do transfusions on a daily basis and at least he is familiar with FA!!! He was the one that ordered the bloodwork for FA and told us that Nicholas' test were positive for it! That being said, we will be going to JC every week for transfusions now. They will be washing the platelets and possibly going to the HLA typed matched donor! IF you get a call that someone needs your blood and platelets, please go and donate. It will be better on Nicholas to have only a couple of donors instead of several! JC does not get their blood products from Marsh Blood Bank either! I'll find out where they get them and will post it. Another thing with getting washed platelets, they do not last as long either! Which may mean, getting more frequent transfusions(tx)!
We have slowed the rate down for the transfusions too. He was itchy yesterday and his temp went up to within 0.3 d of stopping the tx! It will make for a much longer trip to go to JC and then getting a slow tx, especially with red cells too! Goodness! Nicholas was really grumpy yesterday! Even up until late evening! He went to sleep fairly quickly too! He was exhausted! He coughed up some bloody streaks too! He was very pale and his coloring was horrible! He asked for tylenol last night for his right arm and right leg hurting! Not sure why that is happening but it seems to be more frequent! The nurse said he looks better this morning! He is very loving this morning!
He was really sweet last night too! Very loving! He wanted me to lay with him and he would hug my arm and kiss my hand and then turn his cheek to me and let me kiss him! This was repeated several times! Precious! So precious! He will also take his little finger and caress my face while looking me in the eyes. Touched by an angel most definitely! I'm so blessed!
I think Sissy Bear has worn Spencer out this week! He chose to go to his Mamaw's today instead of going on an hour long trip with her! He said, "Mom! It takes 12 hrs to get there!" It was so funny!
Please remember all the FA children and families in your prayers! Pray for all the ones on treatments as well.
Stay blessed and have a God filled Easter! The tomb is definitely emtpy!
Blessings, Miracles, and Bear Hugs,
Donna
Wednesday, April 4, 2007 7:33 AM CDT
***UPDATE***
We are going for platelets tomorrow! Hopefully, we are trying the washed platelets! They lose about 20 percent in the washings which could result in more frequent transfusions...but prayerfully less reactions! Keep praying!
******************************************************************************
God is good all the time and All the time God is good! Thanks Ann for the reminder! HE is good! Guess what the platelet antibody test showed????? Yes, you guessed it! It is great news that he has 0 percent antibodies to platelets! Thank you Lord for answering prayers! Thank you Papa Bear Prayer Bears for praying! We couldn't make it without your prayers and support! Wow! That is just wonderful news! Yes, I'm happy and rejoicing! God is merciful! He hears our petitions and knows our hearts. God isn't finished with Nicholas yet! I know He has plans for him and it is amazing to be able to participate and watch His plan unfold.
Now, the question is...what is he allergic too in the transfusions. The anticoagulents? Plasma? Protein? The donor? What can we do to help prevent these violent reactions? He itches really badly and I cannot scratch fast enough or everywhere at once! His little arms had purple dots all over them for a couple days afterwards. I assumed it was from the scratching but the more I think of it, it was dots nots long places that you would think scratching would leave...it must be from the hives...Who knows!
Spencer has been Sissy Bears little shadow while school is out! He has helped her and Mamaw! He is so sweet! He has been helping Dad in the evenings and thinks he is just the biggest little man on earth! He is also helping take care of Nicholas! Most of the time! Then, he will forget and play too rough!
Happy Anniversary to Joel and Trossie! How many years? 27??? Wow! How time has flown.....Goodness gracious I cannot believe it has been that long! It seems like yesterday in one way and then like forever in another way!
Pray for all of us! All the FAmilies need your prayers and any families that are going throught major health problems! Pray for strength, courage, wisdom, and grace. Pray for the hedge of protection to surround us all....
Our souls, Our minds, Our hearts, are in the hands of the Lord! Trusting in the Lord, the Healer, the miracle worker, the one and only Saviour of the world! He is risen! Miracles are happening,
Donna
Tuesday, April 3, 2007 8:21 AM CDT
Hello,
I guess all of you already know that Nicholas had another severe reaction to the platelets on Wednesday. The nurse had just left the room and it began! He may have gotten an ounce of platelets and we had to discontinue them. I was totally wiped out along with the nurses! We were told it would probably be a good idea if we went to a Children's hospital with a PICU in it! We went back the next day for round 2! The nurse looked at me in dispair and said, "Are you back?" "Are we going to try it again?" Talk about making me feel good! We geared up and proceeded to wait for 4 hours before anything was even started! We were already nervous and then to have to wait that long was rediculous! Anyway, I witnessed a miracle! Nicholas didn't have one hive! Yes, we should get the results back this week from the testing to see if he has developed antibodies to the platelets! Yes, he could do this...yes, it would be horrible. BUT God did touch him on Thursday and heard the prayers of everyone! I know beyond a shadow of a doubt that God answered our prayers. Nicholas is doing some better......he received red cells and that means he was back to his little old stinker self! Laughing, playing, rosy red cheeked(sort of), little impish ways, pestering mom, and just being himself. We aren't 100 percent....he is still coughing and actually coughed up blood from Fri til Sun! Don't know what is going on with that... He still sounds squeaky and tight when he coughs but I can tell the coughing is diminishing. Hopefully, he is on the mend. I took him to his school on Fri and he actually had a couple of hours on the computer there. He did great and didn't want to leave the school!
Spencer had his Easter party and is off on Easter break this week! He loves it! He ended up reading 184 books and that doesn't include the weekend or any he read on Fri!
He came home on Fri with a temp of 102 and we've been battling that all weekend. He woke up Sat and said, "Mom, I have a sore throat, ear infection, a stuffy nose and I need hot chocolate!" Sounds like a cure to me! He didn't even drink it until later! I gave him some allergy meds and it seemed to really help him! He is going to be just like his Dad! Jeff is miserable with allergies!
Back to the platelet issue. When you have multiple transfusins, the body can develop antibodies against them. He has had more platelets tx than red cell tx and that his why he could be reacting to just the platelets. I'm praying the antibody test is negative. This is a major concern and always has been. But as we see more and more reactions, we could possibly be seeing the development of antibodies. Pray it isn't so!
Pray for all the children that are just above transplant level! There are about 6 right now that really needs your prayers.
Praising God for miracles,
Donna
Wednesday, March 28, 2007 9:16 AM CDT
Hello,
I went home to a very droopy Nicholas. He is very sick...with what we all have had. His coughs are very squeaky, tight sounding..., and he almost lost his voice completely! High shrill cough to almost nothing....he has gone from one extreme to another. He is running a low grade temp, nothing high as of now. He looks really bad, pale, and you can definitely tell he isn't feeling good! He did play some though and helped Dad outside yesterday evening! He fell asleep instantly last night but he had been up early too!
The lab just called and they have some cmv- platelets that expire tonight so we will be getting transfused today instead of tomorrow. That is probably a good thing because we were worried about waiting until tomorrow. I am continually amazed at how God works things out. Why on this earth do we worry so much???? God is in control and the sooner we learn that, the better off we are! The happier we are, the more we get out of life! We can enjoy life! Even the hard times, the struggles, the trials are all forgotten but we sure can remember the good times! The first smiles vs the pain of child birth! Which do you remember? The first time I laid eyes on an angel, he looked so peaceful, a moment I will never forget! He didn't look as peaceful the next time I saw him, with tubes coming out of everything including his bellybutton! But what stands out the most in my memories of NICU, is kissing his feet and those little toes curling up on my upper lip! Ahhhhhh, precious memories! And those big black eyes looking, searching, full of intelligence beyond his few days old!
Baby Nicholas
Please remember us in prayer as we go for transfusion! Pray that he isn't developing allergies to the anticoagulents or additives in the platelets! Pray he will get well from all that is going on with him! Total healing!
Miracles,
Donna
Tuesday, March 27, 2007 9:51 AM CDT
Hello,
I listened to Nicholas' lungs last night and they sounded really clear. Not much air moving though but they sounded very good. I just knew the nurse would say he sounded wonderful this morning! NOT! She was hesitant but said he really sounds junky and she had suctioned much more out of him this morning! That was not what I wanted to hear. He didn't cough last night until 5:30 this morning. He is sounding much louder! Don't know what is causing that but his voice is definitely different! Loud and squeaky! Must be the Exjade, that's all that is different!
Yes, Cindy this has been a roller coaster ride and a half! Reminds me of one we were on years ago, Sissy Bear shut her eyes and I asked her what she thought of the second loop, she asked, "What second loop???" I pointed it out and she couldn't believe it! So the point is ....close your eyes and you won't even know you are in a loop! HA! Those rose colored glasses again I guess! It is never ending though and there isn't many rest stops along the way...just some gradual slopes. Everyone else has the option to get off, Moms and Dads don't! There isn't a break for us! It's by the grace of God that we are still sane! Well, I think we are sane! I think we are.....I think we are.......
Nicholas was trying to climb the slide and was saying, "I think I can, I think I can!" So precious! He has been talking under his breath a lot! I cannot hear it most of the time though! He was aggravated at Spencer last night because he wouldn't play with him and he was furious! He was pouting and fussing up a storm, under his breath too! He wasn't nice to anyone...being rude, and sassy!... a total little grumpy bear! Then he wanted the phone, hmmmmm, maybe he needs a lesson. I decided to ground him to see if that would help his attitude! He said, "Mom, I deserve to be grounded from the phone!" Ahhhh, broke my heart into a million pieces! I waited him out......after about a half hour, he said, "Mom, can we talk?" Of course I said yes! He said, "I'm sorry!" That was what I was waiting for! He smiled from ear to ear and was back to his happy little self and that sunny disposition! He called Sissy Bear Tales immediately! She has been reading him Magic Treehouse books and he loves them! Hmmmm, maybe I need to remember that one! He could not live without his phone! He asks for it every night and when I ask him who he is calling he says, "I'm just making my nightly calls!" Whoever is home that will read him a story! HA! He is so funny!
Spencer has read more....a grand total of 155 now! He is so proud of himself! They will be going on a couple of field trips soon and he is trying his best to not get a demerit! He doesn't have one as far as I know! Easter break is next week! I know they call it Spring break but its Easter break to me!
Pray for all the families going through a major health crisis! There are so many! Pray for the newly diagnosed as well! Its heart wrenching but God is able to be there in the time of need. God's plan is the best plan! Trust in Him! Thank you Lord for letting me be a part of Nicholas' and Spencer's plan. I feel priviledged to get those precious hugs and kisses. What did I do to deserve such good rewards? They sure lift my spirits!
Miracles,
Donna
Monday, March 26, 2007 9:58 AM CDT
Hello,
Beautiful weekend, warm weather, and "Mom can I get off milk?" were the most asked question! OUTSIDE we were all weekend. I was not feeling well but the boys really enjoyed their time out and I did when I could keep my eyes open! Yesterday was much better and we cooked out and had a great day. That is all on the surface, what is going on inside is a totally different story.
Nicholas is coughing horribly! Thick secretions are making it hard for him to cough too. His lungs sound really junky but his temp is ok so far. Low grade at the highest. He seems ok, sneezing but no runny nose. He did cough up some blood but not much. He seems ok, but my instincts are buzzing! I keep praying for strength and that is my warning that something is on the way! God does prepare us, I just need to listen. Nicholas will go and go until he cannot go any farther. His coloring is off and bruising galore. His counts are dropping but the bruisies means he has had fun! He is in a catch 22 situation! He enjoys himself so much! He laughed so much this weekend. It was so precious! Spencer too! They are hoots!
Pray for Papaw as he is sick now! My head is splitting this morning but I seem to be lots better. Super Sam is home, that is an answered prayer. Pray for the empty arms, pray for the ones struggling, Anthony S, Charisse, Skylar, Abel, Sandra H and Sandra C, Anthony M, and many, many more.
Miracles,
Donna
Friday, March 23, 2007 7:45 AM CDT
Hello,
Our hearts go out to the Willford/Dixion family in SC. Their son, Alex passed away yesterday. He was suppose to have his 3rd bmt today. Please remember this family in your prayers and the FAmily as well. It sure is a reality check and we all know its inevitable at some point. FA patients usually pass away due to cancer if not from complications of the bmt. FA causes a defect in the DNA that tells the body to start repairing a cell when it is damaged, thus cancer is always a concern. Leukemia, solid tumors, MDS, are what we have to watch for besides bone marrow failure. See? Its never ending....even if they are eligible for a bmt.
What do we do when we are in bone marrow failure and no hope of a transplant? We live each minute! We laugh and play as much as possible. We make the most of every day. Or try to if possible. Are we stressed? Nah! Never!! HA! Gotcha on that one! There seems to be drama all the time but God is faithful and continues to give strength and courage beyond measure. God's Grace is sufficient all the time, but especially during a major crisis! There is nothing like the peace of God. Nothing on this earth to even begin comparing too. It is God given and felt down deep in the soul. I thank God for everything. He has given us so much precious time with Nicholas. What a gift! Susan got to have 17 precious years with Alex. Some don't get that much time, some get lots more. I want lots more and pray for time to be granted for each family with FA or any illness. God holds the keys to life and death. It is up to us how we spend that precious gift called time.
One good thing is praying! Pray for Nicholas as I think he is getting this horrible cold that I have. He has been sneezing and coughing through out the night. His cough is really loud and that in itself is unusual. Pray for all the families that are re-examining their time they have spent with their children this morning in the FA world. Its heartbreaking. Pray for the empty arms.
"Prayer is the key to unlock the door, to the Master's heart so I won't worry anymore..." is in a song that our friend Kathy sings! Thanks Kathy! You have been a light to all of us! Spencer knows you sing it too!
Happy March Birthdays to Eric, Kara, Wes, Joel, and Stephanie! And to the baby colt that was born on Steph's birthday yesterday! We love you all! Spencer suggested the name Spirit!
Blessings and Bear Hugs,
Donna
Thursday, March 22, 2007 10:39 AM CDT
Hello,
I took Nicholas for his platelet transfusion yesterday.....he received O+ platelets that were donated on the 16th! The transfusion just finished going in and he was already itching on his back. One hive....then his shirt came up a little and I noticed more on his tummy but he hadn't even mentioned itching there.... Then I sat beside of him because I noticed his ears turning red! I buzzed the nurse and told them he was breaking out in hives. Well, they erupted then......all over his arms, thighs, down his legs, tummy, around his trach, and on his face. I had to strip him down and scratch everywhere at one time and feed him pop sicles at the same time!!! God gave me a dose of patience like I've never had before and I was able to remain cool, calm, and collectd! HA! I gave him another dose of Benedryl and we ended up giving him more hydrocortisone before they finally started to go away... It was very scary but he didn't have any difficulty breathing or nausea. This was the second most violent reaction he has had. Now, the major question I'm having is ....was he just allergic to the donor or is he developing allergies to the anticoagulents.......that remains to be determined!
Anyway, he was able to visit his school for a little bit! Nicholas asked, "Mom, you think they may be having recess and I'll get to go outside?" I didn't have a clue and when we went to his room, guess where they were! YES, at recess! He did get to go outside but only for a few minutes. The children all gathered around him and wanted to hug him and ask him questions! They all said, "NICHOLAS!" and came running! It was so precious! BUT Benedryl Grumpy Bear wasn't in the mood for all the attention! His teacher did let him help give out a spelling test! He felt important, reading the sentences with the spelling words and enjoyed the time there. He told them he would be back today! He wants to attend school so much but cannot. I cannot put his health in jeopardy. Jeff and I are both sick and that is bad enough let alone a school full! I'm afraid Spencer is getting it too.
Ok, for the rest of the evening....lets just say we spent our time in the ER until midnight and Dad had to have a stitch put in his head! Shhhh, Dad didn't want me to say anything!!! He is hard headed!!!! Now I have proof!
Any more drama, please stay away for a while!!!!!
Please remember all the precious little ones that are in need of miracles.....
Miracles, Blessings and Bear Hugs,
Donna
Tuesday, March 20, 2007 11:51 AM CDT
Hello,
Well, Nicholas must have been feeling badly during the weekend for he did much better yesterday! He even sounded much better! He was so proud of himself. He asked, "Did Michele tell you that I did good?" I told him yes and that I was so proud of him, and he replied, "I thought you might be proud of me!" Then, "I love you MOM! You're the greatest!" Awwwwwwwww. He is just so precious!
He also did well with a formal assessment from the school. We will know what his IQ is at the final meeting before the end of the year. I already know on the reading and comprehension part, he scored at 9.5 year old!! I was just glad he was feeling up to the questions! He did really great! We know he can do it! We know he is sharp as a tack! Now, if he can just remember what to do on math!
We will be getting platelets only unless the bloodwork shows differently! One thing I've noticed is that his bruises are gone! OH! What if......the platelets transfusion was just full of stem cells instead and they lodged in his bones and are producing marrow and the marrow is working hard to produce all three blood lines... White cells, red cells, and platelets! That is the MIRACLE we need...... That is my prayer! No, I don't own any rose colored glasses! I just know a God who can! God can do all things!
What is your prayer? What is your heart's desire?
I've been researching the Exjade! That is the medicine that is a chelator, it adheres to the ferretin and gets it out of the body. His feretin level is 15 times too high and the side effects of the Exjade could possibly be horrible. We are in a vicous cycle. He has to have the medicine every day of his life and he has to have the red cell transfusions in order to live! Just pray that Nicholas will NOT have any side effects from the meds.
Spencer has read over 100 books in 2 weeks! Wow! He has really done well! He is so precious! I love my boys! They are rotten to the core!
Keep praying for all the children.....and families! I am getting a terrible cold too, pray Nicholas nor Spencer gets it! Get on your rose colored glasses!
ASAP,
Donna
Monday, March 19, 2007 11:09 AM CDT
Hello,
Nicholas is on the low end of his red cells and its very evident in his thinking and processing. He cannot think of words he wants to say...or he cannot add 6 6.......
I told him that at some point he will be able to add some in his head. He said, "Mom, my brain just doesn't work!" This broke my heart and I realize its the truth. He does well to do what he does when he is at his peak! He cannot do his math without help. He will forget to carry over or borrow correctly. He gets really frustrated too. I know he isn't feeling well. My gut feeling is to make it as easy on him as possible. He does wonderfully most of the time and makes honor roll all the time...he just has to have help or hints to the next step. I'm not sure what will happen on his testing... I told him to just do his best and that would be great! He is such a sweetheart and so humble. If he thinks he has displeased you, he will act like a scolded dog and just cower down and say, "I'm sorry!" If he gets a problem wrong, he will say, "I'm sorry!" like he has made the biggest mistake in the world! Spencer asked me the other day, "Why does he say he is sorry all the time!" I didn't realize how often he said it until Spencer asked that! He does say it all the time......and we keep telling him it ok baby! He just wants to make everyone else happy ALL the time! He has the sweetest little spirit! He is a pure little angel! But he is breaking my heart......
We did get his molds made for his hearing aids. He was petrified! And yes he told the Dr he was sorry! He did let him make the molds and now they are ordered! He is a little apprehensive about putting them into his ears though! I told him he would be able to do it himself and he just looked really scared, made a face, and gulped! He is so comical sometimes! He also told the dr he loved him about 100 times! "I love you" are his most used words! He came home and told Spencer all about it! Yes, I took photos but left my camera home and cannot upload them today! Will post them when I rem to bring camera!
Spencer is still reading! He turned in around 40 more today! He reads continually! Well, he plays too! He and Nicholas will play and play! He will tell me the biggest stories! He is always the hero! He was also the dr this weekend and I was the patient with a broken leg! He is also Momma's little song bird and blessed us all on Sunday with "I'm in the Lord's Army!" For him to even get up in front of the church is tremendous progress, let along sing too! I still have to go with him but he is doing much better! School has been wonderful for him! He is my sunshine!
Remember all the FA children and the FAmilies....more and more are getting diagnosed! Rem Alex, he is beginning his 3rd bmt!!!!!!!! Can you imagine going through this 3 times?! Bless their little hearts! And John, who has been out of the hospital for over a year now and still not home for any length of time. These families are trully heros and God's finest!! I know HE doesn't have favorites! They just are extraodinary in my book!
ASAP (Always Say A Prayer) for miracles,
Donna
Wednesday, March 14, 2007 11:13 AM CDT
Hello,
I must have had my intuition on yesterday! They did not have any O platelets that were cmv- that they could release yesterday. I think they had some they were releasing tonight! Long story short, he received an AB platelet transfusion and broke out in hives toward the end of it! I had to give him more Benedryl! He was a grumpy bear as usual but I'm so thankful that he is ok now! He is a trooper!
He did get to meet Justin Hamilton from the Cleveland Browns!!! No. 25! It was so nice of Justin to take the time to see Nicholas! He autographed a football and photo for the boys! Thanks Justin! It was so sweet of you! Justin, you have your life ahead of you, make the most of each day! I know Beth is so proud of you! Be the best that you can be! God Bless you as well!
Spencer got to spend the entire evening outside with Dad! He told Jeff, "This is the best day of my life!" Here we go again!!!! Ha! Waterdog hunting is just tops on his list! Well, just under the 4 wheeler! I'm glad he had a good evening!
Well, keep on praying! God is the miracle worker!
ASAP, Always Say A Prayer,
Donna
Tuesday, March 13, 2007 8:21 AM CDT
*****************
UPDATE:
Platelets are 12k, hgb is down to 9.1! He wrecked on his little tricycle and scraped his head and knee! We are going for a platelet transfusion this evening if platelets are available....Pray Please!
*****************
Hello,
We are getting major blood work on Nicholas today. Checking thyroid levels, cbc, etc.....will post when I get any results....
I'm just thinking......I know that is dangerous! As his body is adjusting to the low counts it get harder to tell what his counts are. I can usually guess within 1000 of what his platelets are but cannot anymore! When his platelets were first dropping in the teens, he would have petechia, little red dots where the blood vessels break, all over his face. Especially when he coughed or was nausated. His body adapted to the low counts and now, his platelets can be down to 5000 and he will just have bruises. Last night I guess he has over 10 bruises on his legs. He will get tanked up on red cells and feeling betterand get to running and bumping into everything, therefore, more bruises! Sometimes, his bruising won't be that bad if he isn't very active and its hard to tell what his platelets are.
With the red cells, he will turn really pale, and sometimes get blueish gray around his mouth and on his forehead. Then, as his hemoglobin, hgb, gets really low, he doesn't feel well, gets irritable, cannot concentrate, and cannot think of what word he wants to use when he tries to tell me something... I have to be a hawk eye to really see what his counts are! His coloring isn't good today. He is pale and has big dark circles around his eyes, ususally looks worse when in the dark! He is usually paler in the mornings and as he get up and gets going, then his color will come back somewhat! Its too early for his hgb to be too low! His body is using up everything as it goes in and will require more and more transfusions and more frequent too. See why I'm praying for the marrow to be restored? Yes, it will take a miracle. I wish they could put in stem cells just like a transfusion, only pre-medicate him. Too high risk though.
I told you my thinking was dangerous!
I was lying down with Nicholas last night and he was so still. I asked him if he was asleep. He said, "No, I was praying for Marci!" She had asked him to pray and he did! He doesn't know what is going on with her and I didn't tell him but when she called last night, he knew something was wrong and kept asking her how she was feeling! He is so sweet! He said, "I prayed for her to feel so much better, like she was 15 years younger!" Wow! What a prayer! That would work! Then of course I asked if he prayed for me too! He said, "I prayed for everyone that I've ever met and for the ones I'll meet in the future too!" That covers a lot of people! Isn't it nice to be remembered in prayer?
Spencer is a pure little ham! I'm sure he has read over 60 books by now! The entire class has read 400 total! He has read 15 percent of them! Wow! He is rotten though!
Praying for all the families going through treatments of any type. Praying for peace, comfort, and wisdom for each family. If I could just wrap them all in a big bear hug, I would. The only way I know that they can feel it is by prayer. Jesus can let them all feel the hugs and prayers.
Blessings and Bear Hugs,
Miracles, begging for Miracles,
Donna
Monday, March 12, 2007 8:25 AM CDT
Hello,
We had a good weekend for the most part! Nicholas was talking about Camp Sunshine again! He asked, "Mom, do you think Joel will be there? I said, "Yes, I think he will!" Then he went through the list......Zach, Michael, Megan, Julia, Mary......Then talking about the girls, he said, "They better be there! or else!.... I'm going to be furious! They didn't show up last time!" SO girls, I've warned you! I told him that Julia had emailed and said she was going to try to come this year and he whooped and hollered! I'm not so sure the wedding with Alessandra is going to take place, another little girl Shay is calling him and I am hearing some, "I love you too"s!!!! I asked and he said, "Uh OH!" Rolling those big brown sparkling eyes and dimpled smiles! First day, it was, "She's my friend, Saturday, he told her she was his main squeeze! Ha! Oh yes, must be springtime love in the air!!! He's twitterpated! So funny!
Spencer and Nicholas did get to ride their 4 wheeler! Spencer did really well of course! Nicholas cannot use the throddle very well and Dad rigged him us a string to his foot and he did pretty good! He told Dad, "This is the best day of my life!" He just about says that every day! Every day we have together is blessed and a miracle, that is for sure!
Someone from Oregon said that they gave them a card to send to us that they had donated blood or platelets! That is a great idea, so if you give blood or platelets in Nicholas' honor ask if they have a card for you to send us! That would be great mail to get! Better than bills that is for sure! Ha! It isn't a requirement though, just give blood and platelets, I don't have to know about it!!! Thanks! We will be going this week for platelets, hope someone donated! Think about it! FEAR. Every week now, I have to depend on someone else to donate platelets. Do I dwell on it? No, I just pray that someone has committed to donate and trust in someone obeying the call of God. It is a real eye opener when they say, "They don't have any to release right now!" That is when the fear strikes my heart, dread punches my stomach, and my soul cries out to Jesus. I don't have anyone designated to donate for Nicholas, we are at the mercy of the blood bank and total strangers.
Praying for Sandra in Canada, Sandra in Cinci, Julia, Will, Ivan, Haylee, Will B, Lindsey, Jordan, and all the rest that are in bone marrow failure, or taking treatments. Pray for all the ones with cancer....
In HIS mercy and by His Grace,
Donna
Friday, March 9, 2007 11:37 AM CST
Hello,
My secret is out! Brooke said my journal was CRAZY!!!! Can you believe that? And I thought it was a total secret! I had hidden it soooooo well! But what does she know, she is young and just diagnosed! HA! She will totally understand one of these days but again I pray she doesn't! It does pay to be a little crazy though! Don't ask Jeff his opinion!! HEY! I saw that cheeky grin!
Well, seriously now! The sun is shining beautifully, its warming up, Spring is on the way! Nicholas and Spencer are feeling pretty good! Life is Good! I do not want to jinx anything but was thinking last night that it has been awhile since Nicholas was on antibiotics! That is the good life in itself! Yes, we do have miracles every day if we CHOOSE to look for them. Every day with my babies is a miracle to me. Even when hearing from a little imp that is asking, "Where is that doggone Super Mario cartridge?" Then when I told him that Spencer had it last and I didn't have a clue where it was, he said, "Well, Shoot my bullet!" Now where on this earth did he hear that? I couldn't help but laugh though! I never know what he is going to say! I do know to expect a huge gulping sound when I ask him if he has his homework finished though! Ha! He hates homework! The next phone call was, "Its WARM outside, can I go out?" He loves outside! I told him to go for a walk but he would have to go back inside until it get warmer and without so much wind! He is so ready for warm weather! I can't blame him. He only go out to the hospital! I'd be crazy if I had to stay inside all the time! LOL! Ahhhh, that was funny!
I did go and see Baby Braden and witnessed another tiny little miracle! He is ADORABLE! So precious and little. I can't wait to hold him! I'll post photos when I get a chance! He is precious! Nicholas asked me if he cried! He cannot stand crying, in any shape, fashion, or form! Especially babies! He asked me, "How come you can ignore them and I can't!" I told him they wouldn't let me hold another baby even if it was crying because I wasn't its mommy. I have explained at least a thousand times, that babies only cry when they need food or their diaper changed! He is learning but still can't tolerate crying!
Spencer on the other hand, loves babies! Or thinks he does until he sees me holding one, then a little flicker of jealously will flit across his face. He is so precious though!
Sometimes the Lord speaks and sometimes He is quiet. He is always there. He wants us to totally depend on Him! Its very hard to let go and fully trust, even though you know its the best thing to do. I always want to help things along I guess. I want to make things better! Mommys make boo boos better by kissing them away. If only FA could be kissed away! Instead we are totally helpless, new born babes ourselves depending on Jesus. He gives us what we need when we need it! He died for us. What more could I possibly ask for?
Miracles,
Donna
P.S. Please pray for Abel, Dylan, Charisse, Will, Sandra, Julia, Westin, Alex, Ivan, Jordan, Haylee, and Nicholas as well. These are the ones on my mind today. There are over 400 in the Prayer Bears that need prayers.
Thursday, March 8, 2007 12:17 AM CST
Hello,
Nicholas is rip roaring fiesty! He will aggravate me and just giggle and laugh! He loves to pester Mom!
Ms Trish could see a huge difference between Monday and Wednesday! For example: Monday, Nicholas couldn't focus, concentration was way off, and couldn't add 3 plus 3 when she wanted him too! Think about it! He STILL made 100s on some of his tests! Can you believe that? He is such a trooper! He amazes me so much!
Spencer actually was so congested last night that he lost his voice. Laryngitis for sure. I gave him some medicine and it helped tremendously! He couldn't believe it helped that fast! It was so funny! They are having a March Reading Contest! He has been reading extra books at the house and he told me yesterday he had read 30 books in 3 days at school! He was so proud of himself! He read and read last night and would make sure I wrote them down! He has read 10 at home! That makes 40! Whew! I can add! He is a sweetheart too! He receives a tally mark for each book! He said he had 4 stars too! He went to bed talking about it and woke up talking about it! He LOVES reading!
Baby Braden is closer home too! He has to stay a week locally and then will get to go home! Whooooo Hooooo! I can't wait to see him and hold him.
Praying for all the ones in BMT. Pray for the empty arms as well.
Blessings and Bear Hugs,
Donna
Wednesday, March 7, 2007 8:52 AM CST
Hello,
Nicholas' platelets were down to 5,000, his hgb was 7.5 and after a 10 hr day, he is now refueled! Thanks to the donor that was O and donated on 3/1/07!!! Thank YOU! They started the red cells and I thought he was going to have a major reaction. He popped out in a sweat and he asked, "Mom, why do I feel so hot?" Scared me! He began to heave and I had to vent his tummy. He didn't throw up but he was so nauseated. No hives though! It lasted about a half a hour then he was ok! Grumpy as he could be but ok! He gets so demanding and expects you to do it immediately and answer him pronto! Oh yes! He jerks our chain completely! He is the only one I know that says, "I want steak!" and gets it! They actually thaw out one and prepare it for him! REAL steak! NO he isn't spoiled! We are!
Spencer took his last dose of antibiotic yesterday but now has a terrible cold. He seemed some better this morning! He is a little jewel! He is so sweet and I love him so much! He is just so precious! He will kiss Nicholas when he wakes up in the mornings and will tell him good morning even if Nicholas is asleep! They miss each other and will just play and play when they finally get time together! I love to listen and watch them! Even if its hospital play!
I know they are so anxious for warm weather! Nicholas has already begged to go outside! It looks so warm out! It won't be much longer though! I can't wait either!
Will is feeling much better! Pray for Sandra as she begins chemo today. Pray for all the children going through major illnesses. Pray for the families as well. Its so hard on the siblings.
Lettem know you lovem!
Blessings and Bear Hugs,
Donna
Monday, March 5, 2007 1:00 PM CST
Hello,
We are doing ok! Spencer is much better and back to school we go again! I'm not going to ask........but I heard the flu is going around in his class...yes he was tested but it was negative. He has developed a terrible cold but seems much better overall.
Nicholas will get transfused tomorrow....probably both, platelets and red cells. Please pray for him.......
He is rotten! So loving and hugging everyone! He was telling Dad last night about wanting to go hunting!!!!?? If he did everything he planned, he would do it ALL!!! God love his little heart!
Also pray for Will, he has an infection in his system and in the hospital. www.caringbridge.org/nc/willpower is his site! Leave him a message and let them know you are praying! Pray for his mom, Kayla, that she will get some much needed sleep!
What on earth happened to the weekend? Where did it go?
Time flies when you are having fun huh?
Blessings and Bear Hugs,
Donna
Friday, March 2, 2007 12:23 AM CST
Hello,
Spencer woke up this morning and preceded to pull off his pjs! Dad came and got me and said, "Spencer has a temp!" He was 100.6d when I took it but he had cooled off some! I did get him in to see Dr B and guess what! STREP! I cannot believe this! Bless his little heart! I felt so sorry for him! Here we go again! I told them NO AMOX! They put him on Zithromax! We barely made it to Coeburn and he threw it back up! Hopefully, we will get more down him tonight! He was chilling really bad too! They tested him for the flu but it was negative since they didn't say he had it! I'm glad he is on some meds at least!
Nicholas was very pale last night and said he was exhausted! He has been getting up much earlier! I think that is what it really is! He is so rotten! I know his counts are falling though and I know he will probably need both platelets and red cells on Tuesday!
Praying for all the families that have childre with major illness. Its very stressful. We have to be the advocates for our children. If tests are done, be sure to ask the dr the outcomes. Ask for a copy of the reports! Don't leave it up to others to decide what your child needs, talk to the drs yourself! You know what your child's symptoms are and go with your gut feelings. If something doesn't feel right, then most of the time it isn't! If you are second guessing yourself, ask the dr! If you know in your heart something is wrong with your child, tell them immediately! If you suspect something, get it checked out! If the dr doesn't listen to you, find another one that will! They are only human too and get busy sometimes and not everyone keeps up with your child's test results so its up to you to fight for your child! Its easy to ignore and put off finding out something when actions are sometimes needed immediately. I have no clue why I had to write that but God does and He knows who needed it! Hope my little insights are helping someone!
God will give you the strength to get through each day! He gives you enough!.......Enough for one day at a time! Whether it be sanity, strength, grace, courage, love, wisdom, or faith, it will be enough for today's journey! He will never put more on you than you are able to bear.
Your journey is only complete with God in it!
God's grace is sufficient.
Donna
Prayer for the day: Jesus, please take us and mold us into the vessel worthy of your precious spirit! Give us strength for the journey ahead of us. My soul continuously cries for the healing of Nicholas. I know you can touch, speak, or just make it so, the restoration of his marrow! I have nothing to offer him in this life and I know You have everything to offer him but we love him dearly and want him with us for a long long time. In Jesus name, we pray!
Wednesday, February 28, 2007 2:22 PM CST
Hello,
Nicholas met me with a handful of tests when I came through the door last night! He was proud as he could be of 4-100s and 1 87! He was just so happy and full of himself! We are so proud of him! He is back to his old fiesty self, dipping his finger in the cornbread mixture and laughing! I'll scold him and he will laugh and laugh! He loves to pester and will keep doing it until you stop him totally! He is rotten to the core! We love him rotten! He will get blood work this week and his hgb will probably fall to transfusion level. He was complaining of being tired today but he was doing homework!!! After he finished his homework, he called me and was whooping and hollering to the top of his lungs! Tired? Yeah, right! He was just really happy he was finished with his homework! He will push himself up until the very second he is too tired to hold his head up any longer! Then, I know its red cell time! It makes for a very long day when he has to get both platelets and red cells! As you can tell, I'm dreading next week!
Spencer is doing great! He is Daddy's little boy that is for sure! He was outside with him all evening yesterday! I saw him helping Dad unload his truck! He loves to help! He is a super helper too! He only had to go a half day today and I think someone picked him up and took him to Pizza Hut! His favorite place on earth! He needs special treats every once in a while! He is such a big boy!
Angela, I'm sorry we were your nightmare the other night! Ha! That is too funny! I've done that though. Dream of one of the children and have to go tell them all about it! I think that is a God thing, letting us pray for others. Putting them on our hearts even in our dreams!
Pray for all the families going through difficult decisions. It helps to know someone is praying so be sure to let them know! God is good all the time and all the time God is good! He is good on the mountain, He is good in the valleys as well. He is always there and never leaves us, never. All you have to do is call on Him and HE will answer. He answers soul mail as well as knee mail! He hears the very whisper of our souls, when we cry out to Him, when we don't even know what to ask for, HE hears the moans and groans of our spirit. He knows the very intent of our heart as well.
More desire to inspire, let someone know you love them and are praying for them,
Donna
Tuesday, February 27, 2007 8:28 AM CST
Hello,
Wow! I don't know where to begin! Let me start off by saying CONGRATULATIONS to Stephanie and Brad on the birth of their firstborn son, Braden Neal, weighing in at 4 lbs and 4 oz and 18" long on Friday, the 23rd! He is real fiesty and pulled his feeding tube out! He is taking the bottle and off oxygen as of today! Praise the Lord! It killed me that I couldn't be there during the time but I was praying my heart out for them! Braden is a little fighter that is for sure and we are so thankful! Now Papaw and Mamaw are great grandparents! Wow! I'm a great aunt! Whoo hoooo! I'll have to sneak and hold him! The boys won't like for me to hold him! Very jealous!
Happy Birthday to Mamaw yesterday! Braden just about made it to her birthday! I took Nicholas for a platelet transfusion and we surprised Mamaw with a visit afterwards! She knew I was picking up Spencer but didn't realize that Nicholas would be with me! Heee Heee! She said it made her day! Mamaw we love you! I took Nicholas to a little pet store but the owner smoked! WE didn't stay long there! Nicholas said, "This is the best day of my life!" Then, when we visited Mamaw and Papaw he said, "This is the best day of my Grandest life!" HA! He is so funny! He was THRILLED to get out of the house I guess and play upstairs at their house! They love going up and down the stairs!
We did make it to the conference at Cincinnati! Barely though! We had trouble with the van! Jeff had to buy an alternater and then someone got it! We were running late and barely made it to the bus for the Aquarium! One of the guys happen to call back to the hospital and ask security to go and check the room again and they told him that someone turned in the part at another location! Thank God! Jeff totally missed the Aquarium dinner but did get the van repaired! We were so thankful to have the help of Susan's husband John and Jim, in public relations as well as everyone else! Thanks to the stranger that went and picked up a new part and brought it back to Jeff! That was so nice but it was the wrong part! We were thrilled to have the van back up and battery charging! It took a really long time and on the way home, it would die at every red light! It finally charged enough and we arrived home safely! Wow! What a trip!
Dr Rose had results from the thyroid study and 80 percent of the patients they studied had thyroid deficiencies! We will get getting NIcholas tested again! He was borderline several years ago! They also had significant growth when treated too! Overall, the conference was very informative!
It was nice to meet Jana Black! She is really nice in person as well! Also, we met several parents of FA children and can actually put faces with the names now! Barb and Kevin, Candace and Jesse, Joe, as well as a few
"old faces" we already knew! No offense Kristina!! Ms Negrin wanted to introduce Nicholas to Anthony, who has just had a bmt, but we weren't allowed on the floor and Anthony wasn't allowed off the unit! Big Bummer! It would have been nice for them to meet! Hopefully, we can all meet at Camp Sunshine! Anthony is suppose to get out of hospital today! Praying for them as well!
Yes, Nicholas got to see Jo and Jaci! He was begging to get off his feeder so he could hang out with Jo! Spencer got to pet the sharks and was thrilled! He had a grand time telling everyone at school yesterday all about it!
Please help me pray for all the children with FA! Oh how I wish there was a cure!
Holding on to God's promises and praying for miracles!
Donna
Friday, February 23, 2007 7:11 AM CST
Hello,
Please pray for my neice Stephanie, she is in labor and just 7 months along. I haven't heard anything today yet.
Everyone is on the mend! PTL! Spencer's bloodwork showed some major improvement! Not perfect but on the way there! I must have been glutting for punishment when I took him for blood work! He fought like a tiger! I should have known to at least wait a day between transfusion and his bloodwork but I was totally zapped after that ordeal! I'll have to remember that one!
Nicholas is doing pretty good. I told him that Jo and Jacy moved back to Ohio, he said, "FANTASTIC!" He wanted to know if we were going to see them tonight! I told him we would definitely see them on Sat! They are looking forward to attending dinner at the Aquarium too! I'm happy they are providing child care for the children while we are attending the meetings. I'm sure they will have a ball.
Praying for miracles......
Donna
Wednesday, February 21, 2007 9:12 AM CST
Hello,
Nicholas' platelet count yesterday was down to 5k, his hgb was 9.7, and his anc was 1125! Yes, he received O- platelets and we are thankful the donor donated them on Valentine's Day! What a blessing! You gave Nicholas the best Valentine that could ever be given! You gave from the heart and Nicholas needed them so much. We were going to go today but it worked better for yesterday and he sure needed them. I'm amazed at how God works things out! I shouldn't be though. I've watched God work all through this journey with Nicholas. He has provided the prayers we need daily. He will put Nicholas on someone's heart and they will help us pray, then on to the next family! He never lets one family help carry the burden for long periods of time either! It always passes on to someone else! He takes care of the smallest of needs. He feels the loneliness, He puts us in contact with different people and they have told us they were praying! It lets me breathe a little and the load gets a little lighter with each contact! I'm so blessed! God has blessed us beyond measure! If God puts someone on your heart, be sure to let them know! It really helps! Last night, after 6 hrs I was totally washed out! Nicholas wrapped his little arms around my neck and kissed me! It was just what I needed! He is so precious! He picked up my hand and kissed it too! Isn't he just the sweetest!?
Please pray for all the children and families going through major life changing health issues. It really hits hard and wears the families down. Be nice and do something special to brighten up their days!
Miracles,
Donna
Friday, February 16, 2007 11:02 AM CST
Hello,
Ok, I'm trying to get it together! But I'll probably forget where I put it!! Ha! I'm in slow motion! Making myself do the things that have to be done! Thank God there is a week end coming up!
Nicholas is rosy red cheeked and smiling big time! He is feeling pretty good since he got his red cells. Still a little junky but no temps right now! He still doesn't want to do his homework but will reluctantly! He is still making 1st honor roll! I'm sure this isn't news but it seems like forever since I've updated!!
Spencer was limping again last night and complaining with his knee. I'm going to get his tests results from Cincy and look over them myself. I know he is having a reaction to something....lots of possiblities but most like inflammed joints or Juvenile Rheumatoid Arthritis is also a possibility....Pray it isn't JRA! Pray it isn't anything! Just a reaction to Amoxicillin.....and he will get over it! He prayed the sweetest little prayer for Sissy Bear, his teachers, and for Ms Beverly, his assistant principle! So precious! Oh, the faith of a child. I need to have more faith!
He's still working on me! Making me what I ought to be! I love that little song!
Pray for all the ones facing BMT, or intense treatments! We all need your prayers...
Miracles,
Donna
Thursday, February 15, 2007 8:07 AM CST
Hello!
The local TV station followed Nicholas through a transfusion!!!!!!! Thanks Mary for helping get the word out! Mary isn't able to donate but she was able to contact the TV station and get them set up to raise awareness for blood/platelet donors! Seeeeee, Everyone can contribute even if we can't get your blood! WCYB.com Click on New Center 5 Webcast then Click to View Archives and look on Tuesday at 5:30 pm and the 6:00 pm. Someone also saw it on Wed. 12:00 pm! You have to have RealPlayer in order to watch the video! I cannot get the link to work directly!
He is a STAR! He did a super job and was such a trooper! He also fell head over hills for Ms Tara Taylor! He wanted to give her a Valentine and robbed a candy bowl for her! She did a great job as well. Thanks Tara and camera man Brent!
Nicholas did get his platelet transfusion AND a red cell transfusion too! He was really irritable after the platelet tx and was mad because I wouldn't tell him he could stay there for 5 days! It took two hours of red cells for him to begin feeling better and eating his steak!!
The Blood Mobile Unit will be in our area, Food City and Mtn View, please go and donate!
To donate platelets, please contact Marsh Blood Bank, Julia Davis , 423-224-5888 and schedule your appointment and become a regular donor. As Nicholas said, "I want EVERYBODY in the land to go and donate!"
Sissy Bear got a good report from her heart caterization! Whew! Thank God for another miracle! I'm totally wiped out! I'm not ever going to say..."What ELSE can happen?"!!!! I don't want to know! Dad and I are just totally tired and exhausted! As Kristen said, maybe we can enjoy some coasting time!!! I'm definitely ready for a slow down.......and sleep! Sleep would be a miracle too! Ha!
Miracles in the making,
Donna
Monday, February 12, 2007 8:02 AM CST
Hello,
We are HOME! Nicholas let out a "YeeeeeeeeeeeHI!" and Spencer was all smiles...We blew kisses to the house we were so glad to be home! All Spencer talked about was that he wanted a PB & Jelly sandwich when he got home! He missed his PBJs!!!!!! He was starved and really ate well all weekend. He was one happy little camper and proudly showed off his iv battle scars to anyone interested in seeing them! He is such a sweetheart! He is doing well now, jumping and playing and back to his sweet little bossy self! His giggles are sure music to my soul!
Nicholas did great during all his procedures. He is growing up on me! He did his ct scan without sedation and I'm so proud of him! He told everyone! He was devastated when he had to be put to sleep for the mri on his heart and liver. He cried and cried but did ok. He was really worried about Spencer too.
Nicholas will have to go for a platelet transfusion (tx)
tomorrow and we will get cbc results to determine if he will need a red cell tx as well. I'm very tired and haven't recovered from this past week and have to go right on with the show.....No time to rest! God is good and we are so thankful for all the miracles last week. I'm so thankful that Spencer's wasn't an infection. I'm so happy he didn't have to have surgery. Thanks for all the prayers.
Miracles in the making,
Donna
Saturday, February 10, 2007 11:14 PM CST
BEARS ARE HOME!!! PRAISE THE LORD!
TALK ABOUT HAPPY BEARS!! BEARS ARE SO HAPPY TO BE HOME AND KEEP SAYING IT.
SPENCER WAS RUNNING, JUMPING, AND DOING GREAT UNTIL......DONNA MENTIONED HOW WELL HE WAS WALKING. HE STARTED LIMPING AND DRAGGING HIS LEG AND SAID, "I'M NOT DOING TOO GOOD!" DO YOU THINK HE MIGHT HAVE ENJOYED ALL THE EXTRA ATTENTION!!!!!!
MAMA BEAR WAS HAPPY, BUT VERY TIRED!
PAPA BEAR IS WALKING SLOWER...PERHAPS BECAUSE HE IS GETTING SO OLD....HMMMM....TODAY! HAPPY BIRTHDAY, JEFF!!!!
THANKS FOR PRAYS AND CONCERN.
SISSY BEAR
Friday, February 9, 2007 11:15 AM CST
Sissy Bear here!
Good news! Spencer did not have infection; therefore, no surgery. Just bad inflamation. They have plans to come home this eve. I am sure Donna, as well as the others, will be happy to be home.
Thanks for prayer.
Sissy Bear
Thursday, February 8, 2007 5:24 PM CST
Sissy Bear here again!
Spencer has been in ER all day; he is going to be admitted this eve. He has trouble walking on right leg; fluid or something is on hip. They tried to go in with needle to draw fluid out, but had a problem. A different doctor is going to try again later; I suppose tonight. They are going to test it, so they will know how to treat it. Jeff was with him in ER while Donna was with Nicholas getting MRI. Both were under anesthesia today and Spencer will be under again after the other wears off!
I talked briefly with Donna; please pray for them. God holds the future in His hands. He makes no mistakes.
Thanks for prayers and support.
love,
Sissy Bear
Tuesday, February 6, 2007 11:11 PM CST
Sissy Bear here!
Thought I would let you guys know that I talk to Nicholas every night. He is going through his tests like a little trooper as always. I asked him how the platelet transfusion went; he said as well as always! He sounds so grown up! He pulled one of his teeth during transfusion!!!
They changed his mickey button-gj tube yesterday; he was not too happy about that. He said he was so upset that Donna could hardly calm him down. He told me if I had to have it done, I would know what it felt like!!!! I told him that he is doing much better than I would do and he is much braver than I. He said he wasn't so sure about that.
Tonight when I asked to talk to Donna, he fussed at me big time. He is so funny.
It had already snowed 3 inches there; they are expecting 3 in. more!!! They have to travel a short distance to the hospital, so pray for their safe travel to and from hospital.
Pray for Donna; she has a headache and sounds stressed out. I know there is strength in the Lord.
Thanks for prayers and support.
Love,
Sissy Bear
Monday, February 5, 2007 9:15 AM CST
Sissy Bear here!
Nicholas and family had a safe trip to Cincinnati yesterday eve. He will be there for 4 days of testing with the last one Thurs. morn. They will probably come home after that last test.
Thought I would let you know what is going on so you would not think the worst and worry too much.
Please keep them in your prayers. Daddy Bear and I visited yesterday morn. before going to church and I felt so sorry for Donna. She looked as if she were going to cry at any minute.
Nicholas was his fiesty self though. He told Daddy Bear that he had brought an alien into the house; he pointed toward me and had a big laugh. Then he pointed toward my tights(it is cold here! brrrr....)!!!!!!! Later, he climbed up in my lap and said, "Sissy Bear, you know that I was just kidding, don't you?" He reminded me of Wesley Brent, another nephew. Wes would do the same thing; he would tell a joke about me and then he would hug me and say, "You know I was just kidding." I am blessed with such sweet nephews and nieces. I am the most blessed aunt in the world!!! I love them so much. I often wonder if any of my aunts or uncles love me as much as I love mine....I don't think so.
Spencer is with them; his hives are disappearing slowly!!!! Donna wanted him with them bc of this reaction with the med. ER told her there is a possibility of another round of hives..I pray not. I have never seen anyone with so many hives!!!
Don't worry...pray for them through this stressful week of testing. Hopefully, Donna will be back to update next time. If there is anything urgent to pray about, I will do my best to let you know.
Thanks for prayers and concern,
Sissy Bear
Thursday, February 1, 2007 11:09 AM CST
Hello,
I went home to a giggly little fellow that just laughed at everything his teacher was doing! Well, she was laughing so hard that tears were rolling! Laughter is the best medicine! It sure was a different tune to the past couple of days and a welcomed one at that! It also helped ease the pain of one little fellow not doing his homework properly and not doing his best on his spelling! Oops! After the teacher left, he said, "Mom I should be ashamed of myself!" Oh! I couldn't help but laugh! He is so funny! Yes, he gets to retake the test! Thank Goodness! Well, he HAS had a rough time but now he is feeling much better! He won't have an excuse this time! He is rotten! Typical 8 yr old? Oh yeah!
You will not believe me but guess what happened next......
Spencer broke out in hives......at school, no one notified me! He was worse last night and Benedryl did the trick but he was broken out this morning too. He is now medicated up and sleeping the hives away! He is definitely allergic to amoxicillian. Goodness! What next? Who knows! If I didn't live it everyday, I wouldn't believe it either!
Spencer saw Mt. Olive and wanted to know what Mt. meant. I told him Mount and that it was an abreviation and asked if he could think of another one......he said, "ER!" What a life! Aren't you sure you want to come along for the ride?
As in...the other evening, Spencer and Nicholas were playing.....Spencer was taking care of Nicholas' "Dog"...I heard Spencer say.."He has FA and is a part of the Fanconi Anemia Research!" I guess he has heard it enough! Next generation of fundraisers?
Thank you all for scheduling a donation day in your life. I know its hard to miss work and drive for an hour, donate platelets for 2 hrs while under a warm blanket while watching a movie or napping, shopping for a couple of hours or more, eating out at your favorite restraunt, and then having to drive another hour to get home but its worth it! It makes you feel good about yourself, you've actually made the first step toward helping someone else. It will boost your ego! You have given LIFE to someone else if God blesses the transfusions... You have actually taken part in an ongoing process that continues to give even after you have given. It will boost the recipient, as in Nicholas, make his platelet count go up so he can stop bleeding inside. If it is blood, it rejuvenates him back to life! Back to a little giggling, rosy red cheeked, smiling imp that continues to bless all that come in contact with him. He inspires others to give. This starts the process all over again....see how big this snowball is growing? Please give today and be the start of a new snowball.....
In the winter, we can build a snowman,
Donna
Wednesday, January 31, 2007 8:18 AM CST
Hello,
Thanks Sis for updating for me. WE have survived, but barely! I'm still really weak but I think I'll make it! Nicholas and Spencer have been so sweet to me and I know they have been worried as well. Nicholas is feeling much better and back on formula. He is tolerating it much better. He must have had that stomach virus and gave it to me! He was fiesty yesterday and told his nurse that she hadn't gotten a thing done! We just laughed! It was wonderful to hear him singing and sassy! He is too funny!
Its so scary to have a child that is bleeding and no platelets available......or to have platelets available and have them contaminated! Evidently the severe diarrhea caused his intestines to bleed. It was scary. He was dehydrated as well. He kept asking for water. If he felt as bad as I did then I'm heartbroken that he felt a tenth of what I did. Bless his little heart! He goes through so much and still smiles and is happy!
Thanks to Sissy Bear and Mary for rallying the troops and we are getting calls that people are going to go donate. Thank you, Thank you, thank YOU! If we can get some donors to go on a regular basis, that would be wonderful. To think they lost their entire supply of platelets is sickening! Ironically, they flew blood products from,...guess what the name is.....LIFE Share Community Blood Services, Elyria, Ohio! Thanks to whomever donated on the 24th of January and was 0 !!!!
I do not know why they closed the Norton Blood Bank down. I feel the need for a total blood center is great! Blood and Plate Aphresis Center would be beneficial to this entire community! Every time we go for platelets, there are several more getting transfusions! Cancer patients, for anemia in the elderly, the need is very high in our area!
But in the mean time, call 1-424-224-5888 and schedule your appointment today.
Blood and Platelet donors,
Blessings and Bear Hugs,
Donna
Monday, January 29, 2007 5:28 PM CST
Sissy Bear here again!
Platelets were flown from OH, arrived 3 AM; his transfusion finished up about 7:00 AM. He received O+!!!
He is home, but he is still under the weather. I just called and he is already in bed asleep. He cannot tolerate his feeding; he is chilling. I'm afraid he has that virus that has been going around.
Daddy Bear and I just got back from donating platelets. We would do anything for this child. He has us wrapped around all his fingers, not just the little one!
I learned something today!!! They took blood from one of my fingers on my right hand. The count was too low! The nurse told me that sometimes if they test the blood from the other side, it would be different. Yes, I wanted it tested. I was there to donate platelets one way or the other. WELL, sure enough....4 to 6 points higher!!! They have no explanation for this. Remember this the next time you donate.
Keep praying....
Sissy Bear
Sunday, January 28, 2007 3:25 PM CST
SISSY BEAR HERE!
NICHOLAS IS NEEDING PLATELETS TODAY, BUT THEY DON'T HAVE O+; THEY ARE RELEASING SOME IN THE MORNING AT 7:15. THAT WAS THE FIRST PLAN-TO WAIT BECAUSE HE HAS HAD SEVERE REACTIONS TO A+, AND THEY ARE TRYING TO JUST GIVE HIM 0+ OR O-. BUT....
NICHOLAS BEGAN VOMITING AND DIARRHEA,TEMP OF 101.? LAST NIGHT AROUND 11:00. THIS MORNING BLOOD WAS IN STOOL, SO THEY DECIDED TO GIVE WHAT WAS AVAILABLE-A+(HE COULD HEMORRHAGE SO IT IS HEMORRHAGE VS POSSIBLE REACTION). DONNA TOOK HIM TO HOSPITAL EARLY FOR CBC AND EXAM. PLATELETS WERE ENROUTE; A CALL CAME "PLATELETS ARE CONTAMINATED! DO NOT USE!"
MEANWHILE, NICHOLAS WAS HOOKED UP ON IV; BOTH EARS ARE INFECTED, TOO! SPENCER IS ON ANTIOBIOTICS FOR THE SAME; HE WAS SICK LAST WEEK WITH VOMITING AND EAR INFECTION. HE IS DOING BETTER NOW.
BACK TO PLATELETS! MORE WILL BE RELEASED AT 8:00 TONIGHT. NICHOLAS' LAST BM HAD LOTS OF BLOOD, SO THEY REALLY DON'T HAVE A CHOICE THAN TO TRY THE OTHER PLATELETS, MAYBE ANOTHER RED CELL TRANSFUSION. NICHOLAS WILL BE IN HOSPITAL OVER NIGHT AT LEAST.
THAT IS DONNA'S FEAR-THAT HE WILL HEMORRHAGE TO DEATH. PLEASE PRAY FOR HER, TOO. SHE IS SO TIRED. PRAY FOR JEFF AND SPENCER, TOO. IT IS TOUGH ON THE WHOLE FAMILY.
PRAY HARD FOR THIS TRANSFUSION. IF YOU KNOW OF ANYONE WHO CAN GIVE PLATELETS, PLEASE ENCOURAGE THEM TO DO SO. CALL 1-423-224-5888 TO SCHEDULE A DONATION. MUST BE WITHOUT ASPIRIN FOR 48 HOURS(IT DESTROYS PLATELETS!)
YES, I AM BEGGING FOR PLATELETS. WE ARE TAKING THIS A DAY AT A TIME, AND EACH DAY GROWS MORE PRECIOUS.
THANKS FOR ALL YOUR PRAYERS AND SUPPORT,
SISSY BEAR
Thursday, January 25, 2007 9:35 AM CST
Hello,
Spencer is very sick with a severe ear infection! He is vomiting and drinking/eating very little. He received an injection of augmentin in the ER and now on antibiotics for 10 days. He wasn't very perky this am either! He did eat a little for me and took his medicine really well! He is so sweet but it kills me to see him this sick! He didn't sleep well last night either! He would turn toward me and touch my hair with one hand and my face with the other! Then, I would get kicked! HA! He tossed and turned all night long! His temp is going down now though. He got up to 102.4d! I'm glad school was closed today! That gives him an extra day to get better in! This is the first time I can remember that he isn't eating well! Even with the flu, he would eat something!
Nicholas is as perky, rosy red cheeked, and as fiesty as he can be! I love seeing him this way! He is at his best right now! I can see a slight color change and feel like he has peaked and on the down hill slide now! He will be get platelets this weekend, probably Sunday.
His ferretin(iron) level is too high! That is caused because he is transfusion dependent! Iron acculumates from the red cell transfusions and you have to put them on another med in order to get rid of the ferretin! Goodness, another med to keep up with! But if it will help, then he can get tranfsusions! If the ferretin acculumates in an organ, it can damage it! We will have to watch the liver, kidneys, and heart. But that isn't really anything new! We have to get rid of the extra ferretin!
Praying for all the children, the families, the dr and nurses as well. We are all tired, sleepy, and cranky from lack of sleep! I think we need a vacation! Beach sounds lovely to me! Hot and muscle relaxing! Actually, sleep sounds good to me! anywhere!
Praying for miracles, expecting something to happen!
Donna
Monday, January 22, 2007 1:42 PM CST
Hello,
Friday, when I went to pick up Spencer, he was sick! He had a temp of 102.5 and came down with a terrible cold. He was pretty miserable all weekend. Saturday, Sissy Bear kept him for me while Nicholas was transfused with Platelets and Red cells. Nicholas' platelets were 26k and hgb was 7.6. It was suppose to be icy on Sunday so we went Sat.
Spencer went to school this morning and I went to check on him at lunch. He was a little warm but seemed to be feeling better! He said his nose had ran some! He was so excited to see me! I gave him more meds! Hopefully, he is on the mend! He is so good about washing his hands and letting Bro know he has touched the computer, book, etc! I've cloroxed everything!
Sunday, Nicholas asked why Spencer was sick and I went through the cold process with him! Then, he asked, "Why did God make me the way I am?" I told him I didn't know and asked him why God made me the way I am! He rolled his eyes and said, "ONLY God knows!" HA! I couldn't help but laugh! He said it just perfect too! OH! He is so funny! I knew you all would love that one!
Only God knows....
the depths of my heart, the prayers for my baby, the groans and moans of anguish that dash my soul.
Only God knows the heights and depths that a mother would go.....
Only God knows everything!
Donna
Friday, January 19, 2007 8:43 AM CST
Did you like that video? He just dances to his own tune! That was a long time ago! Wow! Time is flying by! I realized it when I was trying to do his history! I didn't realize we had been transfusion dependent for 2 solid years now! I can't believe it! On one hand it has been soooooooo long and on the other hand I cannot believe how time has flown! I guess when your head is buried in the hospitals all the time, you just cannot keep up with everything! I haven't a clue what is going on anywhere else! I can't even keep up with my own family....I guess if they want to know about us they will call....if not, then.......? I don't ever hear from most so I guess they don't want to know! I will just keep all the hugs to myself! Ha!
I sure did get more last night! Oh they were perfect! Sweet little kisses and hmmmmm hummmm hmmmm hugs from both my precious angels. Most precious words on earth..."I love you Mom!" How they melt all the worries and fears away. Faith restorer! Ego booster that is for sure! The closest you can get to a Jesus hug! Pure little sweet hugs and hands that will pat your head and face! Ha! Are you smiling? I am!...and still floating!
Praying for a family from BSG with a newly Leukemia diagnosis! Goodness, too many from our area with cancer! Pray for all the families traveling to and from St Judes!
Praying without ceasing!
Donna
Friday, January 19, 2007 8:43 AM CST
Did you like that video? He just dances to his own tune! That was a long time ago! Wow! Time is flying by! I realized it when I was trying to do his history! I didn't realize we had been transfusion dependent for 2 solid years now! I can't believe it! On one hand it has been soooooooo long and on the other hand I cannot believe how time has flown! I guess when your head is buried in the hospitals all the time, you just cannot keep up with everything! I haven't a clue what is going on anywhere else! I can't even keep up with my own family....I guess if they want to know about us they will call....if not, then.......? I don't ever hear from most so I guess they don't want to know! I will just keep all the hugs to myself! Ha!
I sure did get more last night! Oh they were perfect! Sweet little kisses and hmmmmm hummmm hmmmm hugs from both my precious angels. Most precious words on earth..."I love you Mom!" How they melt all the worries and fears away. Faith restorer! Ego booster that is for sure! The closest you can get to a Jesus hug! Pure little sweet hugs and hands that will pat your head and face! Ha! Are you smiling? I am!...and still floating!
Praying for a family from BSG with a newly Leukemia diagnosis! Goodness, too many from our area with cancer! Pray for all the families traveling to and from St Judes!
Praying without ceasing!
Donna
Wednesday, January 17, 2007 9:30 AM CST
Hello,
I went home and got the biggest hug and the longest kiss that just made me smile a mile! He wrapped his little arms around my neck, they are the perfect length and the hands are turned in just enough to hook!, and kissed my cheek and I just melted! All the worry, all the stress, all the everyday mess just washed away and I floated for a while! Yes, he tends to do that! He always has! He gives the best hugs and kisses! Now, calm down, I know that just made you all want one! Toooo bad, you'll have to stand in line! Then, not to be out done, Spencer decided that he could be just as sweet! Oh yes, Heaven at our house! Jealously does have its pluses!
The other night, I was getting goodnight sugars from Spencer and Nicholas turned his back on me! I ask him what was wrong and he said, "I was jealous!" Ha! At least he admits it! Dad ususally has both in his lap at the same time too! Spencer did get to go work with him Monday when he was out of school and they really enjoyed their day together! We met for dinner and took Nicholas back some steak and he said, "Mom! That is the best steak ever, can you bring me some more?" He ate the rest yesterday and asked for more again last night! He loves steak! No, he doesn't even eat it, just chews it and spits it back out! He gets the taste of it anyway! I think he just needs the salt intake! Salt and rolaids! Those are his main courses!
Pray for Abel, a little baby, 18 mts old, has neuroblastoma and at St Judes. Pray for the family.
I know that numbness that is a constant companion and its only by the Grace of God that Jeff and I have survived the last 8 years. How much longer do we have? We have until God says it's enough and the transfusion do not work any more. Until then, we will pack as much punch into every moment that we possibly can! Live, laugh, enjoy, and make memories. We have exhausted all meds, we have researched until I can't anymore. Yeah right! I will always be searching for something to cure my baby! I will never stop looking, listening, reading, hunting, pecking, never! I would love for someone to do a bmt with just transfusing the cd34 cells! No chemo, no radiation, not killing what cells he has to fight off infection....You tell me why that is not possible! I know the medical drs say it is not possible but I will continue to ask! I know they think I'm crazy but they aren't desperate! I am! Yes, I have actually asked for a med free bmt! Ha! Yes, I will probably ask again! It pays to be crazy some times! Yes, I know all the medical issues, but with God all things are possible..... I know they think it would be a waste of good stem cells.......but with God all things are possible.... Have they ever tried it before? Empty bones.......no counts, no marrow. Would a dr even consider it? Yes I'm crazy but that's love for ya! and a total belief in God.
God said it and I believe it...
ALL things are possible with God.
Praying for miracles, Praying for a dr to get a gut feeling....an inspiration, or a new idea. If we do not try, we do not know. I want more of those hugs,
Donna
Tuesday, January 16, 2007 9:07 AM CST
Hello,
I just received a phone call from Nicholas. He was crying and barely got out "Mother?" Of course my heart stopped beating! I asked him what was wrong. "I'm worried about something!" Still afraid to breathe, I asked what. "Homework!" Breathing! I told him to do a little at a time and had him laughing before he got off the phone! Oh, how he hates homework! I'm surprised he even feel like doing anything let along make 1st Honor Roll! 4 A's and 1 B!!!!!!!! Yes he does great and is a constant reminder to me that if he continues to do his best even when his Hgb is low, then what excuse do I have!! Git R Dun! That is his usual motto! but when it comes to homework....its WHY do I have to do homework? Good question!
I could ask WHY to lots of things but it is totally useless to ask WHY! I could ask lots of questions......and do.....but I also know God's Plan isn't mine own. It's all a God Thing....I'm too little to contemplate HIS plan. If we could see the whole picture, what would we do differently? We don't know everything and never will. That is why God is God! I just pray for God's guidance, wisdom, courage, and grace. He supplies every need. Not my wants but yes, my needs.
Pray for all the ones going through transplant, its never easy. Pray for the ones getting treatments. Pray for the families. Pray for the empty arms.
Miracles happen every day,
Donna
Monday, January 15, 2007 7:41 AM CST
Hello,
As you can tell that poem was written very eary, just after diagnosis! When we thought he could have his transplant! When we thought he had a chance for a NEW LIFE! His new life will not be earthly unless we get our miracle. Am I in despair? No, I'm just being realistic. As long as there is breath, there is hope for a miracle. Hey, Larazus was dead for 4 days! Jesus rose him from the dead! Only with Jesus do I have hope. I will see him again either way!
Sunday's cbc resulted in platelets dropping to 4k! Hgb has dropped to 8.4 from 10.8! Yes, we did get a platelet transfusion! Sissy Bear went with us and Nicholas quarreled and quarreled! Without Benedryl! Ha! He was fussing because she wasn't ready! He said, "Sharon Ann!, you know you can't delay us!" "If we don't leave, we will never get the transfusion done!" Oh, it was so funny! I couldn't help but laugh! Then, when we got to the hospital, he kept her hopping! He would have to say "por favor!" before she would do it though! He was definitely King for the day! Yeah, right! Who am I kidding? He is King all the time! Every day! Ha!
What would I say to a newly FA diagnosis? "I would love to tell you that it gets better!" You have to lovem while you have them! Soak up every second that you can and make memories.
If you have a healthly child, fall on your knees and send up Thanks to God for that special blessing! Tell them you love them, hugg'em, kiss'em, call them, let them know! I thank God that Spencer is as well as he is too. I just held him in my lap this morning and hugged and hugged. Wonderful feeling to love my babies! I also thank God for Nicholas and all the blessings that he has brought to us as a family, and has allowed us to share him with you.
What more do you want HIM to do?
Miracles,
Donna
Thursday, January 11, 2007 7:01 AM CST
Hello,
Nicholas is still on the mend and getting fiesty! He is so adorable! Sweet and very loving too. He is like a totally different little boy! Back to his normal sweet little self! He loves his new nurse Karen and they planned a big surprise for me today! They are making cupcakes! Karen asked me if it was ok! He can definitely keep a secret! He hadn't mentioned even a hint about their plans!
Went home the other evening and Spencer began throwing up and we thought he was getting that virus but he didn't! He was ok yesterday and last night! I was glad they were off yesterday from school though! Yes, it snowed and schools were closed! Today its back to normal.
Out of three of us, I was the only one that could donate platelets yesterday! I was thrilled that I could do it. My face flushed up last night though and I got a headache. It must be the anticoagulent they use. Pray I'm not getting allergic to it! I didn't feel well at all! This morning, I'm lots better but still dragging a little! I wonder how on earth Nicholas feels when he gets the transfusions....bless his littel heart! It is no wonder he gets grumpy!
Praying for all the ones getting treatments. Praying for Randy as they get ready to go to Duke for treatment and pray for him a bone marrow match too. Pray for the empty arms......
Don't forget to take an umbrella if you are praying for rain!
Expecting miracles,
Donna
Tuesday, January 9, 2007 2:00 PM CST
Hello,
Nicholas is feeling much better! Back to his little bossy self, barking orders, and making everyone hop to his tune! I'm so glad! I'd much rather be hoppin to his tune than running to the bathroom with him! He is gradually going up to his normal feeding rate and I'm so thankful. I told them to pick up their toys and Nicholas kept asking, "When can I stop! I'm tired! I want to read my book!" He is still very tired and I realized just how tired when he went to sleep in no time last night! I just lay beside him and looked at him, kissing his hands and feet. He stirred and turned toward me...so precious. I know God hears my mourning and groans. Oh Lord that thou would bless him with marrow!
Sissy Bear called the blood bank and they are needing blood as well as platelets! Please call 423-224-5888 and schedule your donation today. Thanks! Make sure you tell them its for Nicholas! That will let them know I'm trying to get donors at least!
Pray for the sick, the lonely, the broken hearted, and their families.
Pray without ceasing,
Donna
Monday, January 8, 2007 8:46 AM CST
Hello,
Nicholas is feeling much better. He did get a platelet transfusion Saturday. The hospital was full and we had to get them in ER! Nicholas was upset to say the least! So we made it all better by going to a birthday party! He did have some fun! He is tolerating his formula again but it is a slow process. I went up 2 cc last night and he woke up nauseated and hitting the bathroom at 5 am! I think he is finally over it though...if it was a 24 hr virus, it took him 9 days to get over it! I'm not over it though! Ha!
We did have a wonderful uplifting, spirit rejuvinating, heart warming, peace fulling service on Sunday! Papaw was blessed beyond measure and preached about "Having the Key to the Kingdom!" The key of daying repenting, and forgiving. I just can't put into words..its better felt than told.
I'm really saddened this morning with the passing of one of our federal inspectors, Lewis Hinch. He had a brain aneurysm on Thursday. Please pray for his family.
It pays to be ready at all times to stand before the King! Get ready and stay ready! Say YES to Jesus, ask HIM into your heart today. Eternity is a long time. God is good all the time!
Praying for miracles, expecting healings....
Donna
Thursday, January 4, 2007 10:11 AM CST
Hello,
What to write? SOStuff! Tried formula yesterday but after about 3 hrs he was retching horribly and gas just rolling off his tummy so it was back on pedialyte for the night. We will try again today...we have to get some calories in him. He is so hungry.....and wanting to eat everything he can....
As far an I can tell with his bloodwork, there isn't anything that is jumping out at me saying..."THIS IS WHAT IS WRONG!" Will just have to wait on the tests to see if anything develops..and go from there. Could be a virus...but my gut feeling is that it isn't. He keeps saying he is so tired. He was a little more perky for a while but went sleep really quick last night. His face is slender now..I can tell he is losing weight! Oh, I hate this!
Spencer was acting very shy with the new nurse this morning. Karen is now in training...hopefully, she will stick with us! We must be BAAAAADDDDD!! Ha! I'm just checking to see when he is going to get on the AR program! I'm going to have to insist evidently! Half the year is gone for goodness sake!
Please remember Randy, he leaves for Duke, 1/11....
Remember the family of Paul Czar, he passed away yesterday. That makes 3 in our community within two weeks. Cancer is bad! I hate it with a passion!
Praying for miracles, expecting a healing......
Donna
Wednesday, January 3, 2007 10:17 AM CST
Hello,
Nicholas has perked up somewhat but we just put him back on his formula.....and yes, he still has diarrhea. We did get samples to test and cbc. His platelets are 52k today! (Just 5 days after tx!) Whooo hooo.....they drop on an average of 20k per day...and that means....we cannot wait until Monday to do bloodwork again. Yes, here it is the weekend and we are going to face a tx! Great! I'm getting a headache just thinking about it!
Spencer's first day back today! I hope he enjoys it and has fun! I'm sure he will. He enjoyed his Mamaw's attention yesterday! She brags and brags on him! He loves it! Who wouldn't???
Praying for all the ones with this sick disease. Its a funless roller coaster that is for sure! There are lots of screaming, but only on the inside. Lots of scary uphills and swift downhills with major bumps along the way. The only fun part is the hug afterwards. There isn't anything on this earth to compare to those little arms wrapped around my neck and the little warm kisses. His little arms have super powers that just push the heavy weights and they just roll off my back! They can knock sorrow back out the door, they can knock the "what ifs" off track and get the engine back to running full speed ahead, with sunshine beaming down! Chanting, "Jesus, you can do it! I know you can!" Sparkling little eyes full of mischeif, smiling little faces, they do have the superpower to bring happiness to us. They are definitely my little Super heros! When is the last time you were told, "Mom, you're the best!" Yes, I'm now floating on the clouds! That's what super heros can do!
Blessings and Bear Hugs,
Donna
Tuesday, January 2, 2007 1:33 PM CST
Happy New Year!
Our Non-happy new year began with Nicholas vomiting and diarrhea all night long. I had to put him on Pedialyte and tried him back on his formula last night and he began again within an hour, so sick. Soooo it is back on Pedialyte and he sounds really weak today. He told the sitter he didn't like her! He is not in the best of moods. I think she got some water in his ear and he didn't want a bath, all the aggravation equals to one little grumpy bear fussing....and asking for everything imaginable to eat. He is hungry! Bless his little heart! I'm so worried he has developed an allergy to the formula or back to my original thought that he had that stomach virus....OR he is getting another molar through the gums! OR.......as usual, its always something....pray that it is simple...like getting a molar! Pleasse!!
Spencer is doing great and sneaking in kisses while his Brother is sleeping! So precious and sweet. If he goes anywhere with someone, he always brings Nicholas back a little gift. I told him this weekend that Nicholas got the best brother in the world! Spencer did get to race on a little raceway and went to an aquarium this weekend. He really enjoyed his Dad time together! We also got to go to a Rainforest Zoo...they really enjoyed it! Lots of snakes and no people! Nicholas ended up with a stuffed bat he named Batty! It is huge! Spencer ended up with a little sack of rocks! They loved it though! At least it was a change in scenery. They know how to pull the heart strings that is for sure....
One really cool email from a volunteer at camp said....."I downloaded his "song" into my ipod! I absolutely love it. Anytime I need inspiration or a feeling of power and energy I listen to it!" Thanks Melissa, that actually brought a smile to my face today.
Thanks to the two that sent money to FARF in honor of Nicholas, I really appreciate it. Also, the gifts to Matthew P, that really touched me too! Our fan club is really what keeps us hoping for a cure......
And thanks to the blood and platelet donors, you are the real heros! Thanks for the continued support and the gifts of life. Nicholas did received another red cell transfusion on Fri, yes, that was just 17 days and platelets too at 8 days apart. We will be getting another cbc tomorrow so I'll post the results as soon as I get them.
Praying for miracles, expecting a healing.
Donna
Thursday, December 28, 2006 7:08 AM CST
Platelets are 6k and hgb is 7.5!
***********************************
Hello,
We are getting a cbc today! Shew! That's all I ever write about! Ha! We survive from cbc to cbc so I guess that is what is going on at the moment. Except for diarrhea and nausea this morning. Hopefully, he isn't getting that virus. I gave him Phenegren, the kind you put on the wrist, and he will probably sleep later than normal. He looked so pale this morning, I hate to see his hemoglobin level. He just got red cells 16 days ago so it should still be up some. He was so tired last night but was thrilled to beat Dad at Mickey Mouse bowling, a little video game that he can do really well! If he isn't winning, he will quarrel to himself! Roll those eyes and just fuss and fuss! He is so funny! I wished I'd gotten a photo of him winning though! He had the biggest smile on his face, laughing, and falling backwards in the chair!
He told me the other night that he would have Wanda all to himself the next day! Of course this tickled Wanda to pieces! She reads to him while he sits above her and plays with her hair! If she misses one little word, he will correct her! He is too funny! I told her he could read but she laughed and said that she thinks he just likes for her to mess up so he can correct her! Yes, she is mitten, hook, line, and sinker! She is spoiling him I do believe!
Spencer wanted to come to work with me today! Hopefully, he will not be too disappointed when he wakes up! He is so precious! Rotten but precious! They both are jealous! It is hilarious!
Please remember Devin, he has high temp and possible lung infection, Matthew, that his counts will come up and be gvhd free, John, gvhd free and all the empty arms.
Blessings and Bear Hugs,
Donna
Wednesday, December 27, 2006 12:05 AM CST
Hello,
We had a wonderfully blessed Christmas. The boys were totally spoiled, I mean blessed! No more spoiling, just saying blessed. Will post photos when I can remember to bring camera! We actually stayed home for Christmas and it was ok. Still ate too much and the boys enjoyed their gifts! I wasn't feeling the best and still am not, feel like I'm getting a sinus infection but have managed to keep it at bay so far. We were pleasantly surprised with a visit from Jeff's brother Darrell and his family. The children have grown so much! It was wonderful to visit with them and there just wasn't enough time to catch up on a year's worth! Darrell is still on oxygen and really needs your prayers. Heidi, I commend you! You have my vote for Mom of the Year! Super Mom! Hear all the clapping?
Nicholas seems to be ok, coughing up lots of junk and will just lie down in the floor, saying he is tired. I think he will need platelets again this week, will be 8 days Thursday. This is getting scary. I know he will continue to need the transfusions more frequently but when it begins, it hits hard. He has gone a year and 11 months, getting red cells every 30 days. I don't know what the norm is but he is now going about every 22 days or every 3 weeks instead of every 4 weeks. His coloring isn't the best and fluctuates between pale and dark. I just continue to watch for signs of what he needs when.
Spencer is doing great and growing straight up! He is such a sweetie. He is also rotten to the core! He is enjoying his time home from school but I'm sure will be looking forward to when it starts back. He went shopping with Sissy Bear today.
Pray for all the ones that need a healing touch. Soul or body. Pray for all the empty arms.
Blessings and Bear Hugs,
Donna
Thursday, December 21, 2006 7:33 AM CST
Our 2006 Christmas Update
Please click on the link and donate today! Thank you so much. Give until you feel so good that the Glory gushes out and its catching!
Hello,
Our hearts are saddened with the passing of Nina. She was such a sweetheart and so precious. Please remember this beautiful family in your prayers. She is the little one with glasses on in the Camp Sunshine film loop.
Also, Trossie's ekg was abnormal and is having a heart catherization this morning. Pray for them too.
Another request for Sissy Bear's husband, Joyel Wayne, he has a severe headache this morning. Pray for them.
Goodness, lots of requests this morning and I haven't even started yet!!!!!! Pray for all....God knows my heart.
Nicholas did get his platelet transfusion last night! We didn't get home until 11:30! They had one bag of platelets that someone wonderfully donated on the 15th that ran out at midnight so we got them late last night! Guess who was in the hospital? Santa! He came and visited Nicholas! Of course I had my camera and will post! Nicholas told Dad that a DIFFERENT Santa was there! Too funny! Nicholas also lost his tooth just before the transfusion began! Thank God it didn't bleed too much! He was his ususal demanding self and had a few hives during the transfusion. We got to snuggle when we got home and as always, he was his hugging, sweet little self.
I just spoke to him this morning and he doesn't sound too happy. He said he was upset but didn't have a bad dream, so I haven't a clue as to what is going on! I told him to look under his pillow so that may get him back in a good mood! He sounded very tight in his lungs as well. That's the other thing about being out so late is that he looses his moisture time. He needs his moisture and will panic if he gets any mucus plugs. He thinks he cannot breathe and I guess I'd panic if I couldn't breathe either!
Spencer is officially out of school and his Christmas party was yesterday! He enjoyed it so much and dressed up for his last day! He looked adorable! He went home with Papaw!
Please don't forget to donate to FARF in honor of Nicholas! Be a part of TEAM NICHOLAS and join in the fight for a cure!
Blessings and Bear Hugs,
Donna
Wednesday, December 20, 2006 11:28 AM CST
Hello,
Our 2006 Christmas Update
Please click on the link and donate today! Thank you so much. Give until you feel so good that the Glory gushes out and its catching!
Also, the cbc resulted in a platelet count of 10k, normal is 150 to 400k. When the platelets are low, he is in danger of hemorrhaging,ie nose or gum bleeds. Nicholas usually coughs up blood and/or has blood around his mic-key button. His HGB is down to 9k, when the hgb gets low, there isn't enough oxygen to get to all the organs and he has a hard time remembering the correct words for something, cannot think straight, attention span is less, tires easily, is short of breath, pale, has no energy, heart rate increases, and turns blueish gray around his mouth and forehead. If his ANC(ability to fight off infections) is below 500, he cannot go into crowds, and is basically in house isolation. No one can come to visit that is sick either. I don't take any chances and only go to hospitals for transfusions! Yes, a great place to be when your system cannot fight off infecions. We monitor continually for high temps too! Just to give you an idea of what is happening and what we have to watch for every second of every day!
So we will be going for platelets this evening! Did you go donate any? If not, call 423-224-5888 and schedule your gift today. What if.........there isn't any available? Do you know where that would put my heart? My mind? I do want to thank each of you that are donors where ever you live, there is someone that can use them. Thank you for your gifts.
Pray for Nina, John, Matt, Charisse, Sarah and Lori, Morgan's family, and all the empty arms. Pray for all the ones that need a healing touch. Pray for Trossie, my sister-in-law, she is in the hospital for high blood pressure. She is having some complicatios and was the one that had open heart surgery a while back. Pray hard!
Blessings and Bear Hugs,
Donna
Tuesday, December 19, 2006 10:44 AM CST
Hello,
Be sure to read our 2006 Christmas Letter Update above and donate generously in honor of Nicholas. Our heartfelt thanks!
I know you all think that all I do is beg but I guess I do. I beg for platelet donors, red cell donors, and donations to FARF. I will continue to beg for all the ones in need of a cure for FA or need transfusions. What amazes me is Nicholas isn't the only one that is getting transfused in our area. The only one for FA but FA isn't the only disease that needs blood products. Every time we go there are 3 or 4 other people getting transfused. Anyone on cancer treatments or just anemic has a need for transfusions. Our area is high in cancer patients! If it were one of your family members would you be donating? If time last long enough, it will happen in every family around here in some form or fashion. Please be generous in true gift giving.... become a donor today. God will bless you for it! I can't and feel so helpless when it comes to repaying everyone for your time and efforts. Just know that our hearts are full of gratitude and thankfulness for all that you all are doing. I'm doing my best to share Nicholas with you. His sweetness, his spirit, his will to live, his struggles, his triumphants, his life with FA. His smile will bless you and if you can meet him in person, I KNOW you will be blessed.
Thanks for all the emails I received about you donating and also to the ones that cannot, God Bless You ALL! Thanks to the Wampler families that donated to St. Judes in Nicholas' honor, that is so precious.
Nicholas is still doing pretty good. He is getting spoiled and loves every minute of it! They actually cooked him steak when we went for transfusions the last time! If I've already told you....sorry! Just read it again and bear with me! Santa came last Fri night and he was totally shocked that Santa brought him and Spencer a sword. He said, "I guess Santa really does know everything!" He also received his fire truck and Spencer a four wheeler! No, they aren't spoiled! Spencer kept asking for a mud car, in which we had no clue what he was talking about! He had to go and pick it out! Then, we pretended we didn't get it! He really got into that as he was just happy to get it!! He is so precious! It was hilarious! We totally confused Dad! Ha!
Also, we had a photographer to come to the house for a photo shoot! Not sure what we got but will post them when I get them! He turned to me and said that Spencer was a natural! Spencer would pose this way and that way without making a face even! It was precious! Nicholas ended up very tired and wanted out of his dress clothes and into his pjs! I did get some of those pjs with Santa! They were cute! I'll upload them some time!!
Pray for Nina, Matt, Charisse, Paul, Randy, and all the ones that have FA, or any other horrible disease. Remember the families of Delmar Adkins and Peggy Mullins. Its hard dealing with death any time but during the holidays seems to make it worse.
Be sure to read the Christmas letter and give until you feel good all over!
Blessings and Bear Hugs,
Donna
Thursday, December 14, 2006 7:26 AM CST
Hello!
Well the snow the other night ran off one of the nurses! She has to drive for 1.5 hrs to get to my house and she was petrified when it snowed the other night! She does drag racing for a hobby and is afraid to drive in the snow? Goodness! SO if you are a LPN and want a job taking care of an angel, call me and I'll tell you where to apply!
Now, Nicholas has had both platelet and red cell transfusions on Tuesday. He is bouncing off the walls! Singing every breath just about, talking ninety miles an hour, and playing, laughing, jumping, being totally silly to make Spencer laugh! Totally transformed! Wow, I wish you all could see the difference....before and after red cells! His hgb was 6.7 on Monday and I know it was lower on Tuesday. It is amazing to see him now. Its like a breath of fresh air, dead trees sprouting new leaves, butterflies, birds sining, spring time in the winter. Red cells give him NEW LIFE! I had no idea when I named his campaign, NEW LIFE FOR NICHOLAS, that it would be all about donating platelets and blood instead of a bone marrow transplant! He cannot have a bmt because of his lung condition. That makes us TOTALLY transfusion dependant and totally dependant on you donating platelets and blood. I know some of you are already donating on a monthly basis and we thank you from the depths of our hearts. Usually around the holidays, they have to call in their most reliable donors to donate extra because no one takes the time to donate. All the hustle and bustle of buying presents and wrapping them, and the most important gift would be your precious blood or platelets. No hustling and bustling, relaxing in a lounger, feet propped up, under a warm blanket, watching a movie, with a snack and soda afterwards! And you have donated LIFE! Restored an angels spirits, making his laughter return, eyes sparkle, voice lifting in song, restoring hope in Mom and Dad's hearts! Who wouldn't want to give that gift? That's all I want for Christmas! Yes, you can tell everyone I'm begging for Christmas gifts this year! I want donors for Christmas! That is absolutly the best gift you could possibly give. We are celebrating the birth of Jesus, the most precious gift ever given to mankind. And we give gifts in HIS honor. Give......until it makes you happy, until it makes you feel like kicking up your heels and singing!
Thanking you from the bottom of our hearts,
Donna, Jeff, Nicholas and Spencer
P.S. Please let me know if you donate blood or platelets! It does take off a lot of worry just knowing someone is donating...Have you ever needed something so badly and it all is depends on the actions of total strangers?
Monday, December 11, 2006 7:07 AM CST
cbc resulted in platelets being 21k and hgb is down to 6.7! Probably have to have both tomorrow!
*********
Hello,
Everyone is well except for me now! I was up sick most of the night! Hopefully, I'm on the mend now but do not feel well at all!
We are getting a cbc and more blood cultures today. I'll post the results asap but I'm sure we will be getting platelets and maybe red cells too. He was complaining with his head hurting last night. He wanted to know where his brain was. He is on the droopy side and very pale.
We really enjoyed feeding Stephanie and Brad yesterday. She is beginning to show! Her little tummy is so cute and we watched a the video of her little boy!!!!!! Yes! HE is due April 22nd! She ate really well! She is so tiny! She said she would just have to come over to eat! Spencer won't be the baby anymore! He said last night that he would kiss that baby! He is so sweet! Nicholas didn't have anything to say at all! He can't tolerate crying babies. He goes into orbit! He is ok as long as they do not cry!
Remember all the ones struggling right now, Nina, Matt, John, Charisse, and I'm sure there are thousands more. Pray for all the cancer victims too.
Thank you for donating platelets and blood, they are absolutely the best gifts you could possibly give.
Blessings, Miracles, and Bear Hugs,
Donna
Thursday, December 7, 2006 12:02 AM CST
Boo!
Nicholas is doing ok. He had a new nurse yesterday, Diane and really likes her too! Who wouldn't like her if she caters to you every need, especially food!??? Yes, he ate lots yesterday or chewed and spit out! He did drink lots of chicken noodle broth! He will have both nurses from now on I guess! Hopefully, for a long, long time! She plays a lot of different things with him and he likes that! I'm really thankful to get two good nurses! It amazes me actually. We are really blessed to have them and hopefully, they will be blessed being there and caring for my baby.
Spencer will be going to Mamaw and Papaws in the evenings and I'm sure he will enjoy that tremendously! He and Nicholas have really enjoyed all the extra attention! They love all the decorations too!
Pray for Matt, he is back in hospital with high temp. Christmas happens whether the cookies are baked or not! When you have a sick child, nothing else matters and lessens in priority! If family is well, everything else falls into place! We tend to look at things with a totally new prespective! God has ways of making us stop, slow down, and enjoy life!
Pray for Delmar, Jeff prays for him every night anyway but he is in the hospital now. Rem Randy, as he travels to Duke to see if he is eligible for a stem cell transplant, I think or some type of treatment. Rem Paul, he is getting worse. Rem all the children, and adults that have lost loved ones. Rem Devin, he now has GVHD! Oh I hate FA! and all cancers! LIfe snatchers!
If you don't have anything to do, please pray. Please donate blood and platelets. Please get a life and give LIFE!
From the depths of my heart,
Donna
Tuesday, December 5, 2006 7:11 AM CST
Hello,
Nicholas and Wanda had a great day yesterday! They even got some of his homework finished! He did well in school yesterday too!
I'm still in the Christmas decorating process! Hopefully, I'll finish it soon! I would love to get it all in order and then I can concentrate on shopping! The boys have had a great time playing with their nativity scene. I have a red and blue bird that chirps and sings. Spencer had it singing to baby Jesus and it was so cute! They love all the moving/singing/chirping/barking/ decorations! I have actually found a couple of Christmas frogs for their bathroon! They sing too!
At bedtime, Nicholas said his head was hurting! He said it hurts all the time! Now, that struck fear clear to the bone! I'm worried it could be the fluid causing pressure on his brain because of a malfunctioning shunt, which hasn't worked since he was 2.5 yrs old! Plus all the other possibilities that it could be! He told Fran that his head hurt and once during the last red cells transfusion he complained of his head hurting, so he told me this time! He ususally doesn't want Mom to know! I'm also worried about a brain hemorrhage. Yes, we have to continually monitor him, his actions, his symptoms, his everything! Yes, its always something and very mind boggling!
Please remember Nina, she is now on hospice. Remember all the children and adults that are struggling with all the treatments! Pray for Charisse's father who is very ill with a virus that is attacking his liver. He is contagious at the moment, so please pray for them.
Miracles, Blessings, Precious hugs and kisses, gett'em while you can.
M't:6:33: But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you.
M't:7:7: Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you:
Pray until something happens,
Donna
Monday, December 4, 2006 7:55 AM CST
Hello!
Yes I'm back in the saddle and hanging on tight! This ride has been a rough one that is for sure! I sorta feel like I'm the horse though! Ha!
Before I forget it! I found a note to Santa......
Dear Santa, I want a sword! Nicholas Boggs
Santa has his work cut out for him this year!
Overall, Nicholas seems a little droopy. He did test positive for something in his blood and Dr Harris reassured me it wasn't from petting the puppy! He is just about finished with his antibiotics......
We did go for a platelet transfusion yesterday! His platelets were down to 25k on Fri but by Saturday his mickey button dressing had lots of blood on it! Transfusion went ok but we were there all evening! I didn't get anything accomplished on the home front!
Our new nurse started today by herself! Her name is Wanda. She and Diane will be taking care of him for me. Hopefully this transition will go smoothly. It sure is different for me and I couldn't hardly leave this morning! They will get Spencer off the bus for me too! Spencer met her this morning and he seemed very relaxed and was just the cutest thing! He is so sweet! He has been a good little fellow and we spent the day Saturday together! He went to a birthday party and a Christmas party! We had fun!
We went to a Christmas Parade on Fri evening and Nicholas stayed in the van of course! This couple noticed Nicholas and realized what was going on and the man kept bringing him candy and a balloon! Nicholas was thrilled and gave him a big bear hug! His name was John. Jeff didn't know what was going on but overheard him say something about getting another bear hug and he knew he was talking about Nicholas! I'm sure John thought Nicholas never got any candy! Nicholas would whoop and holler and give him just the biggest hug! It was so sweet and precious!
Please remember all the ones suffering with cancer. Remember Nina, she is now on hospice. Remember Randy, I haven't heard an update on him in a while but I'm sure they could use the prayer. Pray for Paul Czar, he has cancer too. Goodness there are so many that need prayer, Jacy, Matt, and don''t forget my baby!
Miracles, Life, We all want our babies to stay with us but the ultimate healing is in the arms of Jesus! No more pain, no more bloodwork, no more transfusions, no more needles, but best of all, no more fear. Perfect little angels.....I have asked to see the angels encamped around my baby, maybe with the faith of a child, we'll get to.
Time, Time to laugh, time to cry, time to tell our loved ones we love them.
As Nicholas told Mary, "I love you with my whole heart!"
Donna
Tuesday, November 28, 2006 8:13 AM CST
HELLO!!!!!!
We haven't fallen off the face of the earth yet! The good Lord hasn't come back yet either so I guess we will still be here a while longer! We've been on a huge rollercoaster ride! From no sitter to major sickness that has swept through everyone except me so far, you name it, it has happened! Want to come along for the antibiotic ride? Spencer has been on them and now Nicholas' blood culture is now positive and he started them on Sunday! But guess what? He is on the wrong one and they will have to put him on a different one! So here we go again! You know I think we've had two platelet transfusions since I've been on here.......one on the 16th and another on the 24th! Well, at least another one!
We had a wonderful Thanksgiving...well, everyone except for Jeff. He had that stomach virus that is going around and was the sickest I've ever seen him! I felt so sorry for him! He is somewhat back to normal! Whatever normal is!!!!
I've really spent lots of loving, kissing, hugging time with my babies! It is wonderful! Nicholas wakes up and immediately holds those precious little arms up for hugs! Yesterday morning, he pointed to his heart and said, "Tom Tom, I love you so much in here and will not let anything take it away!" Choking and barely getting it out, I told him the same thing! He said, "Oh Momma, you are so sweet!"
Love you in here(heart),
Donna
Friday, November 17, 2006 12:47 AM CST
Hello,
We did go for transfusions yesterday! Yes ALL day long......he received platelets and red cells...
He didn't break out into hives at all but did complain with a headache during the red cells. This is really worrying me and I cringe every time I think about it. Needless to say, I'm still in recovery mode today. The toil on me physically and mentally is getting worse each time. I can feel my energy is draining and need a day or two to recoup myself! The joy I see when Nicholas feels better really helps! He was playing with his feet during this one and it was so funny! I should have gotten a photo! He had his fingers clasped between his toes and was bouncing his little feet! It was so cute!
My heartfelt thanks to Mary for taking care of Spencer and taking him shopping for me! It really relieves my mind when I know he is taken care of so well. Thanks Mary for everything!!
Pray for all of us and all the ones getting treatments, transfusions, or on clinical trials. They all need lots of love, prayers, and encouragement.
Miracles, Grace, and Peace,
Donna
Wednesday, November 15, 2006 7:23 AM CST
Hello,
Nicholas had a pretty good day yesterday! He was feeling good for the most part. He is very pale and I'm sure will have to have platelets and red cells this time. He was breathing sort of fast last night so we are getting a cbc today instead of tomorrow. He had a really bad gas spell yesterday morning but his diarrhea has stopped for the most part! He did really well on his tests on Monday evening. He seemed very distracted and I could tell he had to really concentrate on the answers. He is remarkable to be able to do so well when he isn't feeling his best! He is a super hero! I know he doesn't get the exposure to all the interaction with his classmates and that really kills me but he is doing really well. He gets really tired and lays his head down on the desk sometimes. I can tell a difference when he is needing red cells! On the other hand, he will be so hyper after his red cell transfusion! He will be feeling so good and just bounces back and literally bounces in his desk!
This past weekend, Nicholas decided he could suction himself! He is doing pretty good I must say! He doesn't have the strength to suction out the thermovent really well but overall he does great! He is growing up!
Spencer is too! He is such a big boy! He is so sweet and loves to tell big tales! It is time for Teacher Parent Conferences so I'm wondering what will develop out of this one. I think he needs to be in the Accelerated Reading program. He actually had a couple of meltdowns on me on Sunday and said, "All we ever do is sit on that rug!" I think he definitely needs a little more stimulation.
Pray for Randy's family as they are dealing with this cancer diagnoses. Pray for all the children in transplant. Pray for the empty arms. Pray for the worried minds, heavy hearts, and the ones having panic attacks. Pray for miracles. Pray for salvation.
Praying that you feel the comfort of the ever present arms of a loving Saviour wrapped around you, giving you peace and restoring your joy.
Donna
Monday, November 13, 2006 9:02 AM CST
Hello,
Spencer had a wonderful birthday party! Not many children showed up but enough to have a good one! They were all so sweet and excited! I found a huge Superman coloring book and tore out each one a sheet and they all had Crayons to color with! They really enjoyed that! I didn't know how that was going to go over but they all loved it! Some he said were coming didn't show up but it was a very rainy, nasty day! It was fun and he really enjoyed all the attention! We did take Nicholas and guess who else happened to show up! His teacher Ms Long was there with her family! Of course, Nicholas has to take their picture! I'm not sure if her husband was in the photo or not because she has a little blond headed daughter! It looked to me like he was leaning toward the blondes!!!!!
Nicholas is definitely on the mend! He was rotten yesterday! Bossing me around and barking orders to everyone! He did have to study his school work though! He kept pouting and I reminded him that he didn't study on Thursday or Friday because he pulled one over on Frances! Yes! He did do that! But overall, I could tell he was feeling much better! He is a total stinker! One other thing I checked was his teeth and guess what! He is cutting a molar! That could have also contributed to his nausea! He does this every time he cuts a tooth! I just happened to think about that and checked! He is also getting some loose ones in the front!
I haven't heard from Randy but feel pretty sure they will be getting his treatments scheduled. Pray for Matt, and all the ones just transplanted! Some are doing wonderful and others aren't. Pray for strength and courage for all.
Miracles.
Thanking God for each day,
Donna
Friday, November 10, 2006 7:03 AM CST
Hello,
Nicholas is on the 1st Honor Roll list again! Spencer had only a couple of Needs Improvements and about 160 checks on his report! He did supurb! Yes, we are proud of our little guys!
Nicholas didn't rest well last night. He has a full blown cold! He wasn't as nauseated last night so hopefully he is on the mend for the tummy issues. Spencer took a coughing spell around 4 am that lasted for an hour. After meds, he finally settled back down and went back to sleep! I was a yo-yo most of the night. You know the rest of the story!!
Tomorrow my little guy turns 6! I cannot believe Spencer is already 6 years old. Time sure does fly! I told him last night that he makes my heart smile! He does! Our special day is Saturday. I love Saturdays! We get to snuggle for a while and then he ususally wants to play for a while. And we have our little breakfast together most of the time without a "Nicholas" interruption. Then, when Nicholas does wake up, Spencer will continue to hang around my neck while I'm working with Nicholas! This is our routine on Saturdays and if we have to miss one, the weeks seems so long. We definitely need our special "our" time together! I wouldn't have missed the opportunity to be their mom for anything in the world. I LOVE being their mom! They make my heart smile and sing!
Every morning I tell Spencer to have fun at school but no flirting! Dad said yesterday that he doesn't know how to flirt! Spencer's eyes lit up and he exclaimed, "OH yes I do!" We all had a big laugh out of that one!
Tomorrow is his party at Pizza Hut, 2:00 pm! Come on and join in the fun!
Mamaw and Papaw brought their little puppy up last night! It is a chihuahua named Dinky that someone gave Mamamaw! She doesn't even like dogs! That was so funny! Anyway, its a puppy and Nicholas giggled and giggled at her! She loved Spencer and followed him around everywhere! He loved that too! Nicholas finally petted her but he was petrified that she would chew on his milk line! We had to unhook him for a while. I'll post some photos!
Continue to pray for Matt as he did get to go home! The video was awesome and tissues were a must! His platelets were down to 5k and had to be transfused yesterday. Pray for them. Pray for the Sacks family as they just lost their daughter Dani. Pray for all the ones struggling with FA and cancer diagnoses! The list is long and getting longer..remember Randy.
One day at a time and praying for miracles,
Donna
Thursday, November 9, 2006 7:21 AM CST
Hello,
We did get to the hospital around 7:45 last night! The platelets were ordered around 3:30 but arrived late. I was going to wait until today but they expired last night at midnight! Nicholas had a major gas spell about the time they started in and I was worried it was a reaction. He threw up and then he did break out into a few hives. I had to give him more Benedryl. He was not a happy camper. His little nose was already running and he didn't feel the best! Add Benedryl to the picture and you have one little grumpy bear! Mom didn't scratch fast enough or long enough. Mom didn't get the urinal fast enough. Mom didn't know the exact spot that was itching! Mom......is very tired today!
Mom is also broken hearted with the news of Dani's passing. She has endured a long haul of medical issues and fought with grace. She lived 22 years post BMT! What an inspiration to the FA world! Dani was the first person with FA that we met after Nicholas' dx! She gave me hope.
Remember Randy, as they get the results from the tests.
One Day at a time, sweet Jesus,
that's all I'm asking of you.
Teach me today, to do all the things
that I have to do.
Yesterdays gone, Sweet Jesus,
and tomorrow may never be mine.
Lord, for my sake,
teach me to take,
One day At A time.
Miracles,
Donna
Wednesday, November 8, 2006 6:47 AM CST
*******************
Platelets are 10K, HGB-8.9, ANC-660
*******************
Hello,
Nicholas had a rough day yesterday. He is somewhat congested and actually coughed through out the night. He is still really nauseated and actually vomited this morning! It will take probably another week for him to get straightened back out! This is our normal every time he gets sick! One little thing will upset the apple cart and it takes forever to get all the apples in order again! Bless his little heart! I think part of the problem was because Spencer was home and cramping his style! He wanted to know WHY Spencer didn't have school! He also didn't want to study last night! He finally had an attitude change and really got into his spelling words. He is having a test today on matter if we do not go for a transfusion. I'm thinking a transfusion is likely. He was so pale yesterday evening. And where he is so nauseated, he strains and it burst the blood vessels in his face. They are really light right now so hopefully they aren't down too much.
Spencer seems a little better as well. He was so sweet this morning! He really enjoyed being home yesterday and hugged and hugged on Frances yesterday! I think he enjoyed her attention! He is a stinker! He sang Happy Birthday to me last night and instead of saying Mom, he said HB Donna Boggs and just laughed! He is rotten! He and Nicholas met me at the door with birthday hugs and kisses! The sweetest gifts on earth! 3 more days until Spencer's birthday! If you get a minute, please send him a birthday card to 11824 Lyons Fork Road, Coeburn, VA 24230! He will have to get one out in the mail to his little girlfriend in Georgia! Elisabeth turns 5 on the 12th and her daddy Charlie's is the 11th, same as Spencer's!
I will post Nicholas cbc at some point today whenever I get the results. Pray that his marrow cells will grow and grow and totally recover. Yes, I'm selfish and want my baby to live. Also, pray for Matthew as he gets home! HOORAY! 135 days ago he had his transplant! Goodness, they have had a long journey that isn't over as Matthew is requiring platelets every other day. Pray for Randay Stanley and family as they are dealing with cancer, tests, and treatments.
MIRACLES, Lord, we need miracles,
Donna
Tuesday, November 7, 2006 7:50 AM CST
Hello,
I know you all are tired of hearing about every little sniffle but Spencer came in from school and his nose was pouring and red as can be! So you get to hear about BIG sniffles! LOL! He has developed a terrible cold and been fighting it for a long time. It showed itself yesterday and I felt so sorry for him! Hopefully, he will get some much needed rest since he is out of school today and feel better for the rest of the week!
Nicholas is a little congested too. We will be getting a cbc tomorrow and see where his counts are. It will be 8 days since he was transfused with platelets. He is still really nauseated and if petechia develops on his face, we may have to do cbc today. He was really dry in his secretions and he thinks his trach is coming out. He panics and actually cried during school last night. He gets so upset! He has been hitting his trach, trying to push it back in even though it isn't out. This is very scary for me! If his counts are down and he continues to do this, I'm afraid it will rupture a blood vessel. Goodness, if only he would listen and understand. Sometimes I can reassure him and he is ok for a second or two, then he will start coughing and start the same process over again. He keeps wanting me to tighten the collar that holds the trach in place and I actually think it is too tight to begin with. I have to pretend to tighten it to calm him down. It is making a place on his neck and it is very hard to heal once he gets the skin broken in this area. He did ok on his school work but I think he could have done better! He was upset over his trach and I think he couldn't concentrate on Rome! He only missed 2, I think, so he is doing absolutely wonderful and far above everyone's expectations! Ms Trish told him it was a B and he looked devastated! He is so precious!
Pray for the family of Ruby Mullins, her funeral is today. Pray for Randy Stanley as they battle his cancer. Pray for Matt as he cannot hold on to his platelets and they are doing an antibody study on him. I could go on and on with prayer requests....so many are in the final stages of cancer, pray for them. Pray for little John as he battles GVHD and been in the hospital for a month! My constant prayer is for strength and grace for the journey. As someone told me the other day that they hoped Nicholas gets better, I had to say, "Unless we get a miracle, he won't get better." Then I go into the bone marrow failure part....., if his marrow does not develop red and white cells, and platelets then nothing is going to work correctly. Dominio effect! One system will shut down after the other! This is reality. If I bury my head in the sand, it won't help matters. I have to smile, gather as much strength as I can to live! I have to capture every second, every smile, every little pesty jesture, every little sparkle in his eyes, every hug, every precious kiss, every everything! Then, I have to do the same with Spencer for I do not know how long we have with each other. No one does, so be careful and love your babies, steal as many kisses as possible. Make memories!..
and pray for the mind to remember them with.
Miracles,
Donna
Monday, November 6, 2006 7:00 AM CST
Hello,
Well, I guess Nicholas caught a virus at the hospital. His stool was negative for C-diff thank God! He just about dehydrated on us Saturday and was really droopy. We had him to sip water all day long and kept him on his feeds most of the day! He wanted off! He keeps asking all the time to get off, which means to get unhooked from his continuous feeder. He asked once and he wasn't hooked up! It was funny! He just smiled! Oh, he has been so sick. He has been having those big bad gas spells and throwing up! It has been heartbreaking!
I also changed his trach this weekend and he has been worried about it since Wed! He was telling Ms Trish all about it! He told her that Dad would hold his nand and Bubbie would pray while Mom changed it! I told Nicholas he could pray too. He said, "I can't pray without my trach!" Nicholas said that he hoped it went really quick! Out and in! Well, Spencer really helped! He was acting out the motions as he was speaking really slow, he said, "It could go slow like this....oooooouuuuuttttttt aaaannnnddddddd iiiinnnnnn!" Nicholas was furious! I had to make Spencer stop! He is rotten!
Anyway, the trach change went really quickly and he was satisfied! He was so relieved!
On Sunday, I could tell he was feeling a little better. His diarrhea had diminished and he just looked better and felt perkier! He and Spencer found the Mathathon cd and that is what they played all day!
Pray for Ruby Mullins family, she passed away on Saturday evening! She was praising God for two hours before she died. What a testimony!
Miracles, blessings, and Bear Hugs,
Donna
Friday, November 3, 2006 7:45 AM CST
Ok, I had to take Nicholas in to dr to let them "look" at him! Totally useless! I did get an order for a stool sample and it is now in the lab thanks to Sissy Bear! I'm totally stressed. But I'm fine! I'm just crazy! But that helps too! Ha! Gotta love, laugh, and be silly some times! Nicholas loves to laugh as you can tell! He was on Dial Mamaw's Bear Tales and I could hear him laughing! He told her, "That was a good one Mamaw!" Yes, everyone caters to him and keeps him smiling!
I did get Spencer's invitations finished for his Superman Birthday on the 11th! He loves pizza so guess where we are going! Yes, Pizza Hut! He wanted to invite his whole class and we did! It will be his biggest one yet! He deserves it! He is a real superhero! I call him Super Spencer anyway! He is such a trooper! He has so much to deal with anyway and needs some special attention! It will be his day!
I didn't know that we needed to learn so much! Life is one big lesson! Evidently, we all needed to slow down and enjoy each moment. We go through life too fast and do not take the time for each other! Memories with the children will be the most precious times of your life. Make lots of memories! They are the only thing you can hold dear to your heart and bring smiles to your soul. Take time to huggem and lovem! They are precious little jewels.
Remember Randy as they are getting treatments set up. I know its one foot in front of the other. I look back on when Mom had her lung took out and its one big blur. You just function! Rem Matt as he prepares for home, Sam and Devin are doing great! Apryl is too!
Miracles of life, cherish each one!
Donna
Thursday, November 2, 2006 8:34 AM CST
The Photo on top was one of the wax teeth that Carolyn gave him! He put them in and she turned around and saw him and she screamed!!!! It was hilarious! Nicholas loved it!
Hello,
Well, it seems that Spencer is getting hoarse or laryngitis. His throat has blisters on the back of it! He isn't having any fevers though. I gave him meds last night and he said his throat wasn't sore this morning. I gave him more this morning and he seemed fine. Off to school he went!
Nicholas now has a diarrhea! It's not a normal flu side effect but who knows! He says his knee, leg, and now his ankle is hurting him! His normal complaint and now his ankle too. He is such a trooper though! He didn't sleep well last night! He was tossing and turning a lot and coughing! My gut feeling is he is getting sick again.....
He did well on his school work again! No, I'm not bragging, just telling you that with all that he has to face, he works really hard at his school work! He is learning at a much faster rate because he only gets 5 hrs per week with his teacher! and that includes the testing! He doesn't get 2 weeks to learn about Ancient Rome! He is doing exceptionally well! He is one sharp cookie! We all knew that though!
Nicholas has a huge bruise on his upper thigh! I told him it hurt me too look at it! He smiled and said, "Don't look at it then!" Mr. Smarty Britches! He is still feeling pretty good huh?
Remember all the ones in transplant, it is a constant vigil! No rest whatsoever! Constant monitering. Constant worry, constant concerns. Constant love too! If your child is healthy, Thank God! If your parents are still alive, Thank God! If you don't have cancer in your family, Thank God. But pray for everyone that does. We now have another neighbor with cancer. Please remember Ruby and her family.
Thankfull for every moment as a family,
Donna
Wednesday, November 1, 2006 8:42 AM CST
Hello,
Nicholas' cbc came back with platlets down to 14k. He didn't even cry when they gave him his flu shot. But Spencer on the other hand howled himself to sleep! I came home and he was sound asleep! Frances had to hold him while the nurse gave his shot! I'm just glad to be the hero and not the villian for once! The only kicker now is that he seems to be getting a cold as I am!
Spencer told me Sunday he loved me All the way to Heaven! "Wow! That's a lot!," was my response! Then he said, "And I love Daddy an inch more!" I couldn't help but laugh as my balloon went swoooosh!! Dad really liked that one! Spencer said, "I'll love you that much tomorrow!" Wow! Ok, my balloon was re-inflated!
My little Batman and Superman really enjoyed all that chocolate they gathered last night! Come on over for a chocolate party Ms Mary, anytime! They got too much as usual! Lots of cool stuff! Thanks for the goodies, Ms Mary, and Carolyn. Nicholas did get really tired last night after it was all over with! He said, "My arms are too tired!" as he flopped against me!
Batman received his platelet transfusion yesterday and Ms Pam got him and Spencer several gifts too! Thanks! I guess they were trying to make up for his long wait! I'm not going there right now as I'm still recouping!
Pray for all the cancer patients, Randy is going today for his treatment plan, please remember them as I'm sure they are still dealing with the news and have to go blindly into treatments. Its called Function Junction at this point. You just function, getting what you need when you need it....you DO as you have too and the rest of the world goes by....in a blur! All too familiar! For us is has been sort of reversed...Nicholas has progressively gotten worse and we are in Function Junction or progressed to Survival Mode now. All in major need of prayer, lifting of spirits, a helping hand, and mostly friends and family to stand by them.
Trusting in the Saviour of the world, there is none other to trust. Believing in miracles,
Donna
Monday, October 30, 2006 2:05 PM CST
Hello,
Nicholas is getting a cbc this evening. If all is well, then Nicholas and Spencer will be getting their flu shots as well. I'm not looking forward to this at all. I know we will have a huge fight on our hands especially with Spencer. Please pray that all goes well. Nicholas has been very, very tired today. I'm worried that his counts are low and here he will be getting an injection. I know he will be getting transfused tomorrow. He has bruises all over his little legs...new ones! That is a double-edged sword! It is an indicator that his platelet count is low and that he has been feeling great and bouncing around a little too much!
Bless his little heart! He did not want to study Ancient Rome this weekend at all! I really tried to make it interesting but....who knows....he did this with Ancient Greece and aced the test though! We'll see! Play acting out the info really gets his attention as well as the encyclopedia on the computer! We did watch a video on the Collesum and the Alps!
Praying for Randy Stanley as he goes back to dr for his treatment plan this week. Also, Charisse (protection) and Issac with the chicken pox and for Alan who has never had them....! Pray for Matt, as he is struggling right now. Also, Joanne that she will get stabilized. Pray for all the empty arms....
Blessings and MIracles,
Donna
Friday, October 27, 2006 7:41 AM CDT
Hello,
I know you all get tired of the same old stuff but my baby is feeling the best he has felt in a long time! He keeps asking for food to eat...wanted his cherry pie and I made a pumpkin chess bar and he just had to have some of that! He and Spencer had a box and played with it all evening! They had all Dad's tools out and had poked holes with screwdrivers in it! Torn all the flaps off and taped them back on in other places for doors, etc! They had a ball with it! I could hear them laughing, giggling, and talking! It was so precious! Nicholas was lying down with his head in the box, just like his Dad when he is working on something! I couldn't help but laugh! Then they found some foam sheets and had broken them up and the little foam balls were all over the floor! Yes, they had to clean it all up but saved it to play with this evening! A room full of toys and they like the boxes best!
Nicholas will tell himself stories all the time! When he goes to bed at night, he will lay there and tell himself a story. I watch his little hand shadows on the ceiling while he acts them out! I'm sure most are Super Nicholas rescuing Alessandra! He can definitely entertain himself.
Spencer was just a little paler than usual yesterday. Yes, I mean paler than his normal fair complexion! He looked weak in his eyes but seemed ok, just a little tired. I hugged him and he said I hurt his ear. I'm wondering if he is getting an ear infection or something! Hopefully, he can sleep in tomorrow morning! No, he will probably be up at 6:30! Ha!
Prayer requests came through for Randy Stanley. He was dx with Multiple Myeloma on Tuesday. Pray for him and his family as they deal with chemo and the beast called cancer.
Remember all the FA patients, Matt dealing with low counts still, John with GVHD, Nina with cancer, all of us dealing with low counts and no remedies. What a miracle if Nicholas'and all the others counts would start going up and up and up, until they reach a safe range.....no, we will never be off guard. There is just too much to "watch" for! If it isn't low counts, its cancer. Its FA and any thing can go wrong with FA. It can effect every system in the body. Always something! I know God's grace is sufficient and we will survive. I was praying yesterday and told Jesus, "Its me again! I know you have to be tired of hearing from me....." This morning, I see an image of HIS loving arms around me and me hugging Him, snuggling up and in total peace and resting. Ah, that would be Heaven wouldn't it!
As long as there is breath, there is hope,
Donna
1Pe:5:7: Casting all your care upon him; for he careth for you.
Thursday, October 26, 2006 7:11 AM CDT
Hello,
Nicholas did well in school yesterday! Missed one in spelling and 100s on the story tests! He is surprising everyone! He is so rotten! I had to change his c-line dressing and he didn't want to because of the moisture running. He was so mad and cried his little heart out. Well he settled down when I finished and Dad had him laughing with some huge star sun glasses that Spencer wore to school today! I'll post a photo when I can...
Then, around 1 am I heard Nicholas crying and checked on him. He thought his dressing had come loose and he was crying so pitiful! I checked it and reassured him that it was ok. After lots of hugs and kisses, he finally settled down and went to sleep. He worries so much about his dressings, trach, and g-j tube. He will ask if its time to change his trach. I asked him the other day if it was time and he immediately said, "NO! You have to change it in November!"
Nicholas was in the pestiest little mood before the dressing change! He was mischevious...as in holding on to the suction tubing so I couldn't clean it out, holding on to my arm and not letting me move. With sparkling eyes and rosy red cheeks, he was rotten! I began pestering back and the giggles were music to my ears! He was hugging me and I began to kiss his cheek and tickle him really good, we've always had to be cautious because of the trach! He is very ticklish! He loved it and kept wanting me to do it again! Spencer didn't want me to do him! He hates to be tickled! Oh, those red cells really perk my baby up! His teacher said she could tell he could concentrate better and answer more quickly. He was just a little too perky to sit still for school!
Dr. Spencer, with his mask on while I changed Nicholas dressing, had to get his bears out and put some of them in the waiting room and while he was examining a couple of others! He will get out syringes and little bottles and pretend to give them flu shots! That reminds me, we all have to get flu shots! He will NOT like that at all!
Pray for Charisse, as Issac has the chicken pox.
Blessings and Bear Hugs,
Donna
Wednesday, October 25, 2006 7:24 AM CDT
Hello,
Nicholas was rosy red cheeked yesterday evening! He really enjoyed a visit from Mamaw and Papaw. He was so attentative to Mamaw, helping her try on her new diabetes socks I found for her and trying to tie her shoes! Then, he ran to his room and got out the vitamen E oil and rubbed some on her spots and scratches! He takes good care of his Mamaw! It was so sweet and precious! Spencer jumped on Papaw as soon as he came through the door! Wrestling and boxing! Papaw got the worst of it! He should have wooled Spencer good!
Nicholas had school yesterday and did really well. He knew his stuff but didn't have any tests. He has been really dry and squeaky with thick secretions but seemed ok last night. I slept last night! I was exhausted! I don't think I woke up but once.
Good news on the FA tranplantees, Matt is at RMH and so is Super Sam! Wow! Good Job Jesus! Remember all the rest of the FA families.
Blessings, Miracles, and Bear Hugs,
Donna
Tuesday, October 24, 2006 7:33 AM CDT
Hello,
We did get transfusions, both platelets and red cells. Our last platelest tx was 8 days ago and red cells were 23 days ago. Hopefully, he will recoup some now that he isn't fighting pneumonia. He was real droopy on the way to the hospital and Spencer reached over and patted his arm and told him we were just about there! He is just the sweetest thing!
Dad came after Spencer and took him home to get ready for school. Nicholas perked up during the red cells and at midnight, we were giggling little pumpkins! We were telling ghost stories and playing "Read My Mind"...I chose red cells and he asked for hints. I told him it was red and perked him up.....he thought for a minute and said, "Cherry Pie!" Love his little heart, he thinks of food constantly and begs for it all the time! He will ask about what he can eat the next day. Yes, he gets whatever he asks for! Last night it was pimento cheese sandwich, peanut butter and graham crackers, orange sherbet, and a hamburger!! He nibbles at it and then asked what else was on that cart! The nurse brings a cart around with snacks and they give him everything! I told him that was all...she had already given him everything! The hamburger wasn't on the cart, we had gotten that when we picked up Spencer's dinner of chicken nuggets!
I'm very tired today and hope I can stay awake! Coffee!!!!!! I need some chocolate too I guess! Ha! We got home at 1 am this morning! Nicholas sounded really squeaky this morning and I gave him a breathing treatment before I left home. He missed about 4 hrs of moisture last night! Everything is so fine tuned, one little upset throws him out of whack! His lips were turning more pink last night and hopefully, he will have rosy red cheeks this evening. Not from fever but from the red cells.
Matthew may just be home in two weeks! Thank the Lord for his continual mercy and grace. God is so good! He deserves all our praise.....Who else could we possibly give honor and glory too? Only God has the power to heal, restore, grow new cells, and give life to a lifeless body. Give life to a sinner, Give Heaven to a hopeless soul, and give hope where there is none...and they all are miracles.
Blessings and Miracles,
Donna
Monday, October 23, 2006 7:55 AM CDT
Platelets are 11k, hgb is 7.3, ANC is 504.........
***********
Hello,
We are getting a cbc today and it has been 8 days since his last platelet tx. I'm sure he will need platelets and possibly red cells too. If so, we will be there all night! and it isn't suppose to warm up much today! I wish we could wait until it warms up but most likely cannot wait. It's scary enough just knowing they are dropping and Spencer just cannot be a boy. Sissy Bear said something about that the other evening, that Spencer doesn't get to be a boy! A rough and tough one! That has the freedom to run, jump, and wrestle with his brother! It is true! But on the other hand, like the other morning, I was working with Nicholas and Spencer was just rubbing his head and patting him. Nicholas didn't appreciate it though! It was so precious. Then, after Nicholas calmed down, they ended up laughing and bumping heads! I'm on edge all the time....can you tell????
Well, our class reunion went really well and it was fun! The highlight was no one recognized Troy Jonus! It was so funny! I switched name tags with him and that was even funnier! I think it is amazing that eveyone else has grown older but I haven't! Hmmmmmmm, now how on earth did that happen? HA! Only in my dreams!
Please go and donate blood and platelets. I can see Nicholas weakening and I know the next step means he will begin needing tranfusions more often. Yes, my heart is breaking.
Guess what I found on ebay? A white tux! Yes, I won it for his wedding!! Alessandra look out! He is going to be a pure little doll in it! He is so excited he cannot stand it! I get so tickled at him! Now, I need white cowboys boots and white hat! He will be THE DUDE that is for sure! Anything to make him smile......
Praying for Matt, Sam, Devin, Ryan, John, they are all in transplant, or having complications from transplant! Others are dealing with the effects are, Dianna, Haylee, Charisse, Ty, Nicholas, Will, Amelia, Marshall, and lots more! This is just for FA! Now, the list gets humongus as we go to the cancers....Pray for strength, grace, and wisdom for each family as they deal with different issues and empty arms.
Blessings, Miracles, and Bear Hugs,
Donna
Friday, October 20, 2006 7:17 AM CDT
Hello,
Nicholas smiled his fake little smile for the school pictures yesterday! I even mentioned Alessandra! but I think the photographer missed the real smile! He wanted to wear his western shirt and boots with spurs which his teacher Ms Long loved! He did get to work with his class for a few minutes! They all clapped for him and he was all smiles! There was a new boy in class and he asked why Nicholas hands were like that. Nicholas explained it all! Then I saw one whispering and said, "He doesn't have thumbs!" That is when I pointed that out to the class and the new boy said, "THAT'S SCARY!" Ms Long pointed out that it would be scary for all of them but for Nicholas it was natural! Nicholas tried to write on the Smart Board but it wasn't working well to show them how he holds a pencil. I told them that Nicholas did whatever he wanted to without thumbs! But I didn't tell them that he cannot pull up his pants or get them down! A guys gotta have a little privacy!
Overall, Nicholas is doing ok right now. I think he will need red cells shortly because he is having some difficulty thinking of the word he wants to use! He does that when his hgb gets low... Hmmmm, maybe I need a rbc transfusion too and I could think better! AND give me more energy! Nicholas is still complaining with his leg hurting, just below the knee on his shin. He normally never complains so I know he is hurting pretty bad or he would never mention it! We are trying to hold off until Monday for a cbc, he will definitely need platelets by Tues most likely! That would be 8 days... I'm getting a headache just thinking about it! His coloring is indicating that the platelets are falling rapidly! He received 0- last time and they don't last as long for some reason! Thank you for donating platelets and red blood cells. They really boost him and stopped his coughing up blood. Words cannot express our heart felt thanks for donating! Call 276-244-5888 to schedule your appointment if you want to become a MUCH NEEDED DONOR!!!
We also had lunch with Spencer! He was totally suprised! He did get his sticker taken away for talking too much yesterday! I think he was embarrassed that I found out! There were several little girls hollering, "Hi Spencer!" Oh no! He wants to invite all his class to his birthday party and wants to have it at Pizza Hut! Superman is the theme! Mom is going to have to turn into Super MOM!
AND we are having our 25th Class Reunion this weekend! It will be great to see everyone again. Those girls are sure hard to find, especially with new names! Goodness, I cannot believe its been 25 years! Time flies when you are having fun I guess!
Matthew is on the mend, Devin is now having tummy pain and on an insulin drip, Super Sam is going to be released soon from the hospital! Remember them all and also Ryan, Charisse, Jo, Jacy, Will, Diana, Amelia, Wesley, just to name a few....
Wednesday, October 18, 2006 7:38 AM CDT
Hello,
Nicholas is rotten! To the core and back again! He was feeling great yesterday! He and Spencer played and played. He was sparkly eyed and pestery! And as ususal, he is still very demanding and bossy! Sometimes, he is very moody and pouts when he doesn't get his way! Do you think he is possibly a little spoiled from all the attention he received while sick? Nah....couldn't be! I may have to ground him from the phone! That would definitely get his attention! I told him that the other night and he told his Dad, "I can't believe I'm grounded from the phone!" He was mortified! He pouted forever!
Spencer is still ok. I did take him to dr and they tested him for strep which was negative! Thank God! He will get to keep his tonsils unless he begans getting strep frequently again! I have talked him into gargling water every night and hopefully that will work until I can add some salt or listerine to it! I'm sure he will not gargle that right now! He can barely stand toothpaste! He likes the Superman toothpaste! I'll never tell him it the same stuff just in a different tube! He is a card! He wore yellow to support his bus driver today! He had on yellow shirt and pants! Yes, I found a pair of windbreaker pants that were yellow that he could still wear! He loves his bus driver, Jeff D! Thanks Jeff for doing a great job!
Spencer scored a perfect score on his PALS testing! I knew he would! Hopefully, I can get him back in the Accellerated Reading program again this year.
Praying for Matthew, Ty, Devin, Sam, Khalita, Will, Marshall, The Stuarts during Abbey's angel anniv., Wesley, Dianna, Amelia, Evan, Charisse, and so many more in bone marrow failure. There are lots in need of prayer and really could use some encouragement as well as prayer right now.
Praying for miracles,
Donna
Monday, October 16, 2006 6:53 AM CDT
Hello,
Well, on Fri Nicholas platelets were down to 18k and we had a repeat cbc on Sunday. He was coughing up blood and I knew they were low. They were down to 7k! Yes, we went for a transfusion yesterday evening! He did fine through it and started breaking out in hives after we got home! I had to give him another dose of Benedryl. Thank God I asked for a standing order on weekends! Yeah, right! No one could find their copy! or thought it was just for that weekend it was sent in! I had to fax another copy to home health to get the ball rolling again! Why does something so simple have to be so hard! We were there around 4 hrs too! Needless to say with a Benedryl dosed little guy and 4 hrs for transfusion, I was Grumpy Bear!
Nicholas was dizzy Sat evening and told me he needed a platelet transfusion! We did have a good weekend though. I started sorting out there winter clothes! I couldn't believe how much Spencer has grown! His arms and legs were just too long for most of his clothes! Thank goodness Nicholas' is just a bit bigger and we can still pass them on down to Spencer! Now, Nicholas is going to have to have bigger pants too! He is just too big for his britches! HA!
Spencer conned his Dad into going for Pizza! They had a good day though. He crawled up in Dad's lap and told him how much fun and what all they had done that day! It was precious! He is so sweet! I do have him another dr appointment today! He isn't going to like it though! I do think his tonsils will have to come out at some point. It will not be a happy situation though!
Pray for Matthew, Super Sam who is going home, anywhere is home as long as you aren't inpatient, and Devin's BMT day was Friday! Pray for all the chilren preparing for transplant. It definitely isn't a picnic. Not having an option on going to transplant isn't a picnic either! Feeling so helpless, not being able to fix it, watching his counts just go down, needing more frequent transfusions, getting more meds but not the same results as before, definitely isn't a picnic.
"How does God talk to you? How does God save you?" were the questions on the way home last night! When God knocks on your door, please open it and let Him in. God is good all the time!
Salvation, Healing, and Miracles,
Donna
Thursday, October 12, 2006 7:06 AM CDT
Hello,
Nicholas is doing good so far! He is back to his little sassy self! He is still doing well with his school work but just doesn't like to do homework! He has had lots to do and make up when he was sick and didn't feel up to it! I think we are going to have to work something out to get him interested in doing his homework! He works so hard when he works but can really play us all! He is learning all he has to say is, "I'm so tired!" BUT that isn't working too well now!
Spencer brought back a pumpkin from his field trip. Dad went with him and they had a great time! They painted faces on them. Nicholas painted his a pirate and Spencer painted his pink face, purple eyes, and spagetti for her hair! It was so cute!
Lift up Matthew and family. He is struggling so hard right now! As long as there is breath, there is hope. GVHD isn't any fun! Ryan, John, and Jordon are all dealing with it! Pray for all. Pray for strength and wisdom in the decisions that they all have to make. Remember Jacy, they have found her adrenal glands have stopped working! FA can cause a host of other problems but definitely endocrine issues as well as leukemia.
We all need a miracle.
Blessings, Miracles, HOPE, and Bear Hugs,
Donna
Tuesday, October 10, 2006 9:03 AM CDT
Hello,
We have been to Cincy and gotten a g-j tube changed! His platelets yesterday were 78k! but he is dropping at 20k per day....meaning by Fri he will be back down to 8k! Meaning another transfusion! We are changing some meds. Still on antibiotics until Sunday and Dr Harris wants to go to every other day on his g-csf and also adjusted the strength according to his weight. I'm going to have to get a dry erase calendar and mark the days to give the g-csf. That way, whomever is babysitting that day will know what to do! This is getting complicated! Maybe between the three of us, we will know what to do! Goodness!
Frances' husband had a knee replacement yesterday but I didn't hear how it went. Hopefully, everything went well and we will be back to a more stabel routine at some point! It's getting more and more difficult to keep everything straight! She has three daughters to help her though and that will sure help! Remember them!
Praise the Lord that Matt has rebounded! Pray for strength, courage, and peace with the decisions they have to make. Sometimes the smallest of decisions make a huge impact on everything! Wisdom is also needed.
Remember Sam as he is doing great but spiking a few random fevers! Remember Devin as he goes for transplant!
I know I haven't updated on my little guys but there is just too much to say! I'm still a little groggy today! Hmmm, maybe I'll just stay in this fog for a while.....Why is it when the dr doesn't say a whole lot that it makes me worry more?
I know! I know! I need to let Jesus take more control! I'm still a work in progress you know! whew! Does HE have his work cut out for Him! He will whittle away some old junk and I'll pile it back on! Just human I guess! Why don't we leave the trash pile where it is and not carry old baggage back? Why don't we just trust? HIS plans are far greater than ours! Into Your capable hands, I place it all Lord, again. You know, He doesn't take all the pain away. He allows me to pick it back up and wallow around with it for awhile. Each time, I learn something new as I place it back in His hands.
Miracles, wisdom, and peace,
Donna
Thursday, October 5, 2006 7:07 AM CDT
Hello,
Well, Nicholas' sputum cultures came back with id and sensitivities and yes, you guess it! We had to change antibiotics! Now, I have a fridge full of antibiotics that we cannot use! This is horrible! But, he was up this morning and feeling chirper! He is so sweet! He sounded really tight this morning and different. Hopefully, the pneumonia isn't worse and the antibiotics continue to work.
Spencer is still doing ok. He was taking a nap when I got home yesterday evening! Tonight is teacher/parent conference! I'm going to check and see if they can get him back in the Accellerated Reading program. They made an exception for him in Pre-K! It isn't suppose to start until 1st grade! Hopefully, they can!
Pray for Matthew, he wasn't processing fluids correctly and began swelling yesterday. This rollercoaster ride isn't fun believe you me! Pray for strength and courage that only God can provide during a trying time like that. Matt isn't listed as icu right now. God is good all the time!
My niece Stehpanie is getting married Fri night! Please pray that God will bless this union. Brad is a real sweet heart. Hopefully, I'll be able to attend but Nicholas won't be able to.
With Winter approaching, I guess he will be inhouse except for transfusions....Winter will be long for him. If you can send him a card occasionally, that would help. He loves getting mail! Thanks to everyone that crosses our path, God knows who to send when and where.
Praying for peace, comfort, understanding, and grace for each moment.
Donna
Wednesday, October 4, 2006 12:02 AM CDT
Hello,
Nicholas has improved some. He was feeling better and laughing a lot but still breathing fast at times. His temp is hanging around 100d, spiking at 101d yesterday. It has been 100.2 today. His trach cultures are growing a couple of bugs and we are waiting on sensitivity tests. Hurry up and wait! My life's story! Patience is a virtue and one that I'm lacking! Ha!
Ok gotta tell this funny! Nicholas was needing some deodorant and yes, I bought two little travel ones. One for him and one for Spencer! After Spencer's bath last night, he just had to try on some! Giggling the entire time! Have you ever applied deodorant to a race horse while it was giggling? Try it some time! Well, then he went to the kitchen to let Nicholas and Dad have a smell! Nicholas told him to smell of his! Spencer said, "Hmmmmm, that smells like a peanut butter and jelly sandwich!" Dad and I burst out laughing! Too funny! He LOVES pb&j sandwiches! This has brought several smiles to my face today!
Making me frown and pray harder is Matthew. Pray that it is not chronic gvhd. Bless his little heart, he is very weak and really needs prayer. Pray for Mark, Diane, and Alex too.
Blessings, Miracles, and Bear Hugs,
Donna
Tuesday, October 3, 2006 9:10 AM CDT
Nicholas is some better but temp just now went back to 101d. He seems a lot better. His left lung sounds so much better but the right one does not! He is sore and I cannot pat very much. He asked me to pat last night and said, "If you pat where I'm sore, it will make it better!" So he let me pat for a little bit. The antibiotics are causing him to itch again....we are pre-medicating the medication! Woah! Benedryl before the synercid in hopes that it will work! I did get the report that his lungs are growing two different bugs....that haven't been id yet! Should know something by this evening.
Spencer was diagnosed with Chronic Cryptic Tonsilitis! Meaning, he has deep pockets behind his tonsils where food or bacteria accumulates and grows white cheesy crusty stuff! The nurse practioner scraped it off yesterday and Spencer was furious with me! Broke my heart! But Wal-Mart and Superman toys made everything all better! He is into Superman now big time! Wants a Superman cake for his birthday! I think he likes the big S!
We now have a venus fly trap! Ms Trish brought Nicholas one yesterday! We captured a flying fruit fly and watched it in action! Nicholas and Spencer were totally amazed! They loved it! Nicholas wasn't feeling very well and laid his head down on the desk and she cut the lesson short! But I heard that she could sing and she graced us with her beautiful voice! Thanks Ms Trish!
Pray for Mr Matthew, he is struggling right now. Pray for relief of stomach pain. Pray for Super Sam, he is doing good and his counts are going up! Great news!
Pray for Nicholas, for his pneumonia to disappear!
Pray for all the families going through tramatic diagnoses!
Blessings, Miracles, and Bear Hugs,
Donna
Monday, October 2, 2006 7:32 AM CDT
**
They have called from school and now Spencer is now throwing up! Going to dr with him.....pray hard! Thanks for all the continued prayer......
Hello,
Yes, we were in the hospital for two nights! I took him to the ER on Fri evening. The Dr there said his lungs were clear and the xray was ok. I was totally floored! He had begged for tylenol for pain on his right lung. I knew he had pneumonia. Well, his cbc came back with platelets down to 8k! That is why she admitted him! For platelet tx and observation! I knew he had pneumonia. He was in respiratory distress which means his oxygen level was at 90high pulse rate of 148, respiratory rate was high...can't rem the number but was 44 later in the room.
Anyway, I wouldn't take my dog to Dr Bluyot! Long story short, it took forever to get everything done and he didn't go to sleep until 3 am. Dr Begley came in on Saturday and said when his fever was gone we could go home but on Sunday, he let us leave. He is on two IV antibiotics. Pray that they work!
He also got platelets the first night we were in there and then red cells on Saturday. Yes, it was two weeks ago that he had gotten red cells. But he needed the oxygen and I could tell it really perked him up. It helped him breath easier, and helped his blood preasure and pulse rate came down. We would have had to get red cells this week anyway, his hgb was down to 8.2. He is breathing fast this morning and we will probably have to put him back on oxygen at home to boost him.
Spencer got to spend the night at Sissy Bears and wanted to the second night too. BUT guess what happened this morning, he had broken out on his chest and back and was itching! It happens every time he spends the night down there! We told him he was allergic to Sissy Bear! LOL! I think he is allergic to her washing powders or fabric softner one!
Please pray that the antibiotics will help Nicholas fight this stuff. Pray for Matthew and Sam, they are both having tummy pain from transplants for FA! This disease is horrible. I hate it. I hate that it is taking the life out of my baby. I feel so helpless. There is a rage building up inside of me and I know it will burst forth at some point and will flood the place. Only God can help us at this point, with healing or peace and contentment with the decisions we all have to make. The sadness is creeping in all our hearts and showing up in our faces.
Praying for peace,
Donna
Friday, September 29, 2006 8:18 AM CDT
**Please pray for Matthew, he is giving up and all of them need prayer...
also pray for Sam, he has developed a rash and having leg cramps
Hello,
Please pray for Nicholas. He is now chilling and had a high temp at 2 am! He had a really good day yesterday and only complained of his leg hurting. I told him I'd gladly take his pain away if Jesus would give it to me! He got so mad at me! He said, "NO! I don't want you to hurt! You'd scream too, it hurts really bad!" I was in tears a lot yesterday!
Nicholas was telling Mamaw and Papaw about his fiance! Oh! You should of heard him! He was planning everything down to the last detail...including what to serve for food! He is serious about this! I guess we had better plan a wedding at camp sunshine this year! He even said, "Mom, I just had an idea! I need to get Alessandra a gift!" Then, told me what he wanted to get her...a heart necklace!!!
I took Spencer to school for Family Night. He made Gummy Bear Graphs, Silly Slime, and M & M Patterns! We also went to the book fair! He got a bug vaccuum! Yes, it requires batteries! We need to own Duracell! Everything in our house requires some type of battery! Hmmm, maybe my batteries need replacing as well! Ha!
That reminds me...I took Nicholas temp yesterday and then last night could not find the thermometer anywhere! Dad and I searched the house over and could not find it! I figured out that Nicholas must have hidden it! I walked back into the kitchen and there on his computer table was his treasure chest! Aha! Yes, it was there! He asked Fran this morning where she found it! He just smiled when she told him that I found it! He is forevermore hiding stuff! Little stinker!
Oh, Nicholas' counts were 29k yesterday....down from 105k on Monday! IF we don't end up in the hospital, we are getting another cbc on Sunday.
Miracles, miracles, and more miracles,
Donna
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