Friday, June 30, 2006 6:55 AM CDT

Hello,

Tonight is the big program at Davis Chapel VBS, where the children present their songs to the community! I'm hoping Nicholas and Spencer will do well. I had a feeling something was going on with Spencer and last night it was evident! His throat is sore and he was chilling. I had to do all the activites with him and let Nicholas go with his leader. Its hard to be with both and that has torn my heart out all week. Nicholas did well without me and Spencer did better with me! He just needed Mom! I just hope its not strep again. He finally played with the others and I think he is hurt at Kassie. He takes everything to heart and when she sat beside of Nicholas it hurt his feelings! Then, last night he said she hurt his arm! But they were laughing, playing, and chasing each other so I guess all is better and on the mend.

Ms Erika presented Nicholas a framed photo of them together! Nicholas' face lit up and he smiled from ear to ear! It was so precious! She is a beautiful young lady and this has been going on for three years in Nicholas' eyes! It is so sweet and he has had a ball keeping her Uncle Morris away from her! He turns into Grizzly Bear and fusses and quarrels! Morris pretends to get scared and runs away, much to Nicholas' delight! Oh, they have had a wonderful week. Next week will be so lonely for them!

Pray for Ms Sunshine Abbi, she has mouth, hand, and foot virus! Nicholas wanted special prayers for her last night. Also, please pray for all the children needing transfusions and the adults too. Please Give blood and help restore life. If only you could see Nicholas before and after each red cell transfusion....it really perks him up.

Blessings, Miracles, Strength, and Courage
Donna

Thursday, June 29, 2006 9:27 AM CDT

Hello,

Well, today is Robbie's funeral. Please remember them in your prayers. No, I haven't mentioned it to the boys and may not..only if they ask. They may ask at camp and that would be horrible but that may be the best place too. Too much excitement going on and lots of distractions!

Nicholas face and arms have petechia all over them and so do his ear lobes! I don't think we can wait til Monday for a transfusion and will probably get one tomorrow or Sat. Its horrible to be in a crowd of children and worry about them running into him.... but Friday night is the big program for the community! He won't be as active then so hopefully we can wait until Saturday for transfusion.

Miss Erika was there last night and he was in seventh heaven again! They also had Rowdy, the Canine unit there to introduce them to the children. Everyone loved Rowdy! I could tell Nicholas is winding down and the music lady, Breann told him that we didn't want him to get too tired! He said, "I'll never get too tired for this!" So precious!

Spencer was tired and a little cranky last night! He wouldn't let anyone take his picture! He loved Rowdy though! He just laughed and giggled! He loved the Fire Engine too.

GIVE BLOOD AND PLATELETS! Pray for all those that are dependant on your generosity, your act of unselfishness! Thanks from a Mother's Weekly National Disaster!

Blessings, Miracles, Mercy, and Grace,
Donna

Wednesday, June 28, 2006 11:02 AM CDT

Hello,

Nicholas' cbc came back with his platelets at 20k! Whoooopeeee, no tx today anyway! His HGB is 10.3, and ANC is 880.....he was transfused on 6/20th! That means he may go til day 10! They are dropping 17,000 per day on average....so Friday may be the day....don't think he can make it all the way to Monday! Would be nice but I'm too realistic!!

He got a little tired last night but was still able to finish VBS and flirt with the girls! I'm so thankful we are able to go tonight! Wished he was tanked up by Fri night but that would be horrible if we missed the program night for a transfusion! They were so cute last night during practice!

Spencer was fine last night and told me everything they did...he is so sweet! He was precious yesterday too. He opened the door for Nicholas and was just sweet to him. He had gone with his Dad and maybe a day apart is what they needed. A break from each other. When I got home, Nicholas was asking where he was....I think they really missed each other. They are playing really well today.

Remember all the FA children and families. Many are getting their first time drops in counts and its definitely a reality check. It amazes me that looking back over his counts....we have been dealing with this for 2 yrs. Fighting dropping counts. Trying different meds. Hopeful then crashing. Praying for miracles. Rollercoaster rides aren't fun if you do them on a weekly basis. I am feeling the effects, it seems to get harder with each transfusion and rebounding is getting so slow! Then, Nicholas will grab my face and give me the biggest, longest, sweetest, most precious kiss and my heart soars! Never fails to get me bounced back and running again!

Give Blood, Give Life, Get Blood, Get Life; or get kissed by Nicholas and renew your spirits!

Miracles, Mercy, and Grace, along with a few more kisses,
Donna

Tuesday, June 27, 2006 1:14 PM CDT

Hello,

The phone rung last night and it said out of area...Nicholas said......"Hi, Its just me....I was calling to check on you and Spencer!" in his best Marci voice!!!!!!!! I couldn't help but crack up at him! He is so funny sometimes! I think he has missed Ms Marci since he has only talked to her one time in a while..and then conned her into reading him a story!

He was bouncing off the walls with excitement on going to VBS! That may be why he has a touch of diarrhea because of the excitement? May be! Yes, he was boss again last night and told Breann the number on the cd for their song! He is precious and everyone thinks so too...not just my opinions! Ms Sadie is his leader and she gets lead all over the place!! I declare they would spoil him rotten!

Spencer is just full of himself too! We get to see each other as they are in different classes. He is always so happy to see me! I feel that I'm missing out on his class too but he is probably doing better without me! He was telling me all about what they were doing. I wish I could at least go between them some...but I just can't risk Nicholas by himself with his platelets getting low.

We are getting a cbc in the morning and hopefully he won't have to get transfused and miss VBS. I think they are roasting hot dogs tonight! They will love it!

No, I haven't told them about Robbie. It has effected me so deeply and hit too close to home. I need to deal with it first and then maybe, I won't cry telling them. I dread it so much. Will and Kayla released balloons and that is such a good idea. And Spencer will ask me a bunch of questions.....maybe I'll just not tell them unless they ask. I'm sure they will, they are all ears and will pick up on our conversations at some point. Remember Robbies' family as they prepare for the services on Thursday.

Praying for peace, strength, and miracles,
Donna

Monday, June 26, 2006 7:40 AM CDT

Hello,

Be sure to check the photos for Spencer's fish too! He was so proud of himself!

We had a good weekend. The boys have really enjoyed themselves and their new scooters! They are so happy with anything! But they need to get rid of some toys that is for sure! I guess its past time!

Vacation Bible School began last night and that is all I heard all day long! "Mom, what time is it?" The LOVE VBS! Nicholas girl friend Erika is there too and he is in seventh heaven! She was his chosen one three years ago and still is! He is trying to guard her from all the others and it is so funny! I think they are really going to have fun and hopefully learn lots of good stuff! Not from all those girls though!!!

Spencer is in the same class as Kassie and he is fine! He did get upset when he thought they weren't going to listen to one of the songs his brother sings anymore! After he found out they were, he was ok and is singing really good! I think he read the bible story for them last night or to the lady that was listening to him! She couldn't believe he was reading so well! Nicholas did his lesson really well too! He answered some of the questions.

DONATE BLOOD, PLATELETS, AND BONE MARROW! PLEASE. Statistics show that only 5 percent of healthy people donate blood. That is horrible! What do you need to know? Is it awareness? I was talking to people last night and it seemed that they just do not understand the need. I love for people to ask me questions! I'd talk all day about it! Now, did I understand the need before Nicholas came along.....well, no.....not really! NOW I do. I understand the process. First a person donates blood products or platelets, and this could take a couple of hours. Yes a couple of hours out of one day.......and you have given life for a MONTH!..platelets live for 9 days typically....so platelets give Nicholas another WEEK. A couple of hours of total unselfishness! Yes, you have time... Now on our end.....do you know how much time is involved in getting a transfusion....we'll skip the getting dressed because both parties have to do that! It takes us half an hour to get to hospital, by the time we are registered and in the room, is about an hour. Then, it can take up to 4 hrs for the transfusion, depending on reactions and the medical staff. SO a total of 4-6 hrs or more to receive the transfusion of platelets... Blood takes a minimum of 3 hrs just getting the transfusion plus all the other time for preparations plus an hour to cross and type the blood products. Now sometimes he gets both at the same time....meaning a minimum of 10 hrs..... We HAVE to find the time to get the transfusions! Now, can you find a couple of hours in your WEEK?

And I think of Robbie......getting those transfusions every other day.... BUT NOT anymore! He is FREE of transfusions, needles, drs, nurses, and hospitals and in the everlasting arms of the FIRST Blood donor!

Pray for Brenda, Mark, Dad, and siblings...as they attend to Robbies arrangements and funeral services. Pray for the peace of all understanding to shadow them.

Mourning and Praying for Miracles,
Donna

Friday, June 23, 2006 12:15 AM CDT

Hello,

Nicholas was in fine form yesterday evening! It was really humid and he was wringing wet! He wouldn't stop though and played ball with Mary Bear! Spencer was too! Between Scrunchie and showing out for Mary, they were drenched!

Today, he woke up with a low grade temp but it is now gone. He is a little droopy but that will vanish when I get home. Hopefully! I'm sure he will perk up when Frances tells him that Scrunchie caught a mouse!!!! Yes! He got his first mouse at our house! Wonder if that is where he got his name? Ewwwww!

Well, I guess that's all our news so far! Now, on to the others...
Robbie is still holding his own...
Charisse is still hoarse and in lots of pain, but now on different meds so hopefully she is on the mend!
Chelsea is fighting a couple of viruses but heading home asap! or at least out of the hospital....
Will's Mommy Kayla had a big birthday yesterday......so Happy Birthday Kayla!.....even if you don't feel like celebrating!
Ty has chicken pox! ARG! and may not be at camp!

Pray for all these and there are at least 400 more just on our list! Pray for strength, courage, wisdom, and grace.

Miracle Begger,
Donna

Thursday, June 22, 2006 12:40 AM CDT

Hello,

I forgot to update! Nicholas is rosy red cheeked and flat footing! He was just slapping his feet against the floor and dancing to his own tune! Too funny! Even his legs looked better and had more color! Talking about raising the dead...that is what red cell transfusions do......gonna nickname him Lazarus! Lazarus Bear!!! LOL!

Spencer....still playing with Scrunchie T! I like that one, just made it up! Spencer says STP, first, middle, and last names! I'll have to run that one by them...Scrunchie T Oh those precious giggles!

Robbie News: Brenda sneezed and Robbie said, "God Bless You!" and his oxygen level went back up! Whooo Hoooo! A Lazarus Bear definitely! Thank you Lord for one more day!

Will, please remember Kayla and Will. Will's counts have dropped again.

Talia, has a virus and going through bmt.

Chelsea having 2nd bmt.

Charisse News: Still battling ENT issues, throat swollen, and she sounds like she feels terrible....Please pray for her. They lost their cat too and Issac is taking it really hard and relating it to him mom being sick..Charisse is having to answer some really tough questions.

Sickness doesn't only affect the patient, it affects everyone in the family, extended families, and friends. Pray for all our families going through illnesses. They all stink! The illnesses not the families!

Begging for strength, courage, and miracles,
Donna

Wednesday, June 21, 2006 8:21 AM CDT

Hello,

Nicholas did get his transfusions, both platelets and red cells, yesterday! He did well! No allergic reactions. He was nervous about getting the meds and only complained a couple of times with the c-line. I think its all physcological of the Benedryl ordeal. He feels the effects of the med and that is when he get a wild look in his eyes and he then gets so angry! It makes him really grouchy and instantly changes his personallity! Antihistamines have always affected him that way. I steer away from them when we can. He was asking, "When are you going to stop giving this to me?" :(

Spencer absolutely loves that little kitten. He giggles and giggles! I think everyone wants to name him something different! Right now it is Scrunchie Tommy Precious! Maybe we could take a vote on it! Please submit a vote and I'll let them know the most popular vote!....but they will still have the ultimate say!

Pray for Robbie and family as they are trying their best to have quality time with him in his last hours. Brenda deserves Mom of the Year! I admire her strength and courage during all of this! She is one remarkable Mom!
Pray for Charisse, she had to put her cat to sleep while battling major issues herself. Pray for all the cubs, we have over 400 and many still need a prayer partner. If you want to become one of Papa Bears' Prayer Bears, please fill out the form to join the group and help pray for miracles.

Praying continually for strength, courage, and miracles,
Donna

Monday, June 19, 2006 2:04 PM CDT

Hello,

As you can tell, we went to Black Creek for a picnic! It was a great day and the boys had a ball! Well, actually I should say a fish!! Spencer is casting beautifully and will tell Nicholas, "Brother, I'll cast it out for you!" Sure! He just likes to show off his casting skills and will volunteer every time! They enjoyed it so much though and wanted to go back on Sunday after church too. Nicholas would reel in a fish and giggle continuously! Soooo precious! Spencer would reel it in and copy Dad's actions to a "T"! Then, he would get so excited and ask Dad to get it in! He would grab the net and help everyone get their fish in! One was tagged and they got money for it! Whoo Hoo! And a kitty cat! Yes, we packed home the kitten named Scrunchie! The kitten perked Nicholas up somewhat!

Nicholas' hgb is down to 7 and watching him this weekend it was obvious he needs a transfusion. He was very tired and would lie down several times during the day. He tries so hard to be "normal" and was racing this little girl and it totally washed him out. He ran a pretty good distance but he was so winded afterwards and just collasped! Scared me and then he got his breath, walked to Dad, and was "I'm too tired!" to do another thing. Broke my heart. Also breaking my heart, is his central line. He is complaining every time we flush his line now. He didn't do that with me earlier so now he is...meaning something is wrong with it. Yes, we have to go to Cinci at some point and get it checked out.

Pray the c-line is ok enough to get these transfusions this evening, both platelets and red cells. His platelets were down to 15k but he coughed up some blood this morning and he needs a transfusion to be on the safe side.

Pray 4: The family of Danny Price, I work with Cheryl and he had a fatal massive heart attack yesterday. Please remember the family in your prayers. Pray for Robbie: he is about the same, Charisse: she needs healing, her son Issac also is sick, Miracles for all........

Blessings and Bear Hugs,
Donna

Friday, June 16, 2006 12:16 AM CDT

Hello,

Please remember Robbie and his family...mi/robbie. He has made a turn for the worse. Please pray for strength, courage, and wisdom.

Nicholas has a runny nose and his coloring is way off. He is dark around his eyes and mouth. He says he is so tired! With a hgb of 7.8, it is no wonder. You couldn't tell it last night though! We were trying to locate the puppies by following the STRAY mommy dog around. He was running through the yard and I was pretending he was just too fast! He was giggling and laughing so sweet! Precious! It was afterwards that he crashed! He was out of breath and just lay down in the floor! He had ran out of fuel!

Spencer thought he saw a snake under a piece of plastic! He said it had a white tail!!! He wouldn't get near the place again so I'm sure he saw something! Then, he put his green snake in the bath tub...it looked sooo real! I put it in a towel to dry it off and we left it for Frances to find this morning! They loved that idea and laughed and laughed! Oh, that michevious grin and twinkling eyes! She said she picked it up and it hit her foot! I wish I had a video of that dance!!!

Please remember those making these difficult decisions, about life and death, treatments, protocals, clinical trials, and all the rest! Remember Charisse as she struggles with FA. Remember Robbie and his family. They had another week together! Cherish every second you have with your loved ones! Enjoy them, love them, re-connect and ask for forgiveness!

Miracles, Blessings, and Grace,
Donna

Thursday, June 15, 2006 1:13 PM CDT

Hello,

First things first.....his chest is swollen on the left side! He feels when the nurse flushes his line! Then, it hit me what I remember seeing in church on Sunday. Someone picked him up via under his arms.....and I guess it has aggravated his c-line! ARGGGH! Also, has stretch his stoma around his mic-key button and its really tender. I guess I will have to hang a sign around his neck...."Here's your sign! Don't pick me up!" or be hermits from now on! That is so possible! We don't go anywhere anyway! Only time will heal and pray that there's just tenderness not damage.

Now, breathe! His platelets are 73K!!! Sounds higher to me but then again its only been 5 days since transfusion...but I was expecting 21!!! Goooood surprise! Hgb is down to 7.8 and ANC is UP to 1450!!! That can also be bad! His white cells are higher indicating that he is fighting something! Higher but still on the low side of normal!

The boys have played, played, and played! They had a great day yesterday and today! Wonderful and sweet! Nicholas was wanting to come back into the house and needed help. Spencer said, "I'll help him Momma!" He ran and carried his "milk bag" into the house! So precious! Frances has dubbed Spencer as "Fire Ball Boggs!" Tooo funny!

Remember Robbie, he is down to 40 percent O2! Yes! I'm so thankful for them. Remember them as they have very difficult decisions ahead of them! Remember all the ones making decisions.....

Blessings and Bear Hugs,
Donna

Wednesday, June 14, 2006 8:07 AM CDT

Hello,

Well, I didn't hear from the blood culture yesterday! I guess that means...not positive yet! I just called and they said it was negative! Whoo hooo! Now we have a fridge full of a weeks worth of antibiotics! What to do with them? They are good for 6 months! and then we will have to trash them....that's a horrible thought! But if he is allergic to them, we will have no choice.

Nicholas enjoyed his visit with Carolyn and Kim! Kim brought Ethan with her and they all played together! Spencer and Ethan played really well together and asked Ethan to spend the night! He told he would one of these days! They told Franzy yesterday that the "Lipstick Woman" was coming over! Tooo funny! Nicholas sang them songs.."Jesus Loves Me, Amazing Grace, We got the Power, Throw me a Peanut, and What a Day!" He sang at least one verse in all of them! So sweet and precious!

Frances just called and said Nicholas has a 99.9d temp. He has been clearing his throat a lot recently and he had a bad gas spell at 5 am!!! I can't stand those bad gas spells when you can't get the gas out of his tummy via the g-tube. It so frustrating! I didn't realize what we had been through for 4 straight years until he stopped having them! How on earth did we survived them? Now, with his platelets low, it is terrifying! He strains so hard and it scares me......its frustrating not to be able to help. I get so angry at that g-j tube! This morning, I just hooked up the extention and lay it on the bed while I suctioned him and you could hear the gas whistle out! He turned and looked at me like he couldn't believe it was coming out of there! Bless his little heart!

We didn't hear from Robbie yesterday..meaning hopefully Brenda is just too busy keeping him occupied! That is a good thing believe you me! Continued prayers for Charisse, Uncle Wayne B is on my mind this morning too, lots of families going through difficult decisions....pray for all of them too.

Blessings, bear hugs, and miracles,
Donna

Tuesday, June 13, 2006 8:43 AM CDT

Hello,

Nicholas and Spencer were in fine form yesterday evening! They were laughing and playing with these little missle launchers that are made out of foam. Thanks to Aunt Cathy they have been really occupied with them! They all played together on Sunday and yesterday! When they didn't put them on the roof that is! They have really enjoyed those! Spencer will just cackle out laughing and get so tickled he can't do anything. Everyone gets tickled at him! He is too cute!

Well, on the Nicholas front, they have repeated the cultures.... to see if he really needs to be on antibiotics. He doesn't have a temp or any signs that anything is wrong. He is laughing, playing, singing, and being a little mischevious pest! One with twinkling eyes and that precious impish grin! Loves to quarrel with Lipstick Kim on the phone! Loves to listen to Ms Marci Bear tales or books being read to him. Loves Carolyn's crazy fox made up stories too! Loves for Mary Bear to read him stories too. He loves all of them! He loves books but his eyes get tired so he likes them told to him better! He likes having everyone cater to him! I courtseyed to him last night when he was deplicting his orders for ice water and yogurt, saying, "Ah, Yes your Majesty!" He smiled, had a sheepish sly grin, and then his little face burst into a huge smile! He LOVED that idea! He is rotten to the core!

Praise the Lord, Robbie is down to 60 percent O2! YES! Charisse's ear ache is lessening too! God is good! Rem Chelsea with her 2nd bmt. Remember the families of ky/will, fl/jacob dealing, and with their Heavenly healing. Sweet little angels. Rem. the family of Burnis Stanley.

Praying for miracles,
Donna

Monday, June 12, 2006 9:07 AM CDT

Hello,

Well, blood work came back with his platelets down to 9k on Friday. We went Sat after the platelets got to the hospital and had the transfusion. He did really well with his transfusion but the pre-meds he had problems with. It had to be stinging or something, he cut a pure little fit, crying and screaming for us to stop. He was furious! He kept asking when I was going to stop doing this to him. Oh it was horrible! Heart breaking! He was too worked up and I was afraid with his counts so low that he would burst a blood vessel. One of my worst fears! He finally calmed down and forgave me.

Spencer spent the day with Dad! I think they had a ball! He let the boys plant pumpkin seeds after we got back home! They loved it! Nicholas wanted a fire to roast hot dogs and marshmellows, every evening this weekend! So we are full of hot dogs! He doesn't even eat but likes everyone there to keep him company.

Sissy and Daddy Bear left on vacation and Nicholas was looking out the window and said, "I don't think I can LIVE without Sissy!" If she had heard him, she wouldn't have left!

Praise the Lord, Robbie is breathing on his own! I know they are ecstatic! Please pray for continued recovery. Pray for fl/Jacob, ky/Will, Charisse, all the FA families, and all the sick children.

God is good all the time!
Blessings and Bear Hugs,
Donna

Friday, June 9, 2006 9:51 AM CDT

Hello,

Nicholas was lying face down on the bed with his arms spread out on both sides and his legs straight. I asked him what he was doing. He said, "Look Mom, I made a cross." I said, "Yes you did, good job!" He said, "It means that I love Jesus, I believe in Jesus, and I'm going to obey His word!" I didn't know what to say! Dad came in and he demonstrated the cross again and said the exact same thing.

You know what? I would love to be more like him. He radiates love. He radiates God's love. He loves you. It doesn't matter who you are, he loves you for what you are as you are, no questions asked. He is an inspiration. I'm was already amazed and he keeps amazing me more and more each day. I know he is only a child but he is an anointed child. We have been so blessed with our boys! Thank you Lord for all this precious time with two of the best! The opportunity to love, tickle, and hold such precious gifts. The pats on the cheek from Nicholas' little hand is a priceless gift when we snuggle.

Pray for all that are struggling right now. Charisse has a severe ear infection, Robbie, I haven't heard from them since Wed., pray hard for his lungs to heal. There are so many that need prayer.

Do me a favor.....make a cross when you lie down tonight! and feel the difference!
Blessings, Bear Hugs, and Miracles,
Donna

Thursday, June 8, 2006 11:58 AM CDT

Hello,

Well, the cbc is back and the platelets were 18k, hgb is 9.1, and Anc is 1350. Another On Edge weekend! The itching has stopped! BECAUSE the antibiotics have stopped! Now that makes 2 he has become allergic to. I'm worried that he will become allergic to all antibiotics... but there are more to try. There HAS to be more that we can try...that is sensitive to whatever bug he is growing. This is a new development for sure....

Nicholas is singing to the top of his lungs today! Yaaaahh! No benedryl equals one happy baby! No ithing means no crying and screaming for MORE Benedryl! UGH! It is like a storm has hit and we are cleaning up the mess. It will be catch a little breath and NEXT?

Prayer requests for Nina, she had a tumor removed, Robbie, kidneys are working again and need his lungs healed and pray for his fever. Charisse, has a terrible cold and requested prayer. Ben H, has a brain tumor and needs prayer. Jacob, Will, the list continues....The rest of the families need prayer too. Pray for all of us. Pray that everyone will be lead to go and give Platelets, Blood and become a bone marrow donor.

One more request...pray for a miracle,
Donna

Tuesday, June 6, 2006 10:35 AM CDT

Hello,

I've put off updating...and am making myself realize a few things......

Ok. Nicholas is now considered allergic to Levoquinn. We had to stop the antibiotics 2 days early. Now, this morning he has broken out in hives....IS he allergic now to Synercid? We have to give it now with Benedryl. This scares me. What if he is becoming allergic to all antibiotics? What if he stops responding to them? Only God knows the answers I guess. I know I'm being hit with a dose of reality and I'll face it when I have too but I can be selfish can't I? I want my baby to LIVE! I want it ALL. Yes, I'm hitting rock bottom but I still have hope too. It's hard to explain. I thank God for the time we've had together.

Our home has been so blessed with Nicholas and Spencer, their constant chatter is so sweet and musical. I just bask in it and listen. Cherishing those precious moments! Listening to them playing hid-n-seek with Sissy and Daddy Bear, laughing at their logic, and Spencer always wanting to be the leader! Nicholas always following along, pleasing Spencer is his main goal in life. He will do whatever Spencer wants to do, be it reading a book, watching a video, playing a game, or being Super Heros. Spencer has it made! They do take turns telling the other one what they are suppose to say! He wants Spencer happy and cannot stand it if Spencer is in trouble!

Nate, the Great is one of his favorite book series.....Now he wants a Dinosaur Book. He loves looking at the Animal books too. Or reading any type of book. I did make it to the book store this past weekend and found them some. One was about a little brave Cowboy and Curious George! They loved them!

It is breaking my heart that young people are just wasting their lives away, drinking, drugs, or whatever. Here I am trying with every fiber of my being to get a child help and the ability to live and they are just flaunting their life away. No purpose, no decisions, just energy enough to lift a bottle to their lips, wasting it away..damaging their liver without a thought in the world. NO thought of giving blood products to help a child. No thought of keeping their blood pure to give the Life saving Bone Marrow to someone like Nicholas that HAS to have it in order to live. Robbie could really use the platelets and they have cut his supply off because they have a shortage of platelets that supply the U of Mi! PLEASE sober up and go give platelets and blood products. Get a new purpose in your life and make a difference...where it counts...in your heart.

Miracles,
Donna

Monday, June 5, 2006 6:50 AM CDT

Hello,

Well, on Fri we went for platelets. He had a bad reaction, face and ears began flushing and I buzzed the nurse immediately. She got the iv benedryl ready and had to give it to him. It knocked him out! He was able to get the rest of the platelets and everything was ok. He was so sick! It totally washed me out. Spencer was with us and that wasn't good. We weren't panicky and I think that helped him to keep playing. At first, he was clingy but when Nicholas started vomiting, actually dry heaving, Spencer hid in a little closet! I just realized that's why! He was pretending he was a Super hero! Oh boy does he have an imagination!

Nicholas has been well the rest of the weekend. They did a culture on his mickey button drainage and it is staph. Guess what! Yes, he is back on antibiotics again....

Please remember mi/Robbie, he is in critical condition. He is on the ventilator due to a virus and his platelets are so low he is bleeding in his lungs...Please remember them in your prayers...

Praying for miracles,
Donna

Friday, June 2, 2006 7:19 AM CDT

Hello,

I went home and Nicholas' petechia was worse on his face. His platelets were 12k and hgb was 9.9. We were trying to hold off until Monday but I don't think we can. I'll see if we can get him transfused today.

He is feeling so much better! They were playing outside and I asked him if they were ready to come in and get ready for bed. He said, "No! We are never ready to come in to get ready for bed Mom!" Duh! Mom! I shouldn't have asked! Ha! He is perky and still singing! Last night it was a little bit of everything.....You are my sunshine, Jesus Loves Me, silly songs, and anything to make Spencer laugh! They are so cute! Rotten! but I just listened while my heart broke! I love that sweet, sweet little voice. It seems so much stronger! He was LOUD last night! I had his room on moniter and you could hear him all over the house!

Gee Thanks Kim! A GOOD friend wouldn't have left me a message in the guestbook!!!! She would have taken me with her!!!!!!!! Especially to Hawaii! Ahhhh, what are friends for but to make you dream, huh?

Thanks Angel Jen for the package for the boys! I know its been too long to thank you but I'm way behind in that department! Thanks Lauren for the beautiful "Cowboy" blanket! Nicholas and Spencer loved it! Thanks to all of you for the prayers that went up on Nicholas' behalf when he was so sick..I do believe he is on the mend now! I couldn't make it without those prayers going up!

Let everything that have breath, Praise Ye The Lord!
Donna

Thursday, June 1, 2006 9:35 AM CDT

Hello,

"I'm going to fly!" "Really!" "With angel wings!" "You know..when I die!" Nicholas' words......to Franzy! Not to Momma! He will ask me questions....yes, about death, Heaven, and Jesus; indepth questions! Yes, I did tell him that Jesus would send an angel for us when we passed away...but we do not dwell on death and Heaven....I only answer his questions. Yes, its heartbreaking but I have to put on my smiley mask and answer them. I don't dwell on the death part but the wonders and spendors of Heaven and being with Jesus. Spencer asks lots of questions and I know he realizes that Nicholas isn't feeling the best. Nicholas never asked if he was going to die. If he did, I would have to say...We all are going to die one of these days......and then talk about the joys of Heaven. God gives me the grace to answer without bursting into tears.

Spencer has asked. He is hurting inside..and it is breaking my heart that he has to deal with this at such a young age. He told Nicholas once that he would throw all the PICC lines away! He understands more and asks every detail..I tend to answer in the same way...slowly changing the subject to the joy of the Lord and no more sickness, needles, or bloodwork in Heaven. But I do not evade the questions...they need to know. Who else will tell them? They need to know I will always answer their questions. They need to know they can trust me in every situation. I need to tell them the truth....but presentation is everything! I do need lots of grace and wisdom to be able to tell them the truth and God's simple plan of salvation. Death is horrible to us but to a Child of God its just a step across the river! To everlasting peace, joy, and eternal life, forever to be with our Lord and Saviour! I want to go too!

We are getting another cbc today...I'm surprised we didn't go for transfusion but there wasn't anymore blood in his sputum.

Nicholas was singing to the top of his lungs in bed last night! Oh! What beautiful music to my ears! Actually, he is singing all the time!

By God's Grace and miracles,
Donna

Wednesday, May 31, 2006 8:53 AM CDT

***Platelets are 19k! Hgb is 9.8, and Anc is 540.....He is coughing up some blood so I'm sure we will get transfused....

Hello,

Well, someone touched the throne of Grace! Someone prayed through.........because yesterday evening, I could see the effects of your prayers! Praise the Lord! He was feeling better and acting totally different! Still a little itchy but that too seems to be fading.....he had to have to doses of Benedryl yesterday really close...yes, with the dr approval! I do believe it is a reaction to the Levoquin.

We had a great time yesterday evening, playing outside after it cooled down! It was 90d here! HOT! Too hot for Nicholas. He went outside and came back in and said he couldn't breath! Wanted to be on moisture! Yes, he knows what he needs. He went to sleep of course too! Spencer was loving on him yesterday and being so sweet! I think that is what made Nicholas all better! Ha! Spencer patted him and told him he would make him feel better! So precious!

We are getting another cbc today. Nicholas color isn't the best but praying his counts are holding on! I know he has petechia on his face but we will have to wait on the cbc results...What am I guessing? I'm guessing his platelets to be l7 to 21! Praying they will be that anyway! and going in the upperward direction...
I know, I know, he has blood around his mickey button but I can hope can't I?

Praying for miracles,
Donna

Tuesday, May 30, 2006 9:18 AM CDT

Hello,

Hope you all had a great Memorial Day Weekend! Spencer loved us being home yesterday and wore himself out trying to check up on me and then go "help" Dad! It was so funny!
He told Franzy, "Mom and Dad was home all day and we spent the whole day together!" He was one happy camper.


Nicholas was droopy on Sunday and begin itching on his shoulders.....we have no clue what is going on but Benadryl helped so we are suspecting a reaction to the Levoquinn.....but just his shoulders? It doesn't make sense but Nicholas always tries to confuse us! Then, yesterday, he was itching, crying, and begging for more Benadryl. Broke my heart! I tried everything topically I had but nothing seemed to work. He didn't have any energy at all and the Benadryl makes him extremely grumpy and he took a 3 hr nap! Which means he didn't get to sleep early last night and will mean a late morning today!

Yes! Just as I thought he is just so tired and has no energy this morning. I think he is still fighting his lung bugs...he doesn't sound clear yet. Pray that he will regain his strength and be my perky baby again. Pray he will get through this slump. I hadn't mention this but he was talking about Heaven again last week. I'm not ready for my baby to go to Heaven. I do not want to lose him. Pray he will recover. Pray that his counts will go back up. Yes, I want him healed. Totally and earthly. I want to hold him and feel his sweet kisses on my cheek. I want to feel his precious arms around my neck. I want to continue to hear, "Mom, I love you." each and every day, and more than once a day.

Praying for Grace and Strength, and miracles,
Donna

Friday, May 26, 2006 7:12 AM CDT

Hello,

Nicholas is back to his chipper self! He had a great day yesterday. Franzy hollered for Nicholas and he wouldn't answer her.....Spencer finally said, "I've got him in Time Out!" Franzy couldn't believe him! What happened was Nicholas caught a butterfly in a net but it died......and Spencer didn't quite understand and it made him mad! So he put Nicholas in Time Out! Well, it was funny! But we have to make Spencer realize he isn't the boss! Ah, too funny!

Nicholas was making up stories while Spencer took a bath and Spencer kept cracking up! He stayed in the tub for an hour! I'm glad they made up! Ah, life is good! Thanks Ms Maria for that saying!

We have to start Nicholas on another antibiotic! Hopefully, that will make all the bugs go away and we can get back to getting his counts up!!!!

Blessings and Bear Hugs,
Donna

Thursday, May 25, 2006 10:37 AM CDT

Hello,

Can you spell exhausted? I can't! I'm so tired...we arrived home late last night or I should say this morning! It was 12:45 am!!! Yes, Nicholas was tired too and his secretions were so dry and thick! ARG! He has to have his moisture or he dries out! Why are people so slow when you are in a big hurry? It happens that way or seems too. I guess you could say I'm impatient when it comes to my baby.....period!

Brigher note: Nicholas did not have one hive last night! PTL! God is sooooooo good! He didn't perk up like normal after the red cells but hey, it was late and he was tired!

We were in Dad's truck and Nicholas said, "I didn't know you could drive Dad's truck!" He was so shocked! Yes, straight shift and all! I actually like driving it!!! Move over Dad! I'm driving.....HA!

Spencer had fun at Mamaw's except for a scape on his knee. He did not want me to go to work this morning either! Pizza tomorrow night changed his mind! He loves Pizza and I promised Nicholas we would have a Pizza party! Come on over!

Pray for all in need......sick, salvation, homeless, and those in need of a friend.

Thank you Lord,
Donna

PS: Happy Birthday To Uncle Darrel and Keisha! Visit his site and wish him a happy day! visit/darrellboggs

Wednesday, May 24, 2006 7:14 AM CDT

**Results are in....platelets are 7, hgb is 6.9.....ANC is 840. Definitely will be transfused with both platelets and red cells. I knew he was low and we couldn't wait until tomorrow...


Hello,

Well, Nicholas' face is covered with petechia...we are getting a cbc done today. Now..the bad news is.....his blood culutre is positive from his central line. Meaning something is growing that isn't suppose to be in there! ARG! and will sit down where he is! Oh how I hope it is just a contaminated source and not in his system. He isn't running a temp so it may just be a contaminate. Poor baby...no wonder he is so droopy. He says, "I'm exhausted!" But still I believe he is just recouping from being so sick. He walked a little farther last night without breathing too heavy. Then he climbed a small enbankment up at Kenny's house, sat down for a minute and then wanted to pet the colt!

Kenny had a 50th birthday on Monday! Happy Birthday Kenny! I found a card with a horse on it! Perfect for him! It was cute!

Spencer was really tired yesterday evening. He didn't want to take a bath! "I hate baths!" I think he was just too tired!

Pray for everything! Nicholas counts to come up, his infections to go away, total healing would be nice too. Pray for Spencer too, he has so much to deal with and gets frustrated when he cannot talk about it! Did you see his photo in the Coalfield? Did I mention that yesterday? He was smiling so sweet! He was proud as a pumpkin!

We are thankful that platelet transfusions help,
Donna

Tuesday, May 23, 2006 9:39 AM CDT

Hello,

Nicholas was singing to the top of his lungs last night! He was singing...."We Got The Power In the Name of Jesus!" It was wonderful to hear his little voice! He left it on Sissy Bear's answering machine! I hope she saves it! I was acting it out when he was singing and he got so tickled at me and began giggling at the end......Oh how precious that giggle is.
He also sang to Mamaw! Anything to do to delay going to bed! He had to eat yogurt and wanted ice water and of course his nightly trek back to the bathroom! I'm so thankful he is able to get up and walk around! He is still breathing hard when he exerts himself but hopefully that will get better. His lungs sounded a little bit better last night! He looks pale and has petechia on his face again! It faded last night but looks bad this morning. We will be getting another cbc this week to see where his counts are. He is saying, "I'm so tired!" which isn't like him at all.

Spencer's photo is in the local newpaper!!!! He is decked out in the Mathathon St Judes' T-shirt and showing his goodies! He is smiling from ear to ear!

Pray for good counts and lungs to heal.

Blessings and Bear Hugs,
Donna

Monday, May 22, 2006 11:38 AM CDT

Hello,

I just lost the entire update! ARG!

Ok, I had waited until we got his cbc results and now I'm bummed! I knew they would be low but in my heart I wanted them higher! His HGB is down to 7.6, Platelet are 21k! (YEAH!!) and ANC is 1323, yes very high for a Monday! His white count was normal! Which is actually high for him! Probably where he is fighting something! His lungs sound some better, the upper part anyway! He HAS to get better! His counts HAVE to come up!

He had a good weekend....playing in spurts! Resting or lying down when he couldn't take it any longer! He has complained with his legs hurting but I think it is where he is playing more. I could tell a difference from Saturday til Sunday. He played more and for longer periods of time on Sunday, which is an improvement.

Spencer has already been outside playing this morning! Its warm and sunny and I think it perked Nicholas up when I told him to get outside and play! They love outside!

Ok, I need to get something off my chest! It seems that someone has nothing else to do but make up lies on me! I'm tired of it and if you do not know what you are talking about then please do not spread rumors.......its called LYING! Get real! I know the ones that know me.....know better, so you are only hurting yourself and making everyone else not trust you anymore. You would think that if you have a sick child you wouldn't have time for this! I don't have time for it either so stop! I have enough to worry about without having lies told about me. Thank God I know He knows the truth and He is who I have to answer to. Sorry, that wasn't in the first update! Maybe it was erased so I could get this off me! Now, I've washed my hands of you.........

Thankful that we aren't going for a platelet transfusion today.
Donna

Friday, May 19, 2006 9:16 AM CDT

Hello,

Well, I think I've figured out part of the problem yesterday! Nicholas wasn't droopy.......he was pouting!!!!!!!!! Yes, adjusting to sharing Franzy with Spencer's first day home! I thought that could possibly be what was wrong....and I was right! I noticed a difference when I got home.. he was chirper and playing. He is still coughing up lots of junk and the booger fishing is rendering great catches! He wasn't as nauseated this morning when he woke up! Hopefully, he will feel like playing outside if it warms up today! I hope so!

Another concern is he is begining to cough up some specks of blood. As his counts get lower this weekend, I will probably see more. I should say IF his counts get lower! I want his counts to come up so badly! Please help me pray that they do. I'm desperate! I want his counts UP, UP, UP!

Spencer was just full of energy yesterday evening! I hope he gets outside to play some today too! Maybe that will help unleash his energy! I wish I could bottle all of it up for me or Nicholas! That would be a sight! HA!

Praying for a good weekend!
Blessings and Bear Hugs,
Donna

Thursday, May 18, 2006 8:29 AM CDT

Hello,

GIT-R-DONE! That's the idea! Ha! Nicholas loved Tommy's hat! We found them in the ER when we went for platelets. Nicholas just hugged and hugged on Nanny Betty! He told her..."There's no one nicer than you!" He should run for president! He knows just what to say! Remember Betty in your prayers, she had stints put in her heart but one isn't working and she is having lots of pain. They will have to go in and fix it I guess or she will have to have open heart surgery! She needs prayer!

Nicholas now has a full fledged cold..on top of his lungs already sounding full! He isn't running a temp though...he is breaking out in sweats and really nauseated! He is coughing up a ton of junk! I should say a gallon! He is getting it out though! His coloring is off but that is normal for him. He was really pale to me. Pray his counts will come up to help protect him.

Spencer was up at 6:30 am! Can you believe that? No school and a day to sleep in and he is up! Oh, to be young and innocent! He was a sweetie pie this morning! Sweet hugs and sugars! Mary sent me a photo she took yesterday...I'll try to add it here!

Blessings and Bear Hugs,
Donna (Didn't have to fish for boogers! Nose pouring!)

Wednesday, May 17, 2006 11:54 AM CDT

Hello,

Well, we have had a total of 4 sleepless nights, then on Monday night, he slept! at least until 4:30 am! Then, last night, I didn't hear a peep out of him. Is he better? Not by a long shot. Today, he isn't feeling well at all.....hmmm, the teacher is there too though! Today is his last day! HMMMMMM! No math for a while....wonder if he will feel better this evening! If I was a betting woman, I'd say he will feel wonderful this evening!!! But I know he is still sick....his coloring wasn't the best this morning and he was coughing terrible. He isn't over it yet and is very sore in his back.....don't know why unless its soreness from coughing so hard. He told Ms Phyllis that today was a "Mega bad day!"

He could be sore from laughing too hard last night! OH, I wish I could have captured those precious moments! I went booger fishing and was telling him it was "A BIGGEN!" He got so tickled he was laughing out loud.....I was trying to whisper it because Spencer was asleep but he actually laughed out loud! He said, "Whew Mom! That's the first time I cracked up!" He cannot stand for me to use a q-tip or kleenex in his nose. It was bad or he wouldn't have let me! And I had to make it fun! You can imagine...him giggling and laughing and me trying to fish for them! He tries so hard to blow his nose but most of the air comes out of his trach! Next time you have to blow your nose....thank God that you can!

Spencer, today you graduated from Pre-K. You would make any mother proud to have you for a son! Your face was pure delight and so full of proud sunshine! You were glowing and I'm so proud of you Sweetheart! You have done a wonderful job this year and Mommy and Daddy love you so much. Your smile makes my heart sing! But mostly made my eyes turn into rivers!

Blessings and Bear Hugs,
Booger fishing Soppy Mom!

Monday, May 15, 2006 6:55 AM CDT

Hello,

Nicholas has been the sickest I've seen him a long time.......We had to put him on some oxygen to help ease his breathing some. It sorta helped. He finally came down to 36/min last night! He definietly has pneumonia..in both lungs. They sound horrible. His heart rate is extremely high and he has petechia on his face. I ask for a cbc and his platelets were 22k, I thought they were down to 10k at least.

Spencer is croupy but the antibiotic is helping. His ear ache is gone, just tender now. He was rambunctious this weekend! He also graduates this Wed, May 17th!

Its been a rough 4 nights, so pray for all of us! Pray that Nicholas lungs start healing......

Blessings and Bear Hugs,
Donna

Friday, May 12, 2006 8:29 AM CDT

Hello,

Nicholas is sick! VERY sick...xrays showed no pneumonia but I know he does have it. He is now vomiting and just not well at all. We did begin Synercid last night and hopefully this will help soon. I was up all night long either suctioning or giving him breathing treatments. He hasn't been this ill in a long time. He even ask Franzy for a breathing treatment yesterday and me for some cold medicine..."To get rid of this terrible cold!" I listened to his lungs and he said, "OWW!" He is very sore...

He has been chilling and his head will be really hot to touch but temp isn't registering very high. I know he was about 102 this morning....

Spencer's strep came back negative and his mono test was negative! He sounds really congested though and is now on another round of antibiotics AGAIN! Hopefully, being out of school soon will help too. He graduates on Wednesday, May 17th at 9:30 am! Sniff! Sniff! I cannot believe how fast this year has flown by! I told him he was off from school for a couple of months and he asked me, "Did they know we needed to go to Camp Sunshine and closed it so I wouldn't miss school?" HA! Too funny!

Just pray for all the children, Chelsea going for bmt no. 2, Robbie: his counts have fallen as he developed an antibody to the new marrow! Bless their hearts they were in Cinci for 6 months! Matthew, pray for his bone marrow match! Pray for my babies too.

Blessings and Sleepy Bear Hugs,
Donna

Thursday, May 11, 2006 10:02 AM CDT

Hello,

Nicholas is running a temp, coughing, and sneezing. The sneezing started yesterday evening but he seemed fine! He was very energetic and playing... He will get tuckered out really quickly though. He was complaining his hip is hurting! Normally, this means he has pneumonia!

He is rotten to the core...doing anything to get out of doing his math! Typical boy!

Spencer and I were playing ball! I named him Spencer Babe Ruth! He tried to say it but it came out funny! We ended up laughing so hard! He would get so tickled at me kicking a little soccer ball (hey it works for baseball too!) because every time I'd kick it my shoe would go flying in the air! Nicholas did too! I love to watch them laugh! Sweet music to this Momma Bear's ears!

Pray for all the children and their illnesses........
Blessings and Bear Hugs,
Donna

Tuesday, May 9, 2006 8:04 AM CDT

Hello,

We did a cbc yesterday.....platelets were down to 13k, hgb was 9.5, and anc was 520. I did take him to be transfused as his petechia was all over his face, forehead, and one on his ear again! Hopefully, it will diminish today...he looked at his reflection and said, "Mom, look! Petech!" Too cute! He did break out with 3 hives and I was sort of skittish to take him home.....good excuse to go for ice cream! He was really grumpy...I mean major! He kept asking for food! Yes, it breaks my heart as he isn't suppose to eat at all via mouth. We went for a cone and he said, "MOM!" I thought Oh no! What is he going to ask for now! He said, "I love you!" Hmmmm, maybe it will be ice cream all the time! Yes, I totally melted! Faster than the ice cream! He is so sweet when he eats a cone! He trys so hard to lick it but most of the time cannot get any on his tongue! Then, he will get frustrated; then, tickled...so we have a time! Then imagine, me driving trying to help him eat it! He finally gave up and didn't want anymore!

Spencer has had another temp of 101.1 this weekend and I thought for sure it was the strep but it seems to have disappeared... He went to Papaws and rode Black Jack yesterday evening while we were at the hospital! I think it was fun but he had to get off when Black Jack used the potty! On the driveway! Spencer started gagging! Oh I can still hear Mamaw and Papaw laughing! Tooo funny! They took photos too!

Well that is all the funnies for now! Too much!!!

Keep praying for a cure for FA!
Blessings and Bear Hugs,
Donna

Friday, May 5, 2006 12:17 AM CDT

Hello,

Well what I wrote yesterday just didn't happen! Bummer! His platelets are down to 38k, hgb is 9.9, and anc is 720... He gets another dose of G-CSF this evening to help him through the weekend.

Good News? Mary Bear will become a Mamaw this afternoon! surely by evening anyway! Yes, Ms Becky is having a baby girl today! Mariah Jade..I believe...don't say its gospel or anything! I will post photos as I'm sure Ms Mary will be clicking away!

I did actually have something funny the boys said but I have forgotten it now! Maybe if I ramble it will mosey on back to my pea brain!

Want more good news? I'm ordering a Tote Bag to sell for FA! I'm excited as I love new ideas! new items! new fundraisers! HEY, I can hear the groans from here! Yes, I will be bugging you shortly! Everyone needs a tote bag and YES, Lord Willing, I will be bringing them to camp to sell there too! Just you wait! They will be most helpful there! Just pray that my baby will be able to go to camp! Ohh, he is looking so forward to it. He is getting frustrated when I cannot tell him what will happen every month...ie..major holidays, happenings, so he can put July in perspective! I've started telling him whose birthday it is that month to help him! Whew! I need ideas..He was asking me the other day and I didn't understand what he was saying.....He said, "Does Summer begin? Like Halloween! or something!" I finally realized he was wanting me to tell him holidays, etc!

Oh well, pray for Becky and baby to be fine and dandy! Pray for Chelsea Martin....for the second bmt to take...pray for all the children.

Blessings and Miracles,
Donna

Thursday, May 4, 2006 9:37 AM CDT

Hello,

Guess what I have a belly ache! I guess everytime I write something in here, it just happens to happen! Too funny!!!
Hmmmmmm, that gives me an idea! Nicholas counts are UP!.......ok that means tomorrow it WILL happen! YES! NO? What do you think? Well, here is the truth....Nicholas is very pale and has a yellow tint to him....his liver functions were just tested and they were on the high side of norm...but they were ok. His petechia is more evident this morning....meaning his platelet count has fallen. I think we need a cbc tomorrow to see what his counts really are...going into a weekend is very nerve wrenching with low platelets.... They may want it today..I'll call and see.

Today is the NATIONAL DAY OF PRAYER! One thing to do is join the Prayer Bears and begin a fullfilling, life enriching, spirit moving, heart felt connection to a child or cub that needs YOU to pray and stand in the Gap for them. What better way to strengthen your faith as well? Go to Fill out the Form under "JOIN OUR GROUP"
What better way to help a family get through a crisis than to pray for their needs....

Blessings and Miracles,
Donna

Wednesday, May 3, 2006 11:14 AM CDT

Hello,

Well, it seems that it is getting harder and harder for me to come here and blare my soul to the world. I dont' know how much longer I'll be updating every day...You all do not want to hear my belly aching all the time so .......I if I can't tell something funny then I won't update unless I post about his health issues...maybe just a slump I'm in...just pray for us.

It seems that Nicholas has made C's all year long but I never knew it! I'm furious! How on earth can you come up with a grade without any tests? Without knowing what he can or cannot do! 5 hrs a week just isn't enough to cover all subjects thoroughly. The teacher doesn't think he can add....I KNOW he can! She brought flash cards and he held it and told her the answer! She looked so surprised! He said, "You can see the answer if you hold the card up!" The answers were printed on the back of the card! TOOOOO Funny! So he is grounded! Totally until he "gets math!" Yeah right! "I love you so much Mom!" were the repeated words last night! I asked him if he was just buttering me up and he said, "I said that so you would say..."You are the best child in the world!" HA! Yes, a total Mom Melt Down!

All that After the big talk of Maria! He was sad off and on all day thinking about camp and Maria....He had a flood of questions....about how she got to Heaven, and her body still in the ground......Yeah, tough for Mom to answer questions......too indepth for him to be considering!

Some good news! On Easter sunday, Michelle, Jeff's niece was there and Nicholas embarrassed me and asked her when she was having her baby! She said, "Oh not for 3 or 4 more years at least!" Well, she is 5 weeks! Ha! She couldn't believe that he knew she was expecting! I asked him and he said, "Well she can't be a mother without a baby!" Yes, very profound!

Spencer is a hoot! as usual and ended up in our bed during the night. He would move his head and bump into mine! He just had to touch me all night long. I think he is going through something that is hard to put into words... He helped Nicholas use the bathroom and just patted him and put his arm around his shoulders! He said, "I'll help you Brother!" He is so sweet!

Begging for crumbs, praying for miracles, and grasping at straws....
Donna

Tuesday, May 2, 2006 12:42 AM CDT

Hello,

We had a wonderful evening full of laughs and giggles....and of course, a few tears...
Overall, Nicholas' petechia is disappearing and his face is looking much better. Oh I cannot stand to see him like he was....it hurts to the depths of my soul. I did get a photo but probably will not post it. Now, I'm seeing some dark circles around his eyes but overall he isn't as pale! Getting them rosy red cheeks that are only for a few days post red cell transfusion but hey, we'll take them for however long they last.....

In case you aren't familiar with petechia, its when little blood vessels break in his face or sometimes they will look like red dots, about the size of a head of a stick pin or less, sometimes like purple dots...and really pale around everywhere else. He had petechia, on his cheeks, chin, around his mouth, forehead, and ears this time. They pop out much faster if he coughs or stains himself in any way. That is how I know what his counts are! They are fading but will return IF his counts fall again...Pray they stay up.......and start climbing...
Pray for miracles.......

Want to hear another funny...Spencer has been on a Dr. Suess kick and ever since they celebrated at school with green eggs and ham, he has been wanting green eggs. I made him a sandwich last night and Jeff came home about that time! I told him that Dad would say his eggs were molded! Well, when Dad came thru the door, Nicholas said, "Oh, No! Here he comes!" then grabbed him by the hand and lead him to the table! He said, "We have a surprise! Molded Eggs!" I burst out laughing! Then the look on Jeff's face was priceless as he was clueless to what was going on! Then he couldn't help but laugh! He ask Spencer, "Was that chicken molded?" Spencer laughed and said, "DAAAAAAD!" Oh, the joys of my baby boys!

Praying for Miracles and grasping at straws,
Donna

Monday, May 1, 2006 8:51 AM CDT

Join the Bone Marrow Registry for Matt Pearl

Don't forget to go registry to be a bone marrow donor! Our blood bank in Norton will do the testing. Be sure to tell them you are wanting to be a donor for Bone Marrow! Please...you may be Matthew's match! Join the Bone Marrow Registry for Matt Pearl. Read their story!
See where a drive is near you!!

Well, Saturday morning brought even more petechia on Nicholas face, forehead, and even his ear! I called Home Health and they came for a cbc which showed his platelets down to 10k, exactly what I was guessing! We went for a transfusion that evening but had to wait until they could locate some platelets! Guess where these came from???? Red Cross of NC! Yes, Charlotte, NC! Thanks to donors in NC for donating platelets! Thanks YOU!

We had a wonderful visit from the FA folks from Meadowview, VA. Clinton, Blake, Stephanie, and baby Sarah! Clinton has already had his bmt last year! He is doing wonderfully. The boys had a ball outside playing! They played really well together and will have a wonderful time at Camp Sunshine this year!

Spencer got to feed a baby calf with a bottle! He was thrilled and kept talking about it! He couldn't wait to tell us his surprise when we got home Sat. after the transfusion.

Another funny....Sissy Bear is scared of horses and when we went to the barn to see the new colt, she would close the door when the horse came near...Nicholas got so mad at her. He said, "Sharon! I don't like how you are acting! You can go home!" She laughed and left! It was so funny! Then, last night he was mad at her for something else and was fussing up a storm! He is too funny!

Pray for miracles.......
Donna

Thursday, April 27, 2006 12:50 AM CDT

Join the Bone Marrow Registry for Matt Pearl


Hello,

Please join the bone marrow registry in honor of Matthew Pearl as he is going to transplant soon.

Friends,

I need your help...Please download, print and
post the attached flyer or
email to all you know as this is our last bone
marrow drive for Matt. We are
having drives nationwide in 80 cities May 13th
honoring Mother's Day, birth
and life. Please participate and help us save
lifes! We are going to
transplant ASAP as Matt is in serious failure.

Thanks so very much
Diane Pearl
This could be your last chance to help…

Please Save My Life!!!

Matt Pearl – Age 9
Matt & Alexandra Pearl suffer from Fanconi Anemia, a rare life-threatening blood disorder. Alex had her bone marrow transplant, but there is still no perfect match in any registry for Matt. We have searched for 5 years adding over 80,000 new donors…many lives have been saved…this does work. However, Matt has started to receive blood transfusions to stay alive and is going to transplant ASAP.

YOU COULD BE A MATCH! TESTING IS A MOUTH SWAB, NOT A NEEDLE STICK FOR THE 1ST TIME EVER!
If you are healthy and between age 18 – 60 please attend the:
FREE THANKS MOM! MARROW DONOR DRIVE

Saturday, May 13th 9 a.m. - 4 p.m.

Creve Coeur Fire Station #1 11729 Olive St. Louis, MO

This is part of a nationwide recruitment day of drives in 80 other cities honoring all mothers. See www.marrow.org for other cities

Visit www.alexandmatt.com for updates and how you can make a difference. We desperately need your help…


Another plea..........from a desperate mother!
Please go and get registered......they are using mouth swabs instead of blood work!!!! Great news if you are scared of needles.........

Nicholas is full of pep today and scared Frances silly yesterday! He was pouting at me because I told him we were NOT going to get a platelet transfusion!!! She thought he was sick but I guess I asked for that one! I'm thankful he can pout! I'm also thankful that he is peppy today and full of life since 6:30 am! Yes, he was up early! He is probably wanting to go to the barn to see the new colt!!! Beautiful little filly! White, red, brown, black, and some silver! Gorgeous! Spencer loved it!

Have a blessed registering day!
Donna

Wednesday, April 26, 2006 10:45 AM CDT

Hello,

Well, we have another packed red cell transfusion under our belt! Or in his blood I should say! He didn't perk up last night at all but has today! His temp left too. Thank you all for praying Bronchitis away so far!

This is the last week of Aranesp....and need a miracle. What else do we try? Is there something out there that could possibly work? If you have ANY ideas, please let me know! When do we stop trying? What are we going to do? When do we give up? I don't think I ever will. I will alway continue searching........for a medicine that MAY have a slight chance of getting the platelets and hgb up...
I honestly think everyone else has given up, the drs, etc.

Pray for a miracle! We need the blessing of the Lord to shadow Nicholas. I know he is under His wing anyway but our human side wants our baby to live......I want to hold him longer, hug him, and feel his little arms around my neck and those precious kisses on my cheek. I want to see that sparkle and mischieveous gleam in his eyes for a long long time. Nothing can capture it like he really is! No camera on earth can get all the preciuos qualities into a flat photo. I want to see him pout, laugh, cry, smile, bubble over, and yes I want to hear him quarrelling, sassing, back talking, laughing, scaring, clapping those feet together like only he can. I want to hear his every word, moan, sigh, cry, and laugh. I want to see those little winks and little finger in the air for ok! I want to see that smile when I tell him he can eat ANYTHING! I want my baby to LIVE.

I want Spencer to not worry everytime we leave the house. "Will you come back home tonight Mom?" I don't want to hurt everytime I have to leave him home. I don't want him to worry. I don't want to see the uncertainities in his eyes. I don't want see his puckered lip and tears of frustration in his eyes. I don't want him to worry about Nicholas. I don't want his first words when he gets home every evening to be "How's my brother today?" or "How's Nicholas today?" or "Guess who met the bus Mom? NICHOLAS!" smiling with so much pride.

Yes, we face all this every day..and so much more that I cannot put it into words! Emotional rollercoaster.....no wonder we are exhausted!

Blessings, Mercy, and Miracles,
Donna

Tuesday, April 25, 2006 11:16 AM CDT

Hello,

We are feeling some better! Thank God! I have never had such a headache in all my life! And it still burns and hurts to cough! But we are surviving!

Nicholas has a temp of 100.6d this am. That means he is fighting something bacterial. He doesn't have any energy much either. With a hemaglobin of 7 its no wonder though. We are getting transfused with packed red cells today. Hopefully, this will give him some color and put some pep into him so he can fight off this bug. He keeps clearing his throat and I didn't want him to get this! I knew it would be hard to keep him totally clear though. Hopefully, they won't keep him in the hospital...

Spencer came home yesterday and crashed for a couple of hours. He was so tired! He slept through Nicholas in school! Nicholas would try not to talk loud and shhhh us when he thought we would wake him up! He wanted him to sleep! I knew it would mean a late night and a rough morning this morning though! Of course, I was right! Spencer was tired this morning! I hate having to leave before he does...but as Nicholas says..."Ya gotta do whatcha gotta do!"

Mary got lots of cute photos yesterday!! Hopefully, she will email them to me before too long and I'll post them. They love Ms. Mary! I think she spoils them! Spencer's eyes lit up when he say the cake with chocolate icing that she made yesterday! You could lead him over a cliff with chocolate!

He comes by that honest of course!
Blessings, Miracles, and Peace for the soul,
Donna

Monday, April 24, 2006 12:58 AM CDT

Hello,

Well we have had a very rough weekend! Jeff and I have bronchitis and it really hurts! Spencer has strep AGAIN! I don't think he got over it the first time! We have all been feeling pretty rotten! Nicholas is now running a temp of 100.3d! He will end up in the hospital if it gets any higher! Bless his litte heart! He is sneezing some too. I prayed he wouldn't get this.......

I do have his cbc...platelets 75k, hgb 7.0, and anc is 817. He will have to be transfused this week, especially if he gets sick. We have been on ARANESP for 3 months and did not get a positive response and I'm scared that when we stop, his counts will plummet. Don't know how much it can drop except to completely bottom out.........

Keep praying for Darrell too, he has another bulging disk in his back. Bless their hearts!

Blessings, Miracles, and more Miracles,
Donna

Friday, April 21, 2006 7:30 AM CDT

Hello,

Well, I have bronchitis! Jeff must have had pneumonia! Now, Spencer woke up around 2 am and begin vomiting! So we just had a snorting, snotting, coughing, hacking, sneezing, feverish, sweating, chilling, and vomiting good ole time! This lasted for about two hours! Nah, I'm fine! horribly fine! Love Nicholas' little heart, he slept like a baby through it all. I guess we all need to quarantined until we all get better!

Guess what Nicholas received in the mail? A Spinoza bear! Yes! He was sponsored by Women of Moose from Richmond! He absolutely loved it! So did Spencer. Spinoza helped Spencer's hurt knee get better and helped him take a bath! It is wonderful! Thanks Marci!

We are getting another cbc today. He will probably have to have a red cell transfusion. It just never ends....vicious cycle. He is really pale though but seems to be feeling ok. He is usually forgetful if his hgb gets real low, so far that isn't happening...not in a big way.

Will post results when I can.

Blessings, Mercy, and Miracles
Donna

Thursday, April 20, 2006 12:06 AM CDT

Hello,

I'm currently having a "No Gall Stone Party!" Whooo peee! But now coughing my head off! No surgery SIS! At least until further testing is completed!

Spencer was so sweet last night and puckered up and said, "I hope they don't take it out!" I reassured him and hugged him so tight! He asked Frances if they would put it back in! Tooo funny! Nicholas kept saying, "I'm glad everything is ok with your bladder!" Oh, my little worry warts! I came home and was feeling much better! Much better than Jeff anyway! He was running a fever and couldn't hold his head up! He is stubborn! Now! I know where Spencer gets it from! I thought it was me but I went to the dr.......hmmmmm, lights are flashing! Ha!

Nicholas did get his transfusion this morning. And that was the hardest thing to do was to leave him........I know Frances was there with a hawk eye on him but it wasn't MOMMY! He didn't have a reaction so we are rejoicing!

He will probably need red cells before too long.....Oh is is horrible!

Blessings, Mercy, and Miracles,
Donna

Thursday, April 20, 2006 10:31 AM CDT

Hello,
As some of you know Donna has been having gall bladder
problems. Well, she ended up in ER yesterday eve. They are going to do a scan this morn, probably right now at this moment. I would not be surprised if she isn't in surgery this eve or tom. one. I will let you know.
When we got home last night, Donna went to living room; Spencer came into the kitchen and asked me, "Did it go well?" He was so concerned for his mommy. Was that precious? He even waited until she was out of the room!!
Nicholas is getting platelets right now, too. He just had a transfusion last Wed.!!!!!!!
Please pray for them; Jeff is sick, too.
Love,
Sissy Bear

Wednesday, April 19, 2006 9:50 AM CDT

Hello,

Praise the Lord! Praise the Lord! Uncle Wayne is up walking around this morning after a Quadruple ByPass! Yes he had to have 4 bypasses. Great news from a far country. God is so merciful. Thank you Lord!

Nicholas is getting another cbc today. I changed his dressing last night and it has blistered his little chest. I put a smaller one on and it didn't last through the night! Home Health nurse had to change it! I don't know what we are going to do! Change it every day I guess.
He screamed in pain last night when I tried to clean it! He has bruised terribly all over his left chest....where they put it in. His counts have to be down.

I was awake every hour on the hour last night...for one reason or another. Jeff is feeling horrible with allergies and was up and down. Nicholas crimped his feeding line, water gathered in the tubing and was flomping! Mamaws word for it! Ha! She is so funny. She was keeping him when he was tiny and water gathered in the tubing and that is what she called me and said. I had to go home! It was hilarious! I couldn't figure out what she was talking about! Oh, the mememories of those earlier years!

Spencer is fine! Rotten to the core as usual....

I'll post the counts if I'm not too bummed!

Blessings, Mercy, and Miracles,
Donna

Tuesday, April 18, 2006 7:01 AM CDT

Hello,

CBC results were platelets down to 35k, hgb down to 7.7, and his anc was way down to 245!! Yes, I am bummed! Nicholas seems to feel ok though so we will repeat the labs on Wed. and he will probably need both red cell and platelets....no, I'm not looking forward to either or the possible reactions....UGH! Just thinking of the last one drives a knife in my heart and makes me shutter! Hive on top of hive.....distorted his little face and scared us to pieces. Thank you Lord for helping us that day.

Spencer went back to school today! He said he didn't like to miss school or take breaks! He is too funny! We are still hiding Easter eggs! Not the real ones! Phew! Just he litte plastic ones that weren't suppose to have chocolate in them....yeah right! Thanks Mary! She brought them the cutest baskets just full of what? Yes, chocolate! and lots of other goodies! Thanks Mary they loved them! Plastic eggs with Spiderman and Batman on them! Tooo cute!

Please remember my Uncle Wayne Browning, he had a heart attack yesterday and has to have a triple bypass today. He is in ICU but rested well last night. Please pray for salvation as well as health. I just prayed that God would spare him long enough for him to re-dedicate his life back to God. We love him so much and he has always been there for us.

Blessings, Mercy, and Miracles,
Donna

Monday, April 17, 2006 8:36 AM CDT

Hello,

We had a wonderful Easter! The only problem was trying to keep a sweaty little Bear's dressing on! We are suppose to change it weekly but we have already changed it 4 or 5 times! He is also getting a reaction to the adhesives! Here we go again! His arms still haven't completely healed from the PICC line dressings........ I keep trying different ones.....either they aren't sticky enough to stay on or they are too sticky and break him out.

They had a wonderful egg coloring, egg hunting, egg hiding, egg stealing out of Michelle's bucket time! It was hilarious! They loved it! Again Spencer was in a "I don't want my picture taken AGAIN mode!" I sneaked in a few though!!

Home health nurse said that Nicholas sounds really junky and breathing a little fast! We are getting a cbc today too. Will post when we have the results....later!

Stay Blessed!
Pray hard for miracles,
Donna

Friday, April 14, 2006 7:36 AM CDT

Hello,

Well, its great to be back home and we are grateful for all the prayers that brought us safely back! Yes, we did have a rough time but Nicholas being the little troooper that he is, is now feeling much better..

He did get a central line put in and we are so thankful they were able to put it in. PICC lines will be no more! His little veins have been exhausted. He was in tremendous pain while they are trying to put in the PICC line in his left arm and had difficulty breathing...I thought he was having a heart attack! It was scary. It even bruised along the route where the line went in! Up his arm and across his shoulder! Bruised where the guide wire poked his neck! He could even feel as they flushed the line! Definitely something wrong! Yes, he was growling and showed a bear face when the nurse said, "We so sorry it hurt you Nicholas." Her eyes got big as saucers when Nicholas said, "AND it was all YOUR fault!" I have never heard him ever say anything....it did hurt! By the time we left, he was much better though. He even had them crying! Dr. Patel was very sympathetic and you could tell he was sorry it didn't work...the mickey button dr sure could take some lessons from him!

The mickey button did have another hole in the balloon! This one lasted one month and we fought if for a couple of weeks! so 6 weeks! Yes, I proved the dr wrong AGAIN! Oh, he makes me so mad!

Platelet reaction was total horror! I have never seen such a violent reaction and I never hope to see another one! Details are just too gory! He did begin vomiting and had to be put on oxygen. Hives upon hives......millions of them....He did not like that donor! The platelet transfusion that he received actually came from Denver CO! Yes! Thanks to the donor who donated on April 7th!!! IN DENVER, CO!!! We are indepted to your generosity! SEEEEE, go donate! You never know who OR where your platelets will end up or in which precious child they will help! God never ceases to amaze me! Thank you Lord for all you have done and are going to do!!!

Posters? Yes, we have raised over $1000 for FARF!!! Dr. Harris also received an autographed poster from Nicholas and I know it melted his heart. Nicholas had written "I love you Doc!" and signed Nicholas on it! It will be framed and put up in his house! Precious!

Also we met a young lady with TAR syndrome named Meg! Meg, it was a pleasure meeting you and I'm sorry you missed meeting Nicholas! You will make a wonderful Child Life Specialist!

Praying for the children still in the hospital!
Easter Blessings and wonder big ole glad to be home Bear Hugs,
Donna

Wednesday, April 12, 2006 10:19 PM CDT

Praise the Lord! Nicholas has come through another surgery; he has a central line now. I just talked to him!!! I feel so much better. As a matter of fact, I had to read a story to him and would have read more, but his mom said, "it is bedtime." He wants me to come to his house tomorrow eve and read more stories. You just don't know how good it was to hear his voice!!!! I would have read all night if that is what he wanted.
By the way Kim,I relayed your message and Nicholas says for you to be quiet!!!
Thanks for all the prayers and concern. God has answered again!!
Love,
Sissy Bear

Wednesday, April 12, 2006 4:14 PM CDT

Just talked to Donna.
Platelet transfusion went well today. One prayer answered. PTL
Nicholas is in same-day surgery waiting until they can get to him. They will put the central line in within the next two hours. Ring those prayer bells.
ASA I hear something I will update.
Sissy Bear

Tuesday, April 11, 2006 6:18 PM CDT

My heart is so heavy as I write this.
Nicholas has not had a good day. They tried to put a picc line in, but the vein has shrunk---I believe that is what Donna said. They tried the other arm where it was the first time, but that vein has branched out into smaller ones which are too small. This was very painful for Nicholas; he was screaming and crying telling them it was too long. The Dr. was even crying. They can inject through this line, but cannot draw blood. They said they were sorry it hurt; Nicholas, little fighter, told them it was all their fault!!! I can just see him now.
They began a platelet transfusion, but Nicholas had a major reaction---the worst ever. He was beet red down to his chest, covered with hives. They had to give him oxygen.
They are going to try giving platelets in the morning. He will have to have platelets, because they are going to put in a central line(directly into an artery in chest). They said there might be a problem with scar tissue. If there is, I don't know what they will do.
Please pray for Nicholas. Please pray for Donna and Jeff.
Don't forget little Spencer; he took a diarrhea during the night. I am sure he senses things aren't going well. Besides, he is all ears and understands way too much.
Please get those pray chains going.
May God bless you.
Love,
Sissy Bear

Monday, April 10, 2006 10:51 AM CDT

Hello!
We are starting the week out right!!!!!
Nicholas has pulled out his picc line! Yes, you read it right. They have to go to Cinn.; they will take care of that and the GJ tube, too, since the mickey button is loose. Donna knew they would have to go soon, but not this soon. Please rem. them in your prayers.
Spencer is going with them, too.
They may be on their way by now. I don't know details; I don't know when they will be back, but if it is more than 2 days, I'll let you know.
Thanks for all the prayers, cards, gifts, and calls. They all are so uplifting; it lets Donna know someone is there and cares.
Thanks from the bottom of my heart for helping my little sis through this.
Love,
Sissy Bear

Friday, April 7, 2006 8:14 AM CDT

Want An Autographed Poster?
Click on the link and bid today! Most of the proceeds go to FARF! Tax Deductible Donation! This is the LAST POSTER! I don't have any more at the moment! If they do a drive this quarter I may have some then. LAST CHANCE OFFER!!!!

Hello,

Be sure to bid on this last poster! The last date is Sunday!

Nicholas and Spencer had a great time with Mary yesterday! I guess a change is good sometimes..I was thinking this morning that I had so much to be thankful for. Spencer had the flu, Nicholas did not get it! Spencer had strep, Nicholas did not get it! That in itself is a miracle! We do not go anywhere in a crowded area.....except for Spencer! Bless his little heart! He is catching everything at school! But hopefully, that will not be for too much longer! May 19th is the last day! I know Chris has the days, hours, minutes, and seconds down to the last day!!! Ha! Sharon has too! We NEVER got out that early! I cannot ever remember getting out in May! It was always way up in June! By the way, our 25th class reunion is coming up this year! Whoo Hooo! Wow!

Getting back to my train of thought! Nicholas and crowds, going anywhere! We just don't! Going to church was a risk but staying housed up with us could be a risk too! He did get out of the house last Sunday! It was so pretty out! He picked flowers for Mamaw Boggs as soon as his feet touched the ground! He always does that. Brings me little flowers all the time. Spencer does too sometimes but Nicholas does it every time! Super sweet boys! How could a human being love so much? Sometimes it feels like it will burst! I just love my babies!

Stay Blessed and help pray for miracles,
Donna

Thursday, April 6, 2006 12:18 AM CDT

Want An Autographed Poster?
Click on the link and bid today! Most of the proceeds go to FARF! Tax Deductible Donation! This is the LAST POSTER! I don't have any more at the moment! If they do a drive this quarter I may have some then. LAST CHANCE OFFER!!!!


Hello,

Waiting for cbc results before I updated! His platelets are 48,000 and Hgb-9.6. That is all I have right now! He was in a great mood last night! He was fiesty! He was energic! He was playing! I could tell a big difference in him.... Oh, do I dare hope the Aranesp is working! Oh I pray it is..I really do not want to try the Androgel again but you will do anything if you are desperate! And we are just that! DESPERATE! My heart is continually on my knees crying out for miracles, healing, and life. The continual moans and groans of the soul and heart can only be heard and understood by Jesus. He hears my silent cries. He knows our hearts desires. He knows we love our babies. He knows we are depending on Him.

Miracles and blessings,
Donna

Wednesday, April 5, 2006 8:08 AM CDT

Want An Autographed Poster?
Click on the link and bid today! Most of the proceeds go to FARF! Tax Deductible Donation! This is the LAST POSTER! I don't have any more at the moment! If they do a drive this quarter I may have some then. LAST CHANCE OFFER!!!!

Hello,

No new developments on our end except for that stinking mic-key button!!!!! We will have to get it changed! I'll try to keep it as long as possible but who knows how long it will last like this.

I think Papaw came up with a perfect name for Spencer! He asked him last night if he had ever heard of a TWISTY Bear! Yes, it IS perfect for him! I love that little twisty bear though! He is rotten!

Nicholas took Mamaw to the bedroom for some private bear tales! Tooo funny! He likes to hog her that is for sure! and will shhhhhhush her when she talks too loud! He doesn't want Spencer to know what they are doing. It is funny!

You know its when Nicholas is sort of ok that gives me too much time to think. Its hard to be truly happy when your child is slowly dying. I have to be happy to keep him happy and Spencer is dealing with a heavy load too. He is all ears. Nicholas is a happy little lark most of the time. He was talking about Camp Sunshine and was sad...he told Frances that he was sad because of Maria! Did he say this to me? NOT! He told me he was sad because I had to change his trach! I did change it Sunday and he told me that he was terrified! It went in smoothly and he was all smiles then! I did talk to him about Maria and told him that Maria would not want him to be sad but HAPPY! He didn't even ask me any questions.... but I think he already knows it all anyway! Spencer tells me he knows everything all the time! Tooo funny! I am thankful that God has given us this time with Nicholas. To see a pure soul full of love, happiness, and he has touch my soul beyond words. A perfect gift from God that just radiates love. I just pray for more time with him.

Praying for miracles, acceptance, and grace,
Donna

Tuesday, April 4, 2006 6:59 AM CDT

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Click on the link and bid today! Most of the proceeds go to FARF! Tax Deductible Donation!


Hello,

Spencer had a half day yesterday but came home a little droopy! He didn't eat lunch and then went to sleep and slept all evening! He woke up and ate and then was forever going to sleep! Then was awake at 3 am! Fussy and was hungry! Eating jello at 4 am this morning! He woke up Nicholas too! We should have all gotten up! Jeff is suffering from allergies and hadn't slept much anyway! I'm sure we will all be in fine form today!

Nicholas is clearing his throat amost continuously! I think he is getting strep but so far he hasn't developed a fever. His coloring isn't the best but overall he is doing ok, except for the grumpies! Grumpy Bear! He is now on "Read me a story...."to Mary and Marci or anyone that calls! He told Marci she had to read him 5 books next time and that was last night! I don't know how many it will be tonight! If you call and do not know a bear tale then be prepared to read a book! Jeff says he is like a teenager, grabbing the phone and talking all the time! He has also been answering out of area calls! I'm going to have to ban him from the phone!

Jeff and Spencer were talking Sunday about how he was growing up! Spencer said, "Dad, it won't be long until you are my children's grandpa!" Jeff said, "Whoa! Wait a minute! You can stop right there!" Too funny!

Pray for all the FAmilies. Pray for the children that are traveling through this life but enduring tremendous amounts of pain and suffering. Pray for patience, understanding, acceptance, endurance, strength, and wisdom.

Pray for miracles,
Donna

Monday, April 3, 2006 7:17 AM CDT

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Click on the link and bid today! All proceeds go to FARF! Tax Deductible Donation!


Hello,

Ok. I'm so surprised! I knew I loved my baby but I didn't know that you all loved him that much too! What a wonderful idea Ms. Lynn Worley! Congratulations to Busykymom and Singersrus for your winning bids on the posters! Thank you from the depths of my heart! If you will send me a photo of you and the poster, I will put it up here on the site! I have relisted another one! If they start the blood drives this quarter, I may have some more to put up for auction but this is the last blood drive that will be going on in his honor. They will get a new poster child for the 3rd quarter! Hopefully, someone will get me some!

Ok now on to the more important update on the little Boggs Bears! Spencer did have strep throat! According to Nicholas he has "A strepped throat!" That was too funny! Spencer responded really quick to the Omnicef but guess what? HIVES! He broke out with a few on Fri evening! Benedryl did the trick and put him to sleep real early too! Then guess who was up Bright eyed and bushy tailed on Saturday morning! I mean like 5:30ish on Sat morn! Guess who wasn't bright eyed!!!!? He wanted me UP! Guess who had a back in major slipping mode? Guess who was feeling so much better and was rotten all day! Yep, I'm happy he is feeling better! He was a totally different child on Sat and Sun! He overheard me saying that chicken pox was going around at school and didn't want to go this morning! He doesn't forget anything!

Nicholas has had a pretty good weekend. He is so pale though and it is worrying me! We walked for a short distance and he was tuckered out! He turned so pale and just didn't do anything for a while. I can see a major difference in him. He is very tired and a little grumpy bear! He sounds congested but isn't running a temp. I'm scared he will get strep too! I think we are going back and trying the Androgel again. I'm not looking forward to that but hopefully he will respond this time. Yes, I'm still wanting a miracle! He did have burst of energy and played ball outside with Sissy Bear and Candy. He and Spencer went to the barn and I took photos of them peeking out the top! You can barely see them but they are still cute!

Praying for peace for the ones that have lost loved ones, miracles and blessings,
Donna

Friday, March 31, 2006 7:34 AM CST

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Click on the link and bid today! All proceeds go to FARF! Tax Deductible Donation! Closes on TOMORROW!!!
Hello,

We did get platelets last night for Nicholas. He seems to be doing ok! He did have 3 hives at the end of the transfusion.

Spencer is running high temp and I believe he has strep throat. We are going to dr this morning!

Keep praying for miracles!
Donna

Thursday, March 30, 2006 7:10 AM CST

** Transfusion! Platelets! Coughing up some blood and bleeding around mic-key button. He has also pulled his line a couple of times this week and I think that has irritated it. The button is now loose too! It may last a week, maybe not!
Want An Autographed Poster?
Click on the link and bid today! All proceeds go to FARF! Tax Deductible Donation! Closes on Saturday!


Hello,

Good news on Joyal Wayne, all is well with his heart! Prais the LORD!

Nicholas had a cbc yesterday and his plalets were down to 27, hgb already down to 9.9, and anc was 645! I couldn't believe they were already this low and he was just transfused a week ago. I'm bummed to say the least! But, he seems to be ok except he was playing on a rocking chair and slipped out of it and it hit him in the back of the head. It was just a small bump or I guess I would have panicked! I also noticed his face is broken out! I'm not sure what is going on there! I'll have to keep a watch on him and see what develops.

Spencer helped Dad burn off the garden yesterday evening. He thought he was something in his "mud boots!" That is what he named them! They look like Dad's boots! He was all smiles but didn't sleep worth a hoot last night! He was crying out every couple of hours and I was a yo-yo last night! Now, my eyes are!!!

Miracles, Healing, and Blessings,
Donna

Tuesday, March 28, 2006 8:12 AM CST

***Whoooo Hooooo! Spencer won! the Mathathon contest! He brought in the most donations! And won the 50 video game plug in!**** Thanks to all of you that donated! I can tell he is beaming from ear to ear!



Missed your chance on the poster? Here is another one to bid on!

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and there's 6 more hours left on the magnets!
Want A Bone Marrow Awareness Auto Magnet?


Nicholas is still doing pretty good! He did well in school last night! Ms Phyllis was pleased. He is just a little on the "Instant Mad" side if things do not go his way! Last night Spencer answered the phone when Sissy Bear called and broke Nicholas' heart! He did not like it one bit! I had to call her back and let him talk to her! He was wanting them to come up and play hide n seek!

Spencer is still doing great! I think the antibacterial hand wash is breaking out his hands! They look scalded! He has always been sensitive to some dyes and I guess there is nothing like soap and water! he is still working the Mathathon! on 2nd grade level now! He is just too smart! I love that little booger though! I did tell him that Maria was now in Heaven. He did fine with it. He will probably ask questions when he has thought about it for a day or two.

Jeff told Nicholas Sunday and Nicholas just dropped his head. He thinks totally different than we do! He knows she is fine now! He knows she is out of pain and not suffering! He is smarter than we are! We are suppose to rejoice when a loved one goes to Heaven and morn when there is a birth! When will we ever get it right?

Remember Joyel Wayne, he has a blockage in the lower part of his heart and goes for a catherization on Wednesday, tomorrow! He has been having some chest pain and all the ekgs were showing up ok! Sharon finally got an appointment in Kingsport and they found it! Thank God she did.

Maria will be laid to rest today at 11 am. Peace and rest at last.

Miracles and Blessings,
Donna

Monday, March 27, 2006 9:48 AM CST

Hello,

Missed your chance on the poster? Here is another one to bid on!

Want An Autographed Poster?
and there's one more day on the magnets!

Want A Bone Marrow Awareness Auto Magnet?

Nicholas is a little grumpy today! He got up too early I guess! He was running a low grade temp last night and sounds like he is getting congested. Laryngitis or something? Who knows! Its always something.

We had a big birthday dinner yesterday! It was for Joel, Wesley, Eric, and Stephanie! Yes all of them in March! Whoo hooo! It was sooooo good! Since it was too cold and snowy, Nicholas had to stay home but Spencer had a ball! He has been a pure ham all weekend! They have both been hilarious!

Please remember Maria's family in your prayers. The wake is tonight from 6-9 pm and burial tomorrow at 11 am.
Remember all the chilren with FA and their families. We are all at different stages but all on the same track! Some have more heavier loads, some have less, but all the engines are still pulling along the tracks toward Home. Praying for the empty cars. Praying for the families just aimlessly mosing along without direction, without hope, without a cure on the horizon, trying every side track in hopes that it will lead to a miracle.

Blessings and Miracles,
Donna

Saturday, March 25, 2006 4:37 PM CST

Hello,

I must say I was totally shocked at what the other poster went for but I truly thank you from the depths of my heart for bidding. If you missed out on that poster, I do have another one and here is the link and the bidding has just started! Please keep trying! Thanks to Kathy for your bid and your company matching bid! That is totally awesome!

Want An Autographed Poster?


Maria has passed from this earth and taken her heavenly flight. I did get to tell her I loved her via the phone. I don't know if she heard me but at least I did get to tell her that Nicholas and Spencer sent hugs and kisses too. I did try to make it there before she passed away but hardly got started when I called them again.

Rest in peace Sweet Little Ms Fireball! You were an inspiration to many FA children. Your spunk and desire for life was an example for us all. I thank God I was able to tell her all of this while she was living!

Speak to your loved ones and let them know you love them! Encourage them!

Blessings and Bear Hugs,
Donna

Friday, March 24, 2006 7:40 AM CST

**Now, Nicholas and Frances were talking about Camp Sunshine and he told her that we were praying for Maria but he couldn't think of her name. He made Frances call me and asked what her name was! Maria isn't responding now, please pray for her and her family....


Want An Autographed Poster?
Today is the last day to bid on the poster!!!!! Be sure to check it out today!!!

Nicholas finally got his little red cheeks last night!!! Yes, I thought he was feverish! It is never ending! I'm forever checking him and Spencer! I guess my instincts were off the other night! He is congested though! I had to give him extra breathing treatments yesterday.

Yesterday, Spencer wore his little brown boots and his legs had red places on them! I asked if they hurt his feet!!!! He said, "Mom, I ignore the hurt!" Oh man! I immediately hid his brown boots! He will have to wear his black ones! I showed them to him and he asked if they were his! I said, "Yes! These are the ones I got you for Christmas!" He said, "GREAT!" Today, they had character dress up day! He is going as Scooby Doo! He looks so cute in it! We tried on "Clifford" but it was too small! He is growing straight up! Everything is too big around the waist and too short in the legs! I'll have to fatten him up some! He had nightmares last night and I was up and down with him until 2 am, then at 4 am, Nicholas started coughing! Needless to say, I'm so tired and sleepy today.

Pray for Maria, she is now on hospice. Pray for all the ones takin treatmenst of some type. Pray for all of us that need a major miracle for our children. It never leaves our hearts or minds. We are continually searching for meds, ideas, however remote and in constant prayer.

Blessings and Miracles,
Donna

Thursday, March 23, 2006 7:17 AM CST

Hello,

Nicholas did get platelets and red cells! Thanks to the donors....he received 0- in each!!!! He did well and did not have one single hive! Thanks for praying!

His xray was ok. PTL! He left the hospital singing and acting crazy! At 11:30 pm! The nurses were cracking up! Nicholas was exhausted though! He slept through the night and I only heard him turn over once!

Spencer was happy to see Mom this morning! He jumped in my bed and had a big smile! "Good morning Sunshine!" He just patted me and hugged me! Sweet little kisses to make my day!

Mamaw's report was final as an infection..no major problems! Thank you Lord for that miracle!

Please continue praying for a miracle for Nicholas,
Donna

Wednesday, March 22, 2006 9:22 AM CST

**Platelets are 10k, hgb is 7.6. Yes we are going for both tx! and a chest xray. He is really pale but hopefull will be rosy red cheeked by tonight! Pray it doesn't take forever!
B&BH!

Happy Bidding!

Want A Bone Marrow Awareness Auto Magnet? Please bid and donate to FARF! Thanks.


Want An Autographed Poster?Click on the link and bid on Nicholas' autographed poster! It will be a tax deductible donation and all the proceeds go to FARF! Please help find a cure! BE A PART OF TEAM NICHOLAS! It's over $100.00! Wow! Nicholas sign it last night! He has no thumbs but did a wonderful job and actually made some curly ques on his letters! He is so funny!

Yes, he was feeling fiesty last night! Acutally, felt lots better than I expected! He ran a low grade temp yesterday and was droopy for the most part of the day. Today, the nurse said his lungs sound cruddy and he is coughing up some bloody tinged sputem. She thinks he needs an xray. I'm sure we will go for transfusions today......both red cell and platelets. Did you donate any blood? Did you donate platelets? I pray someone did.

Please go donate where ever you live! Someone is getting chemo in your area and I'm sure will need that blood! or platelets! They have never thrown away any platelets that were donated! Please make an appt today. Tell them Nicholas sent you! Ok, inspired you!

Spencer is ok too! He and Nicholas played and played yesterday evening.

Will post the counts when they are back.......
Blessings and Miracles,
Donna

Tuesday, March 21, 2006 7:54 AM CST

Want An Autographed Poster?Click on the link and bid on Nicholas' autographed poster! It will be a tax deductible donation and all the proceeds go to FARF! Please help find a cure! BE A PART OF TEAM NICHOLAS! It's up to $96.00! Wow!

Hello,

Nicholas is very nauseated. He has been since Sunday. I'm not sure what is causing it but my gut feeling is that he is getting sick again. I told Robin that his culture would probably be positive again. Yes, I've just got a feeling something is going to happen. I hate these feelings. I guess I should thank God for the premonition. It definitely makes me more aware of every little symptom! He is running a little temp this morning but that may be due to low hgb! We are going to repeat labs on Wednesday, unless he starts bleeding somewhere. I'm on pins and needles with him jumping around and playing! I finally said, "Who wants to work on the computer?" Well, of course Spencer wanted to work the Mathathon again! He has one of the addition grids memorized! Nicholas wanted the phone! He was in Bear Tale Heaven! Sissy Bear AND Mamaw!

Guess what!? Frances and Spencer were looking out the window at a snow storm! School dismissed early! It looked like a blizzard! Spencer asked, "Is it Christmas?" Frances said, "No, its the first day of Spring!" Spencer said, "Someone's got it mixed up! Don't they?" Ha! Well, it melted off and is now raining! School was on regular schedule this morning! Tooo bad Sissy Bear!

Remember all the families that are making major decisions. Pray for the Lord's guidance and His sweet touch.

Praying for cures and miracles,
Donna

Monday, March 20, 2006 7:56 AM CST

**Platelets are 12k!, hgb-8.1, and anc 960!

Hello,

Want An Autographed Poster? Click on the link and bid on Nicholas' autographed poster! It will be a tax deductible donation and all the proceeds go to FARF! Please help find a cure! BE A PART OF TEAM NICHOLAS!

Thank you for all the contributions to Spencer.........drum roll.........for a grand total of $605.00!!! Thank you for helping us give back for the services Nicholas received! May God richly bless you! They LOVE that cd! It has some games on it too but they don't do the games, they are doing the math!!!! Spencer went on to the 1st grade! He remembers the answers though! Nicholas was doing a little grid and Spencer remembered the number sequence! TOOO sharp! He is so cute! He will put an answer in the wrong place just for fun! And then has a little sneaky grin on his face and will just giggle when I say something! He is rotten!

Nicholas cbc results will be sometime today! I dreamed his platelets were down to 6k! He is very pale and has lots of petechia all over his face. His energy level is down but we had a wonderful weekend! Mommy really needed it! I love being at home with my babies! Got lots of sweet hugs and kisses! Ummm, mmmmm, mnmmm! Wonderful giggles and sparkling eyes!

Pray for Charisse, Maria, Ty, Jordan, Will from Md, Nc, and Ky, Joanne, and Mamaw Bear! She is recovering slowly!

Pray for cures, miracles, and thank God for His blessings,
Donna

Friday, March 17, 2006 7:43 AM CST

**Please donate online for St. Judes...today is the last day....Thanks to all who have contributed!

Hello,

Happy St. Patricks Day! Spencer got it in his head that he was going to be pinched! I had told him about wearing green sometime last year! Last night, he decided he didn't want to go to school today! I mean he was so serious! I explained that he wouldn't get pinched if he wore green! Then I told him he would have to remind me to wear green too! That made him feel better! He didn't have any problems this morning and didn't even mention it! I told him I'd go and eat lunch with him!

He LOVES the Mathathon cd! He went back on it last night under a different name and on the 1st grade level! He did well! I'll just let him continue up the grades if he wants too! He is so sweet! He and Nicholas took turns working on it last night!

Nicholas' cbc came back with platelets down to 32k, hgb 8.6, and anc 1448. No, it isn't really doing better, just been a week since he was transfused! Oh how I wished his counts would be higher on Monday! That would be wonderful!

Pray that his counts will go in the opposite direction...UP! Pray he will continue to tolerate the transfusion....Pray the doctors get some divine guidance and come up with another medicine to try......better yet...Pray for a miracle.

Happy Birthday to Joanne: http://coolgal17787.bravejournal.com
and Will: nc/will

Miracles for all,
Donna

Thursday, March 16, 2006 10:18 AM CST

Hello,

The boys are rotten! Spencer made it his day to pester Nicholas in every which way possible! Frances said he was a wild child! I'm so happy he is feeling better! He was so full of himself yesterday evening! I put in the St. Judes Mathathon cd and he worked every problem in no time flat! Only a few wrong and he did fine after I showed him what he was doing....it was on a Kindergarten level! He did super! He was so funny! It plays music and he would sit there and dance while answering the questions! Hmmmm, maybe that contributed to his energy! He didn't settle down until after midnight last night but that was due to a little nap too late in the evening! Then, Nicholas did the Mathathon too! It was on 2nd grade level and he is working on it today too! He loved it too! They are just the most precious boys on earth!

Do you like that song playing? Turn up the volume! Thanks Ms Marci and family for the Song of Love! www.songsoflove.com It is wonderful!

Mamaw is home! Yes, she came home last night! Still weak but seems to be on the mend. Praise the Lord!

Nicholas informed Frances today that he was "Going home!" He said, "Mom will be so sad and cry." Where does he get this from? They were laughing and playing and out of the blue he says these things! I'm sure the good Lord is tired of hearing my pleas for a miracle but I just have to keep asking, begging, pleading, crying, and praying. Yes, I'm still being worked on! He's the potter and I'm the clay. Molding me and making me what I ought to be. I'm still in the rough! He has a lot of work to do! He gave the disciples power over the sickness and diseases....surely there is someone somewhere that still has that power, that gift to heal, that believes...... I'm not talking about all these fake healers in the land that I wouldn't take my dog to! I'm talking about God fearing, faith believing, spirit filled, bought by the Lamb prayer warriors, bible believing, that worships a true and living God! That has the love of God in their hearts and the GIFT of healing in their hands.. It is a gift! If you have that gift, please help us pray.

Healing and Miracles,
Donna

Wednesday, March 15, 2006 9:22 AM CST

Hello,

First, Praise God for "no cancer, tumors, or polyps" report. Second, Mamaw does have some irritation in her colon..maybe colitis, crohns, or a virus. They did biopsy the area and will know those results next week. She has lost lots of fluids and now her electrolytes are messed up, which caused confusion and a just about caused Sissy Bear to have a heart attack! They had to give her potassium and she was much better this morning! I'm much happier!

Now, the main bears are on the mend! Spencer is feeling much better, no major temps yesterday but now is real congested and coughing. Nicholas seems to be ok.......coloring isn't the greatest!

Please support Spencer by this Friday with the St Judes Mathathon...send them to: 11824 Lyons Fork Road, Coeburn, VA 24230.........Thanks! Or email me with a pledge if you cannot get it in the mail......I would appreciate it!

Lord, thank you for your miracle this morning. We are like little birds with our mouth wide open waiting for the morsels! Hmmmm, maybe I need to close my mouth and pray harder!
Donna

Tuesday, March 14, 2006 7:22 AM CST

**Pray hard, Mamaw is suffering terribly. I cannot stand to see her like this! She is so weak and trembling. Her test is tomorrow! Pray for all of us!
Spencer is feeling some better and eating...Nicholas now has diarrhea. probably the medicine!
Thanks for praying........


Hello,

Well when it rains at our house, it floods! No Marci, I know it isn't really flooding but trouble is........

Spencer does had the full blown flu....now cannot keep anything down but liquids......high fever this morning around 330. Please pray that he feels better soon. Oh, it breaks my heart to see him this sick!

Now on to Mamaw! Mamaw is in the hospital with severe abdominal pain. The ct scan showed that she has gall stones and diverticulitis. They are doing a colonoscopy either today or tomorrow. Please, please pray for her.

Nicholas so far is doing pretty good. No signs of flu yet. He was in school yesterday and was suppose to write a sentence about a judge. He said, "The judge is the boss!" Ms Phyllis and I were talking and she looked back at Nicholas paper and he had written...."Nicholas is the boss!" Eyes sparkling, tummy jiggling, and laughing so sweet, he knew he had done something cute! Ms Phyllis burst out laughing! He is something else!

I know God has a plan. I have to trust and turn it all over to him.
God Knows,
Donna

**If you haven't donated to Spencer for St. Judes, please do so by Friday! Last day is 3/17/06. Thanks to all who have donated! Click on the link above and check it out!

Monday, March 13, 2006 7:07 AM CST

Good Moring,

We actually had a good weekend for the most part. Then, on Sunday, Spencer was really droopy with fever and had a rash on his chest and back. His temp went to 103.4 early this morning and we are going to dr after while. I think it may be strep. He has only complained with a headache.

Nicholas' face flushed up last night too! I just hope and pray it isn't too serious for either of them! Just pray that whatever it is, we will get the correct diagnosis....
It definitely isn't an antibiotic reaction!

Blessings and miracles,
Donna

Friday, March 10, 2006 8:59 AM CST

Hello,

I'm sorry to say that last night was so stressful!!!! Leaving me totally drained and washed out! BUT yes, I'm fine! Nicholas' transfusion went wonderful! Nurse Cindy was there and hooked us up really quickly and the transfusion was just about over with when Nicholas made a funny sound. I jumped up and knew he was having one of those bad gas spells. I put the extension tube on him to vent but nothing would come out that g-j tube! ARG! He ended up throwing up, face flushing, blood pressure and temp shot up, and scared me to pieces..... but no hives!
He was acting nauseated on the way to the hospital like he has fluid on his ears. He would gag when we went over the mountain and he has been sick this morning too. But he did get his platelets on board! Thank God for the person that donated O+ Single Donor Platelets on 3/06/06. You are a real jewel! Thank you!

Spencer has more sponsors!!!! Thank you all! That was so exciting to check this morning!!!!!! I hope he wins the BIGGEST FUNDRAISER for St JUDES!!!! We went there, we know so many poeple that have gone there, and now do not have leukemia anymore! Praise The Lord!!
If you want to sponsor him, please let me know your pledge if you do not want to give online......THANKS!

Pray for Maria, she is in lots of pain. Pray for all the children that are suffering with all these different types of cancer! We now have 193 cubs in the Prayer Bears! And that is just the ones under 13 years old!!!!!! Please join and help pray for these children and families. Click on the link above and fill out the JOIN OUR GROUP information. God will Bless you!

Lord, we still need miracles but do thank you for the blessings we have each day.
Donna

Thursday, March 9, 2006 8:28 AM CST

Hello,

Well, his cbc is as follows:
Platelets are 13k,
Hematocrit 25.8,
Hemoglobin 9.2,
and ANC is 1620

We will be transfused sometime this evening with platelets.......and that, in turn causes a temporary drop in his Hemoglobin....

I was so in hopes of his counts going back up! Maybe next time!

Spencer went to the Library on a field trip and then to MacDonalds to eat afterwards! I just didn't feel like staying! I now have a terrible cold...

Thank you Lord for your Blessings on me and for the miracles of every day,
Donna

Wednesday, March 8, 2006 8:45 AM CST

Hello,

Spencer received his ST Judes Mathathon package yesterday! This is the first time the pre-k has ever participated! Please donate in Spencer honor! IF you want to donate online, please follow the link above. Coeburn Primary is the school and Spencer Boggs is the one you want to sponsor!!!!!! Please help! This is our chance to give back to St Judes! Nicholas was first diagnosed and we were there for services for about a year! It is INCREDIBLE! God Bless YOU!

Now on to my other celebrity! He is rotten! I think the Tobi nebs are making him hyper! Last night again, he was still up and playing at mid-night! No wonder I have an awful headache! Right after the treatment, he was singing to the top of his lungs! Now we were all in bed, lights off, and here he was.....singing! I said, "Nicholas, quieten down and go to sleep!" He said, "I was singing!" Me: "Ok, What were you singing?" Not really breathing good and having to take a breath between each word and sometimes each syllable, he sang to the top of his lungs and I realized what it was......."Tha nk you Lo rd, for your Bless ings on me!" Shut me up proper! Oh, what a jewel! What a pure joy! Here I am....feeling like a snake having to look up to see dust and here he is the one that has to go through all of this medical stuff and he is singing Praises to the LORD! It should be so easy to Thank the LOrd for His blessings.......but the Devil definitely doesn't want us doing that!!!! He wants us to look at all the cons! I'm putting my blinders back on! Not looking at the bad! Just to the Jesus Blessings! Hmmm, when did I take them off? What sidetracked me? I have nothing to even complain about! My goodness, I am still taking lessons from my baby! Thank you God for two precious, greatest, most wonderful, loving, gracious, kind, and sweetest gifts that are pure blessings! Thank you Lord for your Blessings on ME!

Every Day is a Miracle! Thank you God for the Miracles bestowed on my family!
Donna

Tuesday, March 7, 2006 1:58 PM CST

Hello,

I guess I can update this late can't I? Overall, Nicholas is a little droopy and on the grumpy side at times. Sometimes he is laughing and playing....giving lots of my sugar away!

Jumping up and down today, he called to Franzy! "Franzy! Franzy! Come here and look! There! See it! Its the cloud I've been waiting for!" Frances look and saw a big white fluffy cloud.......that's all..just a cloud. If only we could see what he sees! If only we were looking up, like he does. If only we had the faith of a child, we could see more. We look through a glass darkly. We need the scales pulled off our eyes and allow the light of the Lord to shine through, then we would see. We cannot see what God is doing. We cannot see what God has done or what He will do in the future. We only see what is happening now. In the moment of time...a small segment of life. In the scheme of things, we have to deal with what is happening now. We cannot see the future. Making the most of every minute, loving every smile, cherishing every hug and kiss, remembering it in detail, heart photos for rememberance.

Miracles, Miracles, Miracles and More Miracles,
Donna

Monday, March 6, 2006 9:35 AM CST

Hello,

Nicholas had a good weekend! Spencer has been sick! Started on Saturday with a runny nose and sneezing! Face really flushed on Fri evening! Ah, it just keeps on happening! Bless his little heart! I don't think he will be able to tolerate the cold very much! He slept on Sunday and last night all night through! He is a real trooper!

Nicholas is a trooper too! He just keeps on trudging along! He doesn't complain except said his eye was hurting this weekend.....If I can keep him from getting Spencer's cold, it will be a miracle! I wouldn't let him touch the same computer or anything! Trying!

Pray for all of us! Spencer that he feels better, Nicholas that he gets a miracle, for Mom and Dad that we will have grace and strength to get through all of this! With our hair intact! With a sane mind! Well, I can hope can't I?

Praying for miracles,
Donna

Friday, March 3, 2006 7:42 AM CST

Hello!

Nicholas was feeling pretty good! He felt good enough to quarrel at Kim! Oh, you should have heard him! It was hilarious! Kim couldn't help but laugh! It sure made me smile! He ran a low grade temp all day yesterday and is still coughing some but other than that he seems ok. He was a little on the pale side....

Yesterday was Parent/Teacher Meeting and I went by to speak with Spencer's teacher. He is now reading on a 2.4 level! They cannot believe it! He is the only one in the Pre-K that is reading at all! I couldn't believe that! He still is having a few little stubborn spells but other than that, he is a pure joy at school and at home! Precious!

Now on to a serious thought! If LOVE could grow bone marrow, it would be oozing out Nicholas ears! I have nothing else to offer him but love. I am powerless. I am helpless to "fix it", and no matter how hard I try, its not happening. I can't make him well. I can't make the marrow to grow new cells. I can't stop the marrow from dying. I can't make it grow! I can't do anything to help my baby. All I can do is pray for Jesus to touch him. It is all in His hands.

Franzy just called and Nicholas is covered in hives AGAIN! I can't stop the hives either! Is there hope? Without divine inspiration to the drs to come up with a miracle drug to get the marrow to respond, then no. Without the touch of God, no. God IS able, God can if its in His plan. God will in His time. My time is now! God can be 4 days late and still on time!

Praying, begging, pleasding, crying for miracles,
Donna

Thursday, March 2, 2006 10:01 AM CST

Hello,

Home health nurse said Nicholas' lungs sound good this morning! I about fell over! Oh, I'm glad! He is doing some better today, just clearing his throat continuously!

Spencer didn't want to go to school this morning! He had a backpack full of reading material and activities that he had to take back and he wanted to keep them! Bless his little heart! He wouldn't wear the clothes that I chose! Oh no! Little hard headed youngen! Wonder who he takes that after!? Dad says Mom! Mom says Dad!! Ha! I guess he has a double dose! Lord, please help us!

I just heard from a Camp Sunshine volunteer that cannot be at the FA session! Nicholas will be devastated but hopefully we can connect up on the way back home! That would be good! To think he is going on a 30th Anniversary Cruise! Ahhh, That is worth it! 30 years! Wow! Congratulations are definitely in order! To Mr and Mrs Joel F Angelico, Congratulations and Best wishes for a wonderful cruise! God has bless you all with 30 yrs together and we will pray for 30, 40, 50 more!

All other volunteers better get ready for FA session on July 21st--24th this year!!!! We are looking forward to seeing you all again. Praying that Nicholas' health will allow us to make it!

Elisabeth is home from the hospital! Sending big hugs and kisses to her! Jo is home but really needs to be back in the hospital! Pray that her pain eases up. What these children and adults go through are beyond comprehension!

Miracles.........
Donna

Wednesday, March 1, 2006 7:29 AM CST

Hello,

I guess Nicholas was just freezing because he didn't spike a temp or anything. He was actually laughing and playing really well last night! He was feeling good! He is still on antibiotics. I listened to his lungs last night and they sound horrible! Not full of fluid put popping and crackling! His secretions are really thick but I know he was up a couple of hours early yesterday! We will just have to add saline into his trach several times during the day to keep his lungs moist! He is wanting to eat! Everything! Anything! Breaks my heart! Of course, I gave him some last night and he didn't cough once! He only ate a small amount of chicken gravy! He got the taste of it anyway!

He is feeling a little bad this morning. A little grumpy!
Puckering up and crying a little on the phone. He is feeling a little off today....

Conversation Yesterday:
Nicholas asked Franzy, "Who was your baby sitter?" She told him her Mommy didn't work. "Was your Mommy mean? Dad mean?" She told him, "No, they were really good and I loved them." Then she told him that she really missed them. Nicholas said, "When I leave, I'll cry...because I'll miss my Mommy and Daddy, but I know they will be alright." "I'd say your Mom and Dad miss you too!" Then, the conversation turned to Heaven. Did he even hint any of this to Mom? NOPE!

Maybe that is why I just about had a total melt down in Wal-Mart! It just all came crashing down and I barely held it together! I think it was the clothing. Then, when I had moments alone at various times, I'd just pucker up but couldn't scream like I felt like doing. Just prayed for strength continuously. Oh, the pain and heartache is tremendous right now and I do desire your prayers.

BUT most of all, please pray for Nicholas and all the other children that are going through tremendous amounts of pain. They are the super heros! Pray for the empty arms, we lost another FA patient, Taylor. nc/jeff also passed away, remember his wife and family. Too many...

Blessings and Bear Hugs,
Donna
Donna

Tuesday, February 28, 2006 7:20 AM CST

Hello,

Whoooo hooo! We broke a record! 2 hours and 15 minutes from the time we stepped into the hosptial, received his platelet transfusion, and we walked back out! Definitely a record! It was due to a good RN! She knows Nicholas, they all do!, but she knows and loves him! She was getting him out of there as fast as she could. But then again she said something about getting home in time for a TV show that wasn't even going to be on!!! So, there may just be an indication of why it went so fast! HA! There was a child that came in before we did with the flu! With Nicholas' ANC low, I was terrified.

Now, this morning, he is chilling! He did have hives during the transfusion and I had to give him another dose of Benedryl. He was major grumpy last night! I mean major! Just pray for the protection of the Lord to be on him today.....

Pray for all going through treatments, finished, or needing them. Pray for Spencer's little girl friend, Elisabeth from GA, she is in the hospital with the flu too.

Thanks to whomever donated O Platelets on the 22nd, Nicholas really needed them! Thank you for a wonderful gift. If you donate in Nicholas' honor, please let us know! I may just start a list! They are the true heros!

Lord, we still need miracles,
Donna

Monday, February 27, 2006 6:57 AM CST

*****Platelets are 9k....I was guessing 8! and HGB is 10.5...ANC-140, yes, it is 140, too low!! We will be getting a transfusion this evening if platelets are available.

Hello,

We have had a big birthday weekend! The best bear tale teller had a big 77th birthday! Happy Birthday Mamaw! We love you! We gave her a surprise birthday dinner and I don't know how on earth we surprised her! It did turn out well and now everyone is full, fat, and sassy!

Trossie is doing much better except for the soreness! She is on the mend now and we thank you for your prayers. God is merciful once again.

Nicholas has petechia all over his face and has had since Saturday. I'm sure he will get transfused with platelets today. I was worried and called home health to let them know if I called back that we would need a cbc! He didn't cough up any blood thank the Lord! He was playing yesterday with Sheena and Wesley and just laid down in the floor! He was tired! Oh, it is heart breaking. I did have a time telling Spencer to be careful all day yesterday! Whew! Nicholas still ended up with lots of bruises! He just won't stop or slow down! Still wants so badly to wrestle and tickle, and play rough! Spencer is feeling fine and just full of life! Flipping and flitting around everywhere!

Did I mention his blood culture came back positive? I wasn't expecting that one and felt like it hit me like a ton of bricks. He was put on antibiotics Friday evening. Another round!

I'll post the counts when I get them! I hope she is there really early this morning so we will get the results faster!

Praying, Believing, Hoping, for miracles!
Blessings and Bear Hugs,
Donna

Friday, February 24, 2006 6:40 AM CST

**Blood cultures came back positive!! Oh, it never ends! Now, its back on antibiotics again!!!



Hello,

Trossie did come through surgery ok. She had one bypass. The Lord has been merciful again. Her arteries are small and it burst when they installed the stint and it just didn't heal. They were taking her off the vent last night when we left. I took Mamaw and Papaw to hospital. Thank God all is well.

Nicholas and Spencer were asleep when I got home last night but I did get to talk to my baby this morning! He was so sweet! He was talking in his sleep, laughed and said, "Did I scare you Sissy?" He is going to do the St. Judes Mathathon! If anyone would like to sponsor him, let me know! They are letting Pre-K participate this year!

Nicholas' cbc came back with Platelet at 29k, hgb-10.8, and ANC of 1960! Thank God there is enough marrow left to stimulate the white cells so he can fight off infections. No sign of any more hives but that doesn't mean he cannot break out today! We just take it one day at a time! Nothing else left to do except pray, as if we haven't been!


Pray for an unspoken request. God knows. Pray for continued healing for Trossie. Pray for salvation for our family. Broke my heart! I do thank God for Mom and Dad and for them raising us up in a Christian home. It's up to each individual to seek out their own salvation. When we stand before God on judgement day, it will be only us and God. We can't wait on someone else or blame someone else for what we didn't do.

Praying, pleading, begging, asking, crying for miracles,
Donna

Thursday, February 23, 2006 7:26 AM CST

*Pray for Trossie, my sister in law. She has to have a by-pass done. They tore an artery when they put in a stent and it isn't healing. Keep praying!

Hello,

New G-J tube changed and holding! Nicholas is petrified when itis loose! The SAME dr changed it out this time too! I did get to have my say! He was some nicer this time and could tell I was sort of aggravated to say the least! I told him next time he better listen to Momma! I'm sure he will!!!!!! LOL! He didn't believe me and put water in the balloon to check it himself and it didn't leak one bit and he was shrugging his shoulders and pursing his lips...like Hmmmmm, she is crazy! I said, "Here let me show you where the hole is!" I proceeded to show him and squirted water everwhere!!! Yes! He believes me now and is going to show the manufacturer! He kept saying, "They should last forever!" I said, "Well, I'm not doing anything to them!!!!" I'm sure I had my hands on my hips too!! Then he was super nice...while I was explaining to Nicholas each step the dr was doing, he said, "You could put one of these in!" I just laughed! Honey, give me an x-ray machine and I won't even bother him again! LOL! Yeah, right! I could replace one though! I know what to do and the xray tech didn't! That's life though! I guess Experience IS the best teacher!

Spencer just couldn't bear to miss a thing and went with us! He worries so much when we are gone! I understand and miss him too! It actually helps to have him with us, that way I know what he is doing. They both were so exhausted and slept most of the way home! and Spencer slept through the night! He woke up and wanted me to sleep with him around 3 and in a really cute sweet voice asked, "And where's my chocolate milk?" Awwww! Of course, he got his cmilk! He was in a great mood this morning too! He just bounced around everywhere yesterday! Too cute!

Pray for all of us, we are all exhausted!
Pray for Nicholas, Franzy just called and said he now has hives all over his body!! He didn't have any yesterday!

Praying for miracles, peace, and understanding but mostly for grace to get through,
Donna

Tuesday, February 21, 2006 7:02 AM CST

***Nicholas is now breaking out in hives! I do believe it is 5th disease! Thinking back while we were at Cinci, Spencer's face did turn red but I thought it was from the fever! It has to be viral! Please pray that the hit on Nicholas' marrow isn't too suppressive.

Hello,

Well, I looked at Spencer's belly last night and the spots are still there! They had totally disappeared but now they are back! They are really faint but visible! The ER doctor said the shot would last for a week! Well, Benedryl will help I hope!

Spencer was in fine form last night! He was bounching off the walls! Actually, swinging on the Nicholas' feeding pole and knocked it over, causing great panic! Pulled the already loose G-J tube and Frances had to add more water to the balloon! We are barely keeping it in! I'm not sure how much longer it will last. We are waiting on a replacement date! Nicholas was so mad at Spencer! He fussed and quarreled at him! He is very protective of that G-J Tube and immediately grabbed it so it wouldn't come out. Thank God he did!

We were looking for one of the brush attachments for the vacuum cleaner and couldn't find it anywhere! I thought I was being smart and asked Nicholas if he knew where it was! He thought for a minute and much to my surprise said, "You know those pink flowers in the living room? I hid it in them!" It was too funny! I asked him why he did that and with sparkling eyes he said, "To aggravate you!" See! I told you he was rotten! Thank God he feels well enough to be rotten!

Pray for Baby Theo's family, the Helberts. Theo passed away yesterday. He was 9 months old and had a brain tumor. Oh, that is so heartbreaking.

Congratulations to Brandi and Greg Stewart on the birth of their twin girls, Hannah and Brooklyn! Blessings!

Pray that the Aranesp stimulates the small amount of marrow that is left.
Little is Much with God in it!
Donna

Monday, February 20, 2006 8:00 AM CST

Hello,

Well, the weekend began with Spencer waking up too early on Saturday morning! Then, he began scratching his back and saying, "I'm itching!" I looked and guess what! He had broken out in hives! I stuck him in the tub and gave him a bath and noticed more popping out on his tummy, face, and back. I gave him a dose of Benadryl and it seemed to help but made him sleepy! He slept and about 2 pm, he begin to break out again! They would erupt then fade away and leave a little red speck! This was ongoing Sat and Sun! He seemed to be feeling ok but looked pale to me Friday evening, that was my only clue! I stopped his Amoxicillian and talked to the pediatrician that was on call. He said he was possibly having a reaction to Amoxicillian! I ended up in the ER with him Sunday evening and they gave him a Decadron shot! By last night, he hardly had any on him! My goodness, he is such a big boy! He didn't even cry when they gave him a shot! He only whimpered afterwards! He said, "Mom, I hate that place!" Every time he has been to the dr, he has gotten a shot! It's no wonder! I was so proud of my big little man! I'm just thankful that Nicholas was fine and totally rotten! One at a time! Whew!

Nicholas on the other hand was fine and no mishaps. He sounded a little dry last night and didn't sleep well! I could hear him all night long, making noises! We will be getting bloodwork on Thurs this week. Dr Harris wants to continue the Aranesp for a while yet! Pray it begins to work. One little funny thing happened this weekend! He lies down on the couch and settles in for a long "Dial Mamaw Bear Tales!" He was playing with a bear and I asked him if Mamaw was still on the phone! He said, "Yes!" then picked up the phone and said, "I'm back, Are you there?" I realized he was just mocking her when she gets another call! I couldn't help but laugh! Mamaw had no clue what was going on! He had just put her on "HOLD!"

Awwwww, the precious moments, smiles, actions, sweetness, sayings! Precious! Precious Boys!

Praying for all the empty arms, ones on treatment, and the ones that need treatment and don't have any choices left to try.

Praying for Miracles,
Donna

Friday, February 17, 2006 7:10 AM CST

Attention Vermont Residents!
Please go to a BONE MARROW DRIVE! For the FLYNN Family in Maine! Jordan, Jorja and Julia all have FA. Jordan is nearing tranplant stage with her counts. See them here: http://www.boston.com/news/necn/Health/
Click on the Bone Marrow Article or the Twins Photo to view a video of them!
We are doing one in Okemo, MT Vermont this weekend, actually on Monday, Feb. 20th and I am going up to that one. The Department of Defense helps coordinate these for us and gets people registered free of charge!!!!

Hello,

Well, what can I say? 10 hrs, platelet, and red cell transfusions later, my imp was back! He began smiling and playing! Making faces! Flirting! Super Hero Nicholas Tales! Ahhh, I was so happy to see my baby back! You can ask Sissy Bear about the prior actions and just had bad he was acting and feeling! I did get before and after photos too! I'm just too tired to think at this point!

I do have good news! I went to pick Spencer up yesterday and his teacher told me that he was reading on a 2nd grade level! 2.3 to be exact! I'm so pleased! He is a sweetheart! He did get to stay home and ride his bike outside yesterday evening! He also ate a sweet pickle and mayonnaise sandwich? I guess!

Thanks Sissy Bear for going after dinner last night! I forgot all about eating until my tummy reminded me! The chocolate came in handy too! *sleepy smile*

Still believing in miracles! Praying for one!
Blessings and Bear Hugs,
Donna

Thursday, February 16, 2006 8:11 AM CST

**Ok, major scare! Home health had just given the Aranesp, Franzy got Nicholas up and in the living room. He stopped breathing! She ran and got the HH Nurse and they had to deep suction him and clear out the mucus plug that had the trach closed off. He can still breathe via his nose but forgets that and panics! My theory is...his bigger trach is drying him out some and creating the plugs, thus he will need more moisture.....
Now, he is fine and we are all panicking!

Hello,

Nicholas is running a low grade temp but that could be due to low HGB. Home health is there now and I'm wondering what his counts will be. I'll update maybe a little later.

My mind is just in a whirlwind......as you can imagine only if you have tried numerous medicines and nothing is bringing his counts up. I'm clarifying now....if your child has counts around 50k....please start medicines to boost the marrow while there is marrow there to boost! If it continues on the downward trail....you are running out of material to work with or stimulate. ESPECIALLY, if you cannot go for bmt or do not want bmt.

Spencer is fine! He came home with a bruiser on his lip yesterday from an accident on the playground. Another little boy's hand or finger hit his mouth! Another little boy hit his head and had to go see the nurse! Must have been a rough day! or all the children had cabin fever!

Praying for miracles, I have more faith in God for a miracle than I do in a Successful BMT! Yes, we may have to decide to go to bmt but that would be the last alternative! God works in mysterious ways......maybe even through transplant! Who knows! We will know when the time comes.

Blessings and Miracles,
Donna

Wednesday, February 15, 2006 6:44 AM CST

Hello,

I went home yesterday to VALINTINES! Bunches for Nicholas and Spencer! Spencer said they liked his Valentine Box! I did get some photos and will post them shortly if I get a chance! Marci, the boys loved their box of goodies! The bears, as big and beautiful as they were, took second place to the books! They couldn't even look at them for looking down in the box for the books! It was so funny but I didn't have my camera handy! Nicholas also sneaked into the M&Ms! No, actually Dad opened them for him! He didn't even hardly nibble at them. Thanks to all who sent cards, Racquell, MaryAnn, your continued support does not go unnoticed! Thanks!

He is just not feeling well. He did want to play on a mattress in the floor! I told him he couldn't rough house, and he asked, "But Mom when can I?" It's hard to answer all the "When can I......eat, jump, run, wrestle?" questions! I told him he can eat when he doesn't aspirate anymore! His response, "You've told me that a thousand times!" Ha! Too funny!

Kathy, we will definitely miss you as you go on your mission trip! We will be praying for you though! Thanks for giving blood!

Pray for all the ones on treatments of some type! Pray for Clay H, that the platelets will begin to hang in there longer!

I keep looking up on the shelf, but I realize God is everywhere!
Blessings and Miracles,
Donna

Tuesday, February 14, 2006 6:46 AM CST

Hello,

I don't know if you noticed the cbc results yesterday. Yes, they came yesterday and will come again on Thurs too. His hemaglobin was down to 7.8, platelets 40k(they were post tx, 123k on Wed, the 8th!), and ANC is 494. Yes, overall they are all low. His lymphocytes are up and that indicates he is fighting off something! He was droopy yesterday!

Last Friday, Nicholas motioned for Franzy to lean over to him. She thought he was going to kiss her. He said, "Look up there! Do you see it? It's white with a cane." Frances noticed he was pointing up to a shelf that had brown bears on it! He wanted her to move the bears! Frances couldn't see it! She told him "Ah, that's just your guardian angel!" Sounded like "The Good Shepherd" to me! Of course, he hasn't said a word to me about it! No, he won't either! He is trying to protect MOM!

Spencer was back to his wonderful, loving, little self yesterday! He loved on Nicholas all day long and on Franzy too! Back to eating good too! He has been wanting to sleep with us the past couple of nights! Last night, he was back in our bed around 4 am! I know he knows when Nicholas isn't feeling well and he worries about him too! Too much for one little guy to process!

Did I mention Nicholas' mickey button is loose again? The dr checked it and it was fine! No wonder, I had already put more water in the balloon! That is the dr that needs a heart transplant or bed side manner transplant! or just a dose of iv sweetness! Maybe that is what I will suggest instead of slapping him like I'd like to! Ah, he brings out the worst in me! Yes, that means another trip back to Cincy! I will go in with it hanging to his knees so he will listen to me next time! Ha! Nah, I wouldn't do that!

Praying for miracles for all the ones getting treatments, finished with treatments, or need them.

Maybe if I get slap-happy out of my system, I can see the Good Shepherd too,
Praying for forgiveness and miracles,
Donna


PS: For Valentines Day, make an appointment to GIVE BLOOD! Let me know!

Monday, February 13, 2006 7:31 AM CST

Hello,

Well, overall his marrow is down to 0-15 percent cellularity! About half of what is was last year. No leukemia or chromosome changes and we thank God for that.
Questions are running through my mind.....I won't depress you with them..just from a Mother's heart type of questions and continual prayers for a miracle. The "Why" ones just do not come to my mind, I believe that is all in God's plans and not for me to question. He IS the Giver of Life and it just ain't over until the Big Guy in the Sky says so! Nothing more to be said. AMEN! God is good All the time and All the time God is good! Ann, that always brings you to my mind! God's Will, not mine be done. How on earth can I feel that way? Because, I trust GOD, not myself! I am totally helpless, but God is ABLE!
Able to heal broken hearts, Able to heal Fanconi Anemia, Able to heal Leukemia, Able to heal the blind, Able to speak and Peace comes, Able to mend broken homes, Able to feed the hungry, Able too do anything........what is your need? Take it to the Lord, He alone will give you the "peace that surpasses all understanding."

He was feeling droopy over the weekend again and had a temp of 100.4d! It is very nerve wrecking! One or the other seems to be sick all the time. Spencer is now on antibiotics! He is taking them really well! I was so surprised! He thought he only had to take them for one dose! He is feeling so much better though! He was rotten yesterday! It was good to see him that way though!

Nicholas did get a bigger trach size and it is just a little harder to vocalize! He was aggervated over the weekend! He had to take a breath between each word. He was furious and puckered up so pitiful! He said, "I didn't want a new one!" He is able to get more air in and more junk out! He is getting lots of thick yellow junk out! I just hope and pray he isn't getting what Spencer had!

Pray for Clay Hart, he is rejecting the platelet transfusions, Pray for all the children and adults taking treatments.

Blessings and Miracles,
Donna

Friday, February 10, 2006 7:55 AM CST

Hello,

I see Sissy Bear stole my thunder! Yes, he had a humming along just going from dr to dr, all running behind, kind of day, autographing posters, flashing smiles, dimples showing, and major flirting! Major droopy though but smiling through it all... He knows THE SECRET! Thanks Heidi for that email.

Nicholas wasn't feeling the best Monday or Tuesday, would actually lay his head over on me! I know he isn't feeling great but overall, the Lung specialist words were, "I was pleasantly surprised!" I knew the lungs had to look better but not according to the junk he was coughing up! The invasion in the lungs and tummy are now resulting in bloody secretions but hopefully that will diminish today. He was up at 4 am, coughing and acting so sweet while pottying! He is rotten! He is coughing some this morning and saying he is tired. His hgb was down to 8.4! I was devastated! Does that mean the Aranesp isn't working? I don't have any other choice but wait and see.

Spencer on the other hand is feeling horrible with ear ache, runny nose, coughing, and temp! Ahhh, it never ends! The change of atmosphere and RSV running rampid everywhere only indicates he may just have rsv. He was some better last night but woke around 4 am with ear ache. Pray for him to feel better soon!

Happy Birthday to DAD! Yes, today is Jeff's birthday! Spencer came in the other day and asked me if he was 21! Sure Dad! Tell them you are 21 but that won't work!!! Ooops, that would make me 19! Hmmmm!

Begging for crumbs, praying for miracles,
Donna

Wednesday, February 8, 2006 6:27 PM CST

hey, just talked to Donna. Nicholas is sleeping; he is worn out from all the testing today..,,they say he is looking better than he did last visit. His platlets are down to 14 and hemoglobin is down, too, so I guess they will be going for transfusions by Mon.
They are coming home tomorrow. I don't know if Nichols will know us or not!!!! He was busy yesterday autographing his pictures on the posters!!! He was humming and signing!!! He loves all that attention! Can't you just see those eyes sparkling and those dimples shining?! Gosh, how I miss him; I have stayed away since my "flu infested" husband has been home!!! It sounds like he has bugs and not "the bug"!!!!OH, well...
Spencer is droopy, but is doing well overall; he is not missing school!(????)and has not mentioned coming home. Usually, at dark he wants to go home.
Donna will be back, so tune in Fri. for an up-to-date account on the celebrity.
Remember them as they travel home tomorrow.
Sissy Bear

Monday, February 6, 2006 10:57 AM CST

hello. Sissy Bear here!
Nicholas and family are in Cincinnati; they will be back Thursday. Nicholas has 2 full days of testing. Please remember them in your prayers.
love,
sissy bear

Friday, February 3, 2006 7:31 AM CST

*Franzy(Nicholas' calls her this!) just called and said Nicholas is chilling again!

Hello,

Well, Nicholas is still feeling great! He is so pesky! I actually haven't seen him like this in forever! He is rotten to the core! I love it! He seems to be in fine form! He is looking a little pale but his Oxygen saturation is 98 percent! Better than low 90's!

Spencer and Nicholas were playing together last night and I just sat and listened to the chatter! I absolutely love just listening to them playing. Pure music to this Momma's ears! Trying to soak up every minute, filing them away in the Heart Memories folder! How can I hold on to all of them? How can I capture their personality? They both are so precious.....

Spencer is having a hard time right now, processing everything... He told Nicholas that If he could, he would take his PICC line out and throw it away. He would throw away all the PICC lines everywhere...
I know he is having a hard time with all of this so please pray for us. Pray for me, it's breaking my heart but I know he needs to express himself. I told him to tell me anything but not in front of Nicholas because he hurt Nicholas' feelings. I know some of what he is saying is normal sibling sayings but they are breaking my heart! I guess when you are tired and washed out it doesn't take much!

I was telling someone about how well Spencer was reading and looked around and he had a huge smile on his face! The power of words is phenominal! They can really boost someone's ego or shatter their heart into a million pieces. Be careful what you say to your children. Pray that I will have the right words to guide Spencer through all of this. Pray for guidance and peace in all our hearts..

Praying for all getting treatments too. Pray for those needing treatments of some type. Pray for miracles to the ones that cannot get the treatment they need. Pray for God's peace that surpasses all understanding in the hearts of the parents.

Only by God's grace,
Donna

Thursday, February 2, 2006 6:59 AM CST

Hello,

It seems that Nicholas is BACK!! Full force, pure IMP! He was feeling so much better and laughed all day long! I was trying to get him dressed and he would throw his underwear and I would try to catch it! He would burst out laughing! Once, they went up in the air and sailed out into the hallway, much to his extreme delight! He was in rare form! Yes, I LOVED it! Ms Marci was on the phone with him during this time and she kept telling him he was silly! He definitely was! Believe me, a much needed change of scenery! Needless to say we didn't get much accomplished yesterday but we had fun!

Spencer came home and was happy Mommy met him at the bus! He loves for me to be home and didn't want me to come to work this morning! He was feeling a little off yesterday evening...I think he had been interrupted during his nap! We did get to work on his Valentine box though! Nicholas has to have one too! Just wait until you see the photos! They are so cute!

Guess what! I received a call from Home Health and they apologized for what happened. I think I figured out a remedy......we'll see. Pray that all goes smoothly.

Praying for all the ones getting treatments. Pray for all the children that cannot get any more treatments. Pray for Miracles for them and for Nicholas.

Blessings and Bear Hugs,
Donna

Wednesday, February 1, 2006 9:03 AM CST

Hello,

Well, we are home as of yesterday around noon thirty! I guess it had to be the most horrible visit yet! I was already exhausted and still had to be up again most of the night! Hawk eyeing the med nurse! AUGGGG! Horrrible experience! Let me back up! We went to register and there wasn't an order! No faxed orders at all! I just about blew a fuse! I knew Dr H had ordered them early because he knew Nicholas was sick and wanted him seen by dr! I decided to leave work early to get him to hospital by 4 anyway...I guess I didn't do my usual checking to see if the platelets had been ordered! Like it is my job! to check on everyone else! I shouldn't even have to do that!!!! THEN, as we were leaving the lab to get a chest xray, they told me that Dr Begley wanted me to go through the ER! Yeah right! My immediate response was...He will be up on the floor getting his platelets and if he wants to see him...he will have to come to us! I'm not going through no ER! on top of all this other! Yes, I knew Nicholas wasn't feeling any good at all and I also knew it was viral! Anyway, I could see it on the x-ray! I knew what was going on......No I'm not an x-ray tech but I can use common sense and see a lot! Duh! Besides Nicholas was admitted because of the x-ray! Well....needless to say nothing happened after that for 3 hrs to say the least! When Dr Begley ordered another antibiotic, the med nurse came into the room with the sniffles and she decided her nose needed wiping! I'm not kidding, she started to hook up his meds without gloves or washing her hands! I know my eyes were big as saucers and thinking back, I was a true Momma Bear! I got between Nicholas and her! I told her his PICC line had to be cleaned for at least 30 sec and I did it! Then I reached for the medicine line and hooked it up myself. I told the House Nurse that she had to wear gloves before she hooked up anything else! That should be standard anyway! When she left the room, Jeff asked if she came from housekeeping! I knew then I was in for another long night! That was just the beginning....I don't know if you even want the boring details.....I'll just put it this way...Nicholas has to have heated moisture and they do not have any heaters anymore, all the hospitals have gotten rid of the heaters! No heater=Nicholas's secretions were very dry and turned into mucus plugs and very hard for him to cough up! Dry mucus = tearing away from lungs = bleeding= Momma's nighmare! Anyway, I think you get the picture! His temp spiked to 103.7d during the night and finally came down! He was chilling most of the night! Whimpering and having to take in extra air(was on O2 too) with a very panic striken look on his face! Yes, definitely terrifying. He finally went into a deep sleep around 4 am.

We came home and I hooked him up to his moisture! About an hour on it, he began coughing up lots of junk! He has had several bad gas spells and ends up throwing up! Now, I'm petrified that his Nissen has come undone. He began feeling better and up running around playing and even had school last night! He wasn't totally up to par but did great! He didn't cough at all last night until early this am! He has had a rough morning but feeling much better! He is back to his old rotten laughing self! He hasn't ask to eat since I wrote about how hard it was to turn him down.....I guess I jinxed him. I would much rather he be asking for food instead of being sick!

That is all for now! More later and maybe never! Who knows! I'm sure everyone is tired of our roller coaster! Thanks EVERYONE for your prayers. I knew you all were praying and that really helped! Thanks Prayer Bears for being just that...a PRAYER Bear! If you pray for us and are not a prayer bear, feel free to join, just fill out the Form on JOIN OUR GROUP on www.freewebs.com/prayerbears

Spencer is still Spencer! He took an accelerated reading test and made 100 on it! He is too smart!

Pray for all the ones on treatments!
Pray for all of us!

Praying for Miracles...Hey, his Hemoglobin (HGB) came up .3 points! I'll take it!
Donna

Monday, January 30, 2006 9:12 AM CST

**Nicholas platelets are down to 8k :(
Temp went down but is going back up! We are going for platelet transfusion and chest x-ray... Storm Heaven on our behalf please.

Hello,

A very sleepy hello at that! Yes, Nicholas' temp has reached 103.3d this morning and I have fought it all night long. He has had breathing treatments and meds around the clock! Waiting on cbc results today.....know he will need some platelets! Around 5 yesterday evening, he turned really pale and a couple of hours later, his eyes started watering and nose running! By 8 he crashed! He looks really bad and so nauseated! I think he has what we had! I do think its viral.....his lungs sound a little junky but I don't think its pneumonia! Hopefully, his fever will break and he will get his platelets at some point today.

I received a call from school that Spencer was sick. Well, another little girl threw up and that caused him to throw up! Puke party! ARRRRGGG! Then he screamed his head off and cried his little heart out when he had to go home! He wanted to stay! Bless his little heart! He is so torn up dealing with all that is going on! Pray for my precious Spencer too. Its hard for a little guy to deal with these big issues all the time...day in and day out!

Pray for all the FA adults and children..they face tremendous decisions. Them or the parents definitely need God's guidance. Pray for all of us.

Praying for Miracles, peace, comfort, and no more throw ups,
Donna

Friday, January 27, 2006 8:02 AM CST

**Temp...100.2d! Never ending cycle! Please continue the prayers....

*check out new photos! Introducing...Nicholas Evan Mills!

Good Morning,

Nicholas' cbc results........Platelets at 32k, Hgb 10.1, and ANC 1470! Will check them again on Monday. I wish they were higher! He sounded a little off with his breathing or something trach related last night! I'm praying he doesn't get what Spencer and I have had! That would be really rough on him. This morning he coughed and sounded congested too. Pray I can head any more colds off! He is beginning to look pale and dark around the mouth with periods of blueness around the mouth...That anemic look that is so haunting! I hate it!

Spencer did go to school today! He was raring to go this morning! Bless his little heart! I can't wait to hear about his day! He will be so hyper and talking ninety miles an hour! He is so sweet! Gave me the biggest, bestest bear hug and kiss this morning! Just made my day start out wonderful! I will just have to replay it several times today! Hmmmm, Hmmmm, Hmmmmmmmmmmm.

Remember all the ones taking treatments...Ms Clara has 2 more chemo sessions and she is through! She is getting some symptoms so pray for her. Remember Robbie, his counts are beginning to climb again, PTL, Praise the Lord.

Praying for MIRACLES,
Donna

Thursday, January 26, 2006 7:01 AM CST

Hello,

Nicholas was still up to his impishness again! He hasn't felt this good in so long! He was just bouncing until I mentioned school! He didn't want school because I was the teacher!! He actually did pretty good...he did a page of math, which meant he did 85 problems in a hour! They were simple and he should have finished sooner! Mr. Stubborn! Then Mr. Super Hero Nicholas burnt the paper and pencil up! He was so proud of himself afterwards! One thing I noticed, his hand gets really tired! He hold the pencil with two fingers and he doesn't have much strength in them!
He then read me a book and did really well! His teacher is going to be surprised when she sees that math page!

I kept Spencer home again today and he is UPSET!! He wanted to go so bad today! There was suppose to be a new little girl there today and that is all he talked about yesterday! His cold in his chest seems to be breaking up and I didn't want him to get worse! Needless to say he was broken hearted this morning. He did really well last night and I could tell he was feeling so much beter! Hopefully, he can go tomorrow!

One problem I'm having to deal with is Nicholas wanting ot eat! It is breaking my heart! He is aspirating on everything he attempts! Including chocolate icing and everything! He keeps asking, "Mom, When CAN I eat?" I keep telling him when he doesn't aspirate anything anymore! He says, "You've told me that a thousand times!" Then will turn around and ask for something else. "But I'm so hungry!" "I really would love to have some roast!" or some....bread, cake, mashed potatoes,..any and every thing in site! Ok, I give in and give him roast...but tell him he has to stop when he starts coughing! He ate some and told me....."I didn't cough Mom!" indicating he wants more roast! Then, he asked for some paper and Dad told him he could have it if he didn't eat it! Nicholas said, "I wish I could eat it!" BROKE my heart! He seems to be aspirating more and more! In case you don't understand the situation totally...aspiration = pneumonia! It is a continual battle, keeping him as healthy as possible. eating vs pneumonia, eating vs broken heart, feeding him vs broken heart, hungry vs pneumonia, hungry vs broken heart! Get the picture yet? I can't not feed my baby! Period! Its very hard and I hold off as long as possible! At least he can taste the juices of the roast! He doesn't swallow it anyway!

We are getting blood work today.......cbc and giving him his second dose of Aranesp! I'm guessing....platelets at 36k! Hope they are higher! They actually should be higher! They drop at about 17k per day! Oh, will we see the HGB staying up in the next 6 weeks? I pray so!

Praying for all getting treatments everywhere! Praying for miracles, blessings, and peace of mind and heart. Thanking God that Joyel Wayne is feeling better and out of the hospital! He had the flu, type A and B and pneumonia!

Miracles are in the making,
Donna

Wednesday, January 25, 2006 7:10 AM CST

Hello,

Nicholas is feeling great! He is a pure little imp! He was aggravating Sissy Bear last night! Wouldn't let us talk privately! He would turn the speaker phone on and cackle out laughing! Giggling up a storm! Eyes sparkling, rosey-red cheeks, pure little impishness pouring out of his dimpled smiling, giggling face! Absolutely beautiful sight to see! Ahhh, if I could have captured that on film! Priceless!

Spencer on the other hand didn't feel well at all! He was very pale and nose running! He started chilling and wanted me to hold him. I wrapped him up in a blanket and we snuggled for a while. He fell asleep fairly quick and ran a temp all night long. He is coughing some and sounds really croupy! He has what I had! He seems ok during the day though! I kept him home from school again today. Pray for my baby to get over this cold and feel better soon. I was up every couple of hours checking on him and gave him meds around the clock! Bless his little heart! It is so hard to see him sick! It breaks my heart!

When we got home from Cinci, Spencer told Nicholas..."I was going to pray for you but I forgot!" Oh, that sure brought a smile to my face! He is so honest! He went into this big tale about being down at Sissy's house and ..... I have no clue what he was talking about! Then, they were talking about the next trip! Nicholas was trying to talk him out of going! It was hilarious!

I'm still feeling like I have jet lag without even flying! BUT I'm FINE! It is amazing how one little episode will zap the strength right out of you! Too many episodes together I guess will do that too! I know! I know! God won't put more on you than you are able to bear! With that promise, I can stand strong! God is good all the time!

Don't forget to pray for miracles for all the ones on treatments. We are humans and want an earthy healing. If you have health, don't forget to count your blessings.

By God's Grace,
Donna

Tuesday, January 24, 2006 8:03 AM CST

Hello!

We are home and very tired! Nicholas was the usual trooper and did a super job at holding still! He is awake and very much aware of what is going on during this procedure! He is a Super Hero! The PICC line team really bragged on him! The Dr said that he is the BRAVEST little man that she has ever seen! She said they usually have to put 7 yr olds in a papoose! Nicholas was very still and didn't kick at all! He cried and would say "OOOwwwwl" but didn't protest very much at all! It absolutely broke my heart! He was very scared but overall, he did a super great job and now is sporting a new PICC line in his right arm! The 9 month old, Mommy contaminated one is now history! The blood cultures are negative so far! God smiled down on us and blessed my ignorance! Yes, I did a no-no and shouldn't have put the PICC line back in! I had about two seconds to make up my mind..I knew his platelets were down to 9k the day before and he had to get his transfusions....and getting an iv in would be horrible on him for he is a hard stick....I just reacted on impulse! Be it wrong or whatever, it was done. I'm still reeling from it all! Thank God for my insight on not going the evening before......we would have been there all night long with no drs available for consulting..Thank God Nicholas' blood isn't contaminated! Oh, that would have broken my heart to think I could have caused it!

We woke up this morning with Spencer running a 101.1 temp! He didn't go to school and is home with Nicholas and Frances today! I gave him some meds and his temp came back down. Pray that he gets better soon! I can't stand for him to be sick either! His lungs sound clear but he is really congested! I'll be taking him to dr if he gets any worse!

Now, on to the others! Pray for Robbie, he is having some complications! I don't know why I didn't call them while we were there! I just didn't think I guess! Sorry Brenda! I just wasn't thinking straight! We will try to get in touch next time I'm there.

Praying for all those taking treatments. Nicholas did start the Aranesp without any complications! Pray it will work! We should see some results in 2 to 6 weeks! What a long wait! But will be worth it if it works!

Praying for Miracles,
Donna

Saturday, January 21, 2006 8:14 PM CST

Hello. Sissy Bear here.
Yes, Nicholas had to go for transfusions Fri. They arrived about 9:30 A. M. While he was in lab for blood work, his pic(sp?) line came almost all the way out; the nurses would not touch it! Donna put it back in. Then an x-ray had to be done to make sure it was in the right place. It was!! Meanwhile, a call was made to Cincinnati PIC Team to determine if it were contaminated or not( it is considered contaminated, so it has to be replaced. They are to be in Cin. Mon. for a new one.) It was 12:00 before they heard anything; he could have the transfusions, but also, had to be given an antibiotic afterwards since it was contaminated.
They returned home at 9:30 P. M. A 12 hr. ordeal!!! My sister was exhausted by everything; Nicholas had a ball squirting water on all the nurses and had them recruiting others who still had dry clothing, even one former student of mine who is working at the hospital as ....hmmm....head of one department, but works in different areas, kinda of like head honcho. Nicholas has no respective persons; if a doctor had walked in, so what?
Needless to say, he made me promise to come by; I went(yes, he has me wrapped around his little finger, too!) and spent some time with him before picking up Spencer at Miss Clara's house. Spencer and I came home, ate chicken with Ranch dressing, and played Hairball Bowling!! Donna problably thinks I am warping her child, but we had so much fun, especially, Spencer. He scores higher than I. Oh, well.
Hopefully, Donna will be back to update Tues. unless Cincinnati decides to hire her!! My sis is something else!!
But, she still needs our prayers for strength, courage, you name it. Pray for a safe journey up there and back. Pray for Nicholas, Jeff, and Spencer, too. Each has his own need; God knows what each needs.
Thanks for all your thoughts and prayers!
Love,
Sissy Bear

Thursday, January 19, 2006 7:16 AM CST

**Platelets are down to 9k, hgb-7.1, hct 20.1, and anc-1066
Yes, transfusion bound.....I think I'm numb.......just functioning.........


Hello,

Well Mary just called and Nicholas is starting to cough up blood. He coughed too much yesterday! Last night, he was really nauseated and cough quite a bit and then again around 1 am. Coughing gets the junk out of his lungs but with low counts it is horrifying! I'm so scared he will rupture a blood vessel.........I know! I need to practice what I preach! I need to Let go and Let God! Yes I know that but the fear of the "What IFs" keeps creeping in through a crack somewhere! Just pray for God to cover my mind with peace and Nicholas with Miracles....

We are getting a cbc today......Probably will have to have both platelets and red cells.....when is the question! Nicholas is very active and seems to be feeling good! Just a little off color and short of breath but he is not acting like he usually does with low counts! It is definitely amazing me! He was actually a little hyper last night! Bouncing on top of Sissy Bear so she couldn't leave! It was funny! He was sitting on top of her and wanted her to talk so her voice would viberate while he bounced! He was cackling out laughing! He is so sweet! We did get to play Hide-N-Peek! He and Spencer just cannot help but Peek when she goes to hide! Tooo funny!

I think Spencer rather enjoyed his day home yesterday! Mary spoiled him I'm sure! Spencer actually slept through the night without crying out one time! Guess who had the nightmares! Yes, Me! The dreams seem so real! I had to make myself realize I had not run over a child! I was so thankful it was a dream! UGH! I woke up at the usual 4 am and checked on Spencer, he was sitting up but not saying anything and then went back to sleep! So did I.

Praying for all going through treatments of all types! Too many to name but Clara is on my heart! She just lacks three treatments now totally and will be free from them. Her counts are falling so she may have to have transfusions too. You never know when you donate blood or platelets who will get them. Please make an appointment and give!

Hear my groans Lord, please......
Donna

Wednesday, January 18, 2006 7:21 AM CST

Hello,

Well, Nicholas continues to run a low grade temp! I'm not sure what is going on! He is irritable at times but for the most part, he is singing to the top of his lungs and being a pure little stinker! We are holding off as long as possible on the transfusions! He isn't acting like he normally does with low hemoglobin! I guess as I said yesterday, his body is getting use to the low counts or he is tolerating them better or both!

I went home yesterday to Nicholas crying his heart out! Spencer had turned the big (overhead) light on and he wanted it off! That threw him into orbit! That kind of irritability is very nerve wrecking! I guess it's by the grace of God I still have hair left!!!

Spencer didn't sleep well last night and neither did I! He is home today and will get to take a nap! Snow or Black Ice closed the schools today. They will have fun today! Mary will have a very nerve wrecking day keeping Spencer from wrestling Nicholas!

Frances came through surgery just fine! PTL. She called last night and said she missed the boys something furious! She has fallen head over hills in love with them. I'm waiting on her daugher to email a photo on Nicholas' namesake! I think if have some of Evan, his first namesake! I'll post it when I can find it!

Pray for all the children and adults going through medical issues! Nicholas' Uncle Darrell is still on Oxygen and just about ready for a lung transplant! Pray for him and his family! I'm trying to talk Heidi into creating a website for them! I'll post it when it is up and running!

Miracles, Lord, we need miracles, grace, patience, and........
Donna

Tuesday, January 17, 2006 7:12 AM CST

Hello,

The boys were in fine form yesterday evening! Nicholas had school and did well! He isn't coughing up blood or anything yet but I'm expecting Mary to call me any moment and say, "I'm suctioning out blood!" Those dreaded words that pierce the heart! He actually was feeling pretty good last night! He was singing and laughing yesterday while playing with a paper plate!! He can be amuse with the simplist of items! He is a hoot! I don't know how on earth he felt like doing school work or concentrating but he did great for Ms Phillis! I have to keep reminding him not to run! I guess he is tolerating the low counts better than before!

Spencer brought home a book that he had picked out from the library. He read it without a hitch! Mouse Paint was the title! We all enjoyed it! It was cute! We also decorated his snow girl! He named her Elisabeth after Marci's little girl! I thought was so cute! I'll post a photo when I get it downloaded! He was telling us that one of the little boys in his class thinks girls are gross! I asked him, "Do you think girls are gross?" He said, "NOOOOO, I think they are beautiful!" Ask and you get the answers you don't want to hear!!!!! So sweet and precious when he blushes!!! Aaaaahhhh, the sweet innocence of childhood!

Pray for all the children in the hospital, taking treatments, or only have cancer to worry about, meaning they have had their bmt and gotten the marrow issues overwith......and cancer is no picnic.

Pray for the Kern family, two brothers died in a car wreck.

Praying for miracles,
Donna

Monday, January 16, 2006 7:28 AM CST

***Platelets are 14k, hgb-7.8, and anc is 640! He is definitely fighting something! Will need both platelets and red cells this week! Probably....


Good Morning!

Nicholas' weekend was a good one! He is still coughing up lots of junk but seems to be feeling better. He is getting up early and going to sleep earlier! He seems very tired! He is also getting petechia on his face so I'm wondering were his levels will be today! I'm guessing his platelets are 16k. Wonder how close I'll be..... according to how they fall, he wouldn't have any at all by today.......His coloring has been a little of everything this weekend! He has been pale, dark around the mouth and eyes, and back to pale. He has also helped take care of me this weekend!

I've been really sick with a sinus infection. My head hurt the worse it has ever hurt. I havn't had any energy and slept off and on all weekend. Thank God Dad was there yesterday to pamper me! He cooked, cleaned, and fed me dinner-on-the-couch! He is a sweety pie! No, he don't have any brothers left for the taking either!

Spencer had to help take care of me too! He would go by pat me on the head, and give me a kiss! I soaked it all up! He is so sweet!! But I've had a time keeping him from bruising Nicholas this weekend! That sounds like he is beating up on him but he doesn't! I'm talking about hugging and squeezing him! Or just plain old playing! Wrestling! Oh! What a weekend! Me droopy and keeping Nicholas from running and Spencer from wrestling him! But I'm FINE!

Like Nicholas told Frances last week........"I'm going to have worse days like this!" Now where on earth did that come from?

Nurse just left, his oxygen sats was 97 and his temp was 99.7! AARRRGGG! I listened last night and I thought his lungs sounded much better! The nurse did too! He has been running a low grade temp all weekend long! He has been digging under his dressing and actually scratching through the clear dressing until it bleeds! He has so many places on his arm, it is hard to find a place to put the picc line securement. He is so sensitive to the tape and sticky dressings, they break him out and it itches! This is a continual battle for me! Keeping his arm free from infection, blisters, and his fingernails!

Please remember all the ones taking treatments or need them, whether its chemo, white cell boosters, red cell boosters, platelet boosters, marrow boosters, mental illness treatments, or faith boosters!

Could you possibly be a faith booster to someone that really needs a prayer partner? IF you have that gift, please join the Prayer Bears and start your ministry today. Adopt a cub and be faithful in prayer for them and their family.

Oh, Jesus, please let today be Nicholas' Miracle DAY!
Donna

Friday, January 13, 2006 7:17 AM CST

Hello,

Well, what can I say! Nicholas lungs were sounding better BUT they do not now! They sound very rough, both of them! He is coughing up more junk during the day and again through out the night last night! Breathing treatment at 4 am this morning! We will have to do more breathing treatments through out the day! He was really blue around his mouth last night and short of breath! He seems to feel ok, just doesn't look well. He was still playing and wanting to wrestle with his Dad again! He does have some bruising on his legs though. Been a week today since he had his platelet transfusion! His last red cell transfusion was on the 19th! We will get another cbc on Monday.

Yes, I went to eat lunch with Spencer yesterday! He was so happy to see me! I, then read them a book! "Tom and Alley Go To The Doctor!" Just the subject I wanted to read! I could have written the book!!!! Their subject this week is DOCTOR! One thing they have to do is let Spencer hold up the letters so the others will get a chance to say what they are! His teacher is starting him in a accelerated reading class! He gets to school early and she is going to use that time to let him read! He is reading everything he can get his hands on! The children decided they were going to fire me from my job so I could work at the school! That was too cute! They are all so precious!

Now on to the prayer request! I have an unspoken request and the Lord knows all about the situation. Please remember this young lady in your prayers and her family too. Pray for all the children and adults taking treatments! Also, Frances will have surgery next week so remember her! Mary Bear will sit for me! Nicholas told Frances that he would miss her and that he always prayed for her when she wasn't there!

Lord, we don't even know what miracles to ask for! Hear our groans!
Donna

Thursday, January 12, 2006 7:28 AM CST

Good Morning,

Well, Nicholas coughed too much through out the night last night! I don't know what is going on! His temp seemed to disappear! Thank you for the prayers! His blood culture was negative at 24 hrs, and his cbc came back with his hemoglobin at 8.1, platelets at 76, and ANC of 1344. We will get another on Monday and will probably start the medicine then too. We are trying to get both at the same time and the stability of the medicine is the problem! I'll have to talk to the pharamacy myself before I can get everything coordinated. Overall Nicholas is pale but energy level seems ok. He was dancing around last night and wanting to rough house with his Dad! He will laugh too hard to do anything though! He cannot do a thing when he is tickled! He will laugh and get all of us laughing! I LOVE to hear him laughing! So mischieveious, eyes sparkling, and giggling to high Heavens when he feels good! Rotten! and sooooo lovable!

Spencer slept for about 10 hrs last night! He was a little grumpy yesterday evening! He came home with his Mamaw and Papaw yesterday! I knew he would want to! And I knew they wouldn't be able to resist him! Mamaw read them a story and all the children wanted her to read to them too! It was precious I'm sure! I don't think Spencer wanted to share her though! He just had to read to her when they came home! He is so sweet and precious!

Mamaw's glucose last night was at 320!!!!!! Pray that she will do better! She loves sweet stuff! No wonder I do to!

Pray for all the ones taking treatments. No one knows the horror or worry until you go through them on a personal level! Pray for options, miracles for the ones like Nicholas that do not have any.............

Praying, begging, pleading for Miracles,
Donna

Wednesday, January 11, 2006 10:30 AM CST

Hello,

Nicholas is still running a low grade temp this morning. They came yesterday and did another blood culture and a cbc but I didn't call before I got on here this morning! Nicholas has been IM with Jo for a while! He loves those smiley faces! He will put up the silliest ones! He is too cute! He seems to be feeling somewhat better though. Still congested some but on the mend slowly. He had a tooth that took forever to come through the gum, maybe the temp is from that! Rather it be that than an infection in the blood! Oh if it could be simple like that!

Spencer's lunch date today is with Mamaw and Papaw. Mamaw had fluid taken off her knee yesterday and is suppose to stay off it! She just had to go see Spencer though! That's Mamaw for you! She would do anything for her grandchildren! She is the best GM in the world! All her grandchildren can say that! She has kept them all at some point or another! Nicholas is probably the least but that is because of his condition! He has never stayed all night down there. Spencer has and LOVES it! Why is Mamaw and Papaw's the best place on earth?

Please remember Clara as she goes for her chemo today. She isn't feeling well and sort of nervous about it. She has been so blessed! She has had very little nausea with all these treatments! The GCSF causes her some joint and hip pain but overall, she has done really well. Nicholas has never complained with anything with the GCSF, and he has taken it for 1.5 years!

Well, we will probably start the Aranesp next week....keep praying.....
His Highness is beckoning! I have to get his bath over with and he is going to tell me a bear tale!

Blessings and Bear Hugs,
Donna

Tuesday, January 10, 2006 8:57 AM CST

Hello,

Nicholas didn't rest well last night either. He was chilling this morning and not feeling well. I still wonder if we are on the correct antibiotics! He's feeling better but still not 100 percent! He is droopy today.

We will get another cbc on Thursday. AND begin Aranesp, a medicine to stimulate the marrow into making red cells. This hormone is actually made by the kidneys, erythropoietin, and it stimulates the marrow to create red cells. Nicholas has only one kidney! Brainstorming, I requested an erythropoietin level on him and it was high! Who knows? But we are giving him more to see if it will stimulate the bone marrow! It can cause high blood pressure too though. Pray it works without bad side effects. Yes, this is another route to try to get his hemoglobin up and his red cell count up. Praying that it will create Platelets too! I know it doesn't normally but I AM praying for miracles here! Why not platelets too? I told you, desperate parents will do anything! Including wonderful crazy side effects such as platelets!

Spencer enjoyed his Dad eating lunch with him yesterday on his first day of "Featuring Spencer Week!" Today, Mary Bear will visit with him! He will enjoy that too! It is so sweet to have everyone doing this, I appreciate you Mary! Mary will take photos too! Dad didn't! I knew I should have been there!

Pray for miracles for Devin, Jay, Will, Katia, Julianna, Khalita, Will L., Robbie, John, Rodney, Maria, Jo, Jacy, Alex, Nate, David, Alexis, Madison, Joanne, just to name a few......too many to even start naming! But we all need a miracle in some shape, form, or fashion.

Blessings and Bear Hugs,
Donna

Monday, January 9, 2006 7:28 AM CST

Hello,

Someone donated platelets!!! Whooo Hooo! On 1/4/06! Thank you! They were running low the week before Christmas and called Sissy and Daddy Bear to come and donate.. They went the Fri after Christmas. When the transfusion was overwith, the temp had dropped and black ice was everywhere! There was an accident on this big bridge but we made it home fine. Nicholas actually coughed up blood after we arrived home. I'm not sure what is going on. He is still coughing up some thick secretions. I wish I could get it all out so he wouldn't get so nauseated! He will cough and then start gagging. He doesn't need any bile in his esophagus or throat! The gas just doesn't come back out his g-j tube as well as it did with just the g-tube. I get frustrated when I cannot get him any relief!

This week Spencer is the featured child! I sent some photos and one of his favorite books, "Kittens First Full Moon!" He laughs all through that book! He will have some family member to eat lunch with him all week too! That will thrill him to pieces and spoil him! I would love to be there all week!! I guess I have to share though!

Kim, you made my evening yesterday when you said you had accepted Christ in your heart at Church! You asked if we felt the earth shaking! It wasn't long after that, the wind picked up and it slapped the electrial wires together and knocked out the power a couple of times. I couldn't help but laugh, I knew you were still talking ninety miles a minute! Thank God!

Pray for the family of JC Dingus and Maude Ann Stanley. It's hard to battle cancer but JC is now Cancer Free! No more pain! Just resting in the arms of Jesus.

Praying for miracles,
Donna

Friday, January 6, 2006 6:24 AM CST

***Nicholas is coughing up blood this morning. I hope and pray someone donated platelets...

Hello,

CBC came back with his platelets down to 18k! I was guessing 15! His Hgb was 9.2 and his anc was 1512. Yes it is higher than normal, but so is his white count. His Eosinophils are 4 percent too.....Also his glucose was 116, a little high! Just something else to worry about! We will definitely have one of those weekends I described in an earlier entry! Pray that all will be well. If he starts coughing up blood, I would have to take him in to be transfused.

We have given him Androgel for 2 months and not had any good marrow response. We can try it for another month or we can try something else. We will probably go for something else, I just can't handle puberty at this point. Well I could if we were seeing some good positive results in his marrow! That would be worth the world!

Have you ever needed something so badly that you would do anything for it! Yes, even cut off an arm or leg for it! But that won't help! Yes, even die but that won't help. I don't need it for me, but for my baby. He needs another miracle. Oh, if you could hear him laugh, you would be searching the whole wide world over to get him his miracle. God is the provider of miracles. Please pray, petition, beg, fast, plead, become a Christian or whatever you need to do to reach the throne of God on our behalf, to help us pray for some time, well, actually lots of time!
I just love him so much! He is my baby! Don't get me wrong I love Spencer too! I couldn't ask for better boys! I love them both so much it hurts.

My Aunt Juanita doesn't have to have surgery right away. They are going to watch it??? Doesn't sound right to me but I'm not a dr! Pray for her.

Pray for all the ones on treatments. Pray for the sick!
Pray for miracles.

Pray, Pray, Pray,
Donna

Thursday, January 5, 2006 7:33 AM CST

Hello,

We are getting another cbc today whenever the nurse gets here! I came home yesterday and he looks really pale and had lots of petechia! I'm sure his counts are low. I will post the results whenever I can.

I also got the culture results back and there were only two meds he could be on! Thank God we were on the correct one! That was divine intervention! God is Good! Amen!

Sorry this is short! I'll spare you today!
Don't ever forget to pray for us and all the others! Praise God Little John and Robbie are both at RMH!

Blessings and Miracles,
Donna

Wednesday, January 4, 2006 7:45 AM CST

Hello,

Oh, I cannot look at that series of photos without smiling! Now, you can actually see what a time I have!!!! Nicholas will burst out laughing at the silly things that Spencer does! They are such super hams!

That will help put a damper on this update as I'm still fuming! It amazes me that I had to hear from Cincy that Nicholas' blood culture was positive! The one they took in the hospital!! It makes me furious! Thank God for Dr Harris changing the antibiotics before we left the hospital! He just knows the immune suppressed child needs those high powered antibiotics! And he is getting ready for retirement???? I DON'T think so! Who on earth could I depend on then? He had better be training someone else that is for sure! The more we deal with him the more I admire him! And for dedicating your career to an orphan disease. It has been an honor to meet you professionally and become good friends on a personal level. I know you have been tolerant to us parents, as frustrated as we get most of the time!, and been a wonderful teacher. Thank you from the depths of my heart Dr. Richard Harris for your love and dedication you give to these children and the families. Nicholas thinks he is Dr. Harris only patient! And another little one is trying to walk in Dr Harris' footsteps! We were playing "Hospital" again and Spencer was the dr! Now, we hadn't mentioned Cincy at all and Spencer put on the stethscope and said to Nicholas, "Now, I'm Dr. Harris!" What an honor! He has only been to his local pediatrician! From the mouth of babes........

Well, I guess it was just as well that I went on another tangent! Ha! Now that I've cried my eyes out, I feel better! Just all those tears are inside and now I'm swishy swashy! Can you tell I'm tired? Nicholas was very restless last night! He woke me up several times, twisting and turning, yawning, and coughing a couple of times. He is very nausteated and threw up a couple of times this morning! He actually ate a little fudge last night but what is in his tummy looks like clabbered milk! I hope and pray it isn't the formula! That would mean a g-j tube change! We have to go back to Cincy this month for a bone marrow aspirate but that has to be scheduled!

Nicholas' lungs actually sound much better! Thank God! Thanks for your prayers too. He was really droopy last night and would just lie down in the floor. It may be one of his antibiotics though.

Spencer's first day back at school! He was really looking forward to going back. He missed the children! I told him "NO FLIRTING!" which brought a huge smile to his face! Where's my camera!?

Pray for my Aunt Juanita, she is scheduled for surgery in the near future, not sure of the date. Pray for Maria. Pray for all the children going through bmt or getting treatments. They are so brave and the best heros in the world!

Robin, your tribute will come at a later date! Ha! Love you too!

Blessings and Bear Hugs,
Donna

Tuesday, January 3, 2006 7:44 AM CST

Hello,

Nicholas' cbc came back ok, platelets were 51k, but it hasn't been a week yet! Hgb was down to 9.5, and his anc was 432. Will have to do another cbc toward the end of the week. I'm just wondering if we could hold off until Monday but really don't think we can. IF his counts are just hovering above transfusion, it will be another very nervous, heart stopping, hair pulling, admonishing, "Don't run, don't rough house, Spencer! Nicholas' counts are dropping you cannot wrestle with him!, Don't hit, don't push, don't TOUCH!, Don't BREATHE! weekend! UGH!

And to think some people say they don't let FA rule their lives! Well that isn't the case at our house! We have to let it rule for now! I'm glad some can do that and be normal but "our normal" is quite different and it's all because of FA. Nicholas is still just the sweetest little imp that ever lived and Spencer is the best brother he could possibly have. They are just the best in my book!

I did forget to mention Nicholas has another namesake! I was hoping to have a photo to announce it but will post one later. His was born on 12/30 at 32 weeks and was 4 lbs and 7.7 oz, 18.5" long! His name is NICHOLAS EVAN MILLS! His Mamaw is Nicholas' sitter, Frances. Frances' daughter, Amanda and her husband Ralph are the proud parents to this precious gift of God. He is doing well and lungs are ok. He is nursing as of Sunday and will be home in a couple of weeks! The Blessings and Miracles are still flowing, we need to realize them.

Also we have another addition to our family! My nephew Eric got married on Sat 12/31! Kara Holbrook was the bride and the wedding was beautiful. Nicholas really enjoyed trying to make Eric jealous on Christmas! Welcome to the family Kara!

Now for the prayer request: My Aunt Juanita fell and broke her shoulder. Please pray for her during this. Maria really needs your prayer. Pray for the families of the miners that are trapped in the mines in West VA.

I'm fine! Are you?
Praying for miracles,
Donna

Sunday, January 1, 2006 7:19 PM CST

Hello and Happy New Year!

I think our motto this year will be....Get it Fixed in 2006! Whatever is wrong, make it right! Whatever is sick, make it well. Last year it was "Strive to Survive in 2005!" and it has definitely been a struggle! We did survive by a hen's tooth! Whew! What a year!

Nicholas is still on antibiotics and I just happened to call the lab in which they couldn't tell me anything! ARG!! I finially came up with a solution. I told her all the meds he was on and she then compared the sensitivity list and called the dr. He THEN called me and told me that Nicholas is on the wrong meds! He had been notified earlier and said, Oh that's ok, he is on antibiotics! Yeah right! BUT my question was is he on the RIGHT ones?? No, he isn't! He will have to be put on something else now! Just as I figured! Niw, what would happen if I hadn't called? Yes, back in the hospital! Not unless we absolutely have to. I counted the other day and he has been in the hospital either out patient or in....45 times! Averaging close to once a week! Not days, just times! He has spent several weeks in! I'd hate to count the days!

Nicholas is still coughing up major junk! Feeling better but lungs still sound so junky. We are getting another cbc tomorrow! Will update the results when I can. We aren't expecting anything to be low but he is having bouts of being dusky in color or really dark around his mouth, noses, and eyes.

Spencer has been just fine...a little stinker as usual! He is so smart and reading everything he can get his hands on! They have a little game on the computer that he has mastered in no time! He can create sentances, adding, subtraction, and just have some fun too! Making pizzas using fractions! Sometimes you don't have enough time to get all the ingredients on and the little dog eats it! He will do some wrong on purpose to watch him eat! And the dog burps too! Really educational!

Remember to pray for Maria, she is really having a rough time fighting the pneumonia and her g-tube is infected too. She will have to have it removed and replaced. Please pray for her miracle as well.

Get it fixed! We know who will do the fixin', so please help us pray.
Donna

Friday, December 30, 2005 7:54 AM CST

Hello,

We are home and on antibiotics! Let me start over! Tuesday, we had to go for a chest xray. I went home and couldn't hear any air moving in his left lung! Whew! That was scary. X-ray didn't show anything wrong but I could tell there was some haziness in a couple of areas that looked more viral that bacterial. Wednesday morning, Nicholas started coughing and there was a clot of blood in his trach filter, it's called a thermovent. I called his local pediatrician and he ordered a platelet transfusion. After the platelet transfusion, we went home and a couple of hours later, he was chilling and then his temp spiked to 101.7d! I loaded him back up and to the hospital we went! We stayed overnight and the portable xray was read by the er dr and he said there was some infilrate in the right lung base. Nicholas continued to cough up blood until last last night. So far this morning, he hasn't. I'm so thankful that he is feeling some better. He is a ham! He has all the nurses wrapped around his little finger! They cater to him! I guess he is just a little magnet!

Spencer really missed us! It was so cute the way they hugged and played when we arrived home! Spencer was happy we were home! He held Nicholas hand and just bent over and kissed it! So precious! And they danced! Spencer was a little over zealous and Nicholas was laughing so hard he could barely stand up let alone dance! Tooo Funny!

They have really enjoyed seeing Mike, Robin, and Brandon! Nicholas would sit beside of Robin to make Mike jealous!! It was hilarious! Then, Mike came over and sat beside of me which brought out the bear face and the growling! He was so jealous! We all laughed at him! He loves to pick on Mike! Brandon would not let me take a photo of him! He looks so cute and sweet in his little glasses!

I'm very tired and exhausted which is needles to say! If you ask, I'll say, "I'm fine!" Racquel told me Yeah right, she knew how fine I was! I told her I was fine.... Forever In Nicholas' Enchantment!

I just talked to Frances and she said Nicholas was feeling well at all this morning! Please pray for him. He says that he is tired! He is also missing Mom! I spoke to him and he puckered up to cry! He sounds really short of breath. I'm getting really congested too. I do not want to give it to the boys, so pray it goes away rather quickly!

Praying for all the sick and broken hearted.
Blessings and Bear Hugs,
Donna

Tuesday, December 27, 2005 11:49 AM CST

Hello,

Well, Nicholas isn't feeling well. I called to see if we could get the cbc done today. They did go and get blood. Now, they are wanting a chest x-ray too! His O2 sats were 94 percent. He is never that low unless he has pneumonia. Just found out his platelets are down to 16k! Will find out the rest when it gets faxed to me. I was guessing 20k but it is lower than I thought! You know what? I think I'm just exhausted! To stay on a continual, never ending roller coaster is wearing me down.

He has been really sick, probably the sickest he has been in a while! But yesterday he was feeling great! We just never know what to expect! One day he wil be fine then the next day he is quite ill. I guess he will be back on antibiotics again. Never off of them totally hardly ever anyway!

Praying for miracles!
Donna

Monday, December 26, 2005 1:34 PM CST

Hello,

Where on earth to begin?? Friday, Nicholas felt really bad. He had a cold, with runny nose and eyes watering. I was worried he wouldn't feel up to Santa! But I guess you figured it out that he did and had a wonderful visit! I think he put Santa through the 3 degree! Ask him everything you could think of! Raising up his sleeve, he exclaimed, "I didn't know you were human!" "Why are you wearing a different belt than last year?" "You know everything don't you!" Santa said, "We'll I don't know when Jesus is returning!" "Or who is going to Heaven!"
Nicholas said, "And you don't know when we are going to Heaven either!" He stumped Santa for a moment! They sang songs together! Santa read them a story! Santa had a grand ole time! The boys did too! According to the photos I took, I think Sissy Bear did too!

Santa had them to sit on his lap and tell him what they wanted! Nicholas said "Three things, a batmobile, police car, and fire truck!" Hey, one out of three isn't too bad!
Spencer shocked us all when he said, "A real live monkey!" Then, he burst out laughing! He was too excited to say anything! We all got a big laugh out of that! I definitely missed that one!

Sissy Bear asked Spencer to take a glass back to the kitchen and there he stopped in his tracks! He smiled really big and ran back to tell brother..."There's a batmobile and a Spiderman bike!" He was talking so fast no one could understand him! It was priceless! At Nicholas first glimpse of the batmobile, his little arms went in the air and said, "Whoooooo Hoooooo! Just what I wanted!" They both tried to get in it, first one then the other! They would switch out between the bike and batmobile! We were really worried that the bike was too big for Spencer but it was perfect!

Well overall, we were really blessed to have everyone at our house except for a few. Mamaw had a cold and didn't feel like coming up! We really missed her! The little bears racked up! They both got three blankets! Thanks Marci for the Batman blanket and Buzz Light Year blanket that you made, they were darling! Sissy Bear got them Bear blankets and Aunt Bonnie did too! We were all well blessed and thankful that all was as well as it is.

Nicholas is feeling lots better today! Still really coughing up lots of junk but is fiesty and picking on Mom! He is a little imp! Holding on to the wash cloth with his feet so I couldn't use it! Eyes sparkling!

Oh, he looked really bad when he felt the worst, really dark around his mouth and eyes but is now a little pale and getting petechia on his face. I know his counts are dropping again and we are getting a cbc on Wednesday.

Good news on Robbie, 98 percent engrafted with donor cells! Whoo Hoo and Praise the Lord! I know they are estatic!

Wishing you all a perfect last week of the year!

Praying for all families that are in the hospital during Christmas! Pray for Maria, she is too! Thanking God she has pneumonia instead of a mass!

Blessings and Bear Hugs,
Donna

Thursday, December 22, 2005 6:44 AM CST

Hello,

Are you ready for Christmas? Is Christmas ready for you? The boys are ready for Christmas! They opened some of Marci's packages and I couldn't hear myself think for the squealing! They were thrilled! They loved the colored hot chocolate! Red, Blue, and Green! Cool! But then after I made some, Spencer wouldn't drink it! Too funny! Didn't look like chocolate to him! Wouldn't even taste it!

They had received their stocking from school too! They were full of candy! and lots of toys! Spencer was wild after his party at school and took a late nap! Yes, you guess it! Late going to sleep! Nicholas coughed some but kept making noises like he was chilling this morning. I checked him and he wasn't though. Not sure what is going on but he is coughing up some nasty looking sputum! Enough said!

Babbles the clown called and wants to surprise Nicholas and Spencer this evening! I can't wait! They will be thrilled! She is so sweet and precious! Spencer was reading her sticker, "Sharing God's Love Through Laughter" last night! They will love to see her again! Then Santa is coming Friday night! Yes, their personal Santa! He knows we cannot get Nicholas in a crowd and visits our house early! Isn't he sweet! Yes, I have to butter him up! I need to get some brownie points in too!

Pray for all the ones that live at least 50f their time in the hospital or traveling to and fro! It's not fun.

Praying you give yourself the best Christmas gift ever! The REASON for the season! Just say YES to Jesus!

Praying for a miracle.
Blessings and Bear Hugs,
Donna

Don't forget to join TEAM NICHOLAS and send a donation in to FARF, 1801 Willamette Street, Suite 200
Eugene, OR 97401
Thank you!

Wednesday, December 21, 2005 7:17 AM CST

Hello,

I have a little rosy red cheeked imp! Sitting in Melinda and Rhonda's lap! Snuggling with them and telling Melinda that she has beautiful blue eyes! What am I going to do with him! Spencer had a ball playing with Alexis and Austin but Nicholas was just too busy! Then Mary came and brought them more gifts! Thanks Galz!

Thanks to all that have sent gifts! He has received them from Kansas, Missouri, Connecticut, Ohio, Georgia, and California! Wow! I have a lot of thank you to do now! Thanks everyone! They are so excited and ask to open them every day! They have 365 days of Christmas anyway!

He was talking to Marci's husband, Charlie and told him that he was in love with his wife! Charlie, you are going to have to share! At least he told you! Honey, he was laying it on thick the other day to her! Telling her he only loved her! Whooo! I need to talk to that boy and tell him that a "Smart Monkey doesn't mess with another Monkey's Monkey!"

Ok, I created a masterpiece! Rudolf! I'll post the photo later! It is adorable! It's for Spencer's Christmas party today! The children will love it!

One thing I do want to ask of you. Please send a donation to:
Fanconi Anemia Research Fund, FARF
1801 Willamette Street, Suite 200
Eugene, OR 97401

Put "Team Nicholas" in the memo and it will go in honor of him. That is what I want for Christmas! The future of FA children depend on research! If FA was federally funded and not an orphan disease, we wouldn't be in desperate shape with Nicholas! WE NEED A MIRACLE! Please help us find our miracle! Please help by being on the Nicholas Team! Thanks from the bottom of our hearts!

Praying for miracles!
Donna

Tuesday, December 20, 2005 7:05 AM CST

Hello,

I just have to share a precious prayer with you!

Lord, behold this wonderful family and in particular your beautiful child Nicholas. Protect him from any more assaults on his body, infuse him with your life-giving bread of life and cup of salvation. And, Lord, could you give us a CLUE?!?!

h

H, I hope you didn't mind! Any prayer for my precious is fantastic but I did get a chuckle out of the last part!

I realize God's divine plan far exceeds our puny hopes, dreams, and wishes! He knew Nicholas and Spencer before He formed them in the womb! He knows All. He has great plans for all of us. We are all important in His sight! He looks far deeper than the surface. He knows us inside out! He knows. "Thou knowest" was one of the sermons my Dad preached during my pregnancy. I don't think I'll ever forget it and each day brings a new meaning to it.

We need to get our hearts in tune with God's plan. Forget the fuss of Christmas and wrap the true meaning in our arms and hold it close to our hearts. Something so precious that it cannot be taken away by anyone or anything. No one knows what is in our hearts but Jesus. That is where He wants to abide, in our hearts. The best Christmas gift you could ever give yourself. Life eternal.
It's easy as ABC, Accept His love for you, Believe He came, lived, died, and arose the third day, and Confess your sins and confess to others that you have accepted Christ as your personal Saviour. Heaven will be your home! Who wouldn't trade Heaven for a lake of fire? Happy wonderful life with Jesus to continuous pain and torture. Pray today and begin a new life for Jesus. Make this Christmas the merriest one ever! Celebrating HIS birth and your re-birth!

Praying this journal sparks your heart and God blesses it in your life. Without His blessing, it's just words on a screen. Praying it will triple or bless your heart a thousand times over! Like the blood transfusion that Nicholas received last night. Pulsing through his little veins, new life. Bringing joy, rosy red cheeks, and a smile that would melt anyone's heart. Precious donors donated the blood to help others. Thank you from the depths of our hearts for the time and your love.

Praying for all the ones receiving treatments, transfusions, or transplants. Thank God He has them all covered under His blood.

Praying your decision is Life Eternal in Heaven,
Donna

Monday, December 19, 2005 7:06 AM CST

**Platelets down to 11k, hgb-down to 7.5! He will probably get both, platelet transfusion and a red cell tx too.
Do they transplant hair? I'm going to need one too! He cannot be falling in the floor today! or running, or rough housing! Oh Lord, Spencer was trying to sit on him last night! Nicholas was cackling out laughing! I was panicking! I knew they were getting low! Where on earth is our miracle Lord? We've begged, pleaded, fasted, and prayed and are still waiting.



Hello,

We had a wonderful weekend. No one had any major mishaps! We are trying to get ready for Christmas but its a slow process! The boys have thoroughly enjoyed playing with the wrapping paper! Nicholas will tear it up into little pieces and tape them with a ton of tape! It was funny! He thought he was doing something! I just can't figure out what! He had a ball doing it and a huge mess! Spencer likes to get a big piece and run around with it! Wrapping paper! Go figure! I think that is an indication that they have too many toys! Hmmmm!

Nicholas does get blood work today. He has a huge bruise on his elbow and several on his legs. He also looks very dark around his face! I have no clue as to what his counts will be. He seems a little short of breath and bruising somewhat so he may need both transfusions. No indication that he is in desperate need though.

Spencer was pretending that he had two babies, one was a lion and the other a tiger! He had them wrapped into a blanket and was taking them to Dr Nicholas! Nicholas would get too tickled to do much but he finally asked some questions! I told him that they were running a temp, coughing, and I was afraid they weren't breathing correctly. He said, "Well, we may have to keep them overnight. We'll give them some breathing treatments and get an x-ray!" Sounds like a true dr to me!!!! Get that hospital stay in first and then talk about what tests to do! I think I just let him self diagnose next time! Whew! He has been to dr one time too many, don't you think?

Remember all the ones on treatments! Rem. Clara and the family of Wayne Lawson, his funeral is today. visit/claramoore
Yesterday is Robbie's 8th birthday! and he is in the hospital for his bone marrow transplant! His mom has had shingles! Pray for them.

Did you invite Jesus to celebrate His birthday at your house?

Blessings and Bear Hugs,
Donna

Friday, December 16, 2005 8:32 AM CST

Hello,

Well the energy level is tapering off! Don't know what caused it or what is making it dwindle away. It sure was nice while it lasted! Nicholas continues to act somewhat ok but looks paler. He was also short of breath last night too. I guess he thinks he still has oodles of energy but it just isn't there. He never complains and this respite has been good for all of us. He hasn't been depressed or talked of dying!

Rag Doll Sales from CA sent Nicholas a big Teddy Bear! I needed the box it was in so I let him open it! It is adorable! I think this is the the one that Joanne tried to send Nicholas but they wouldn't let her pay for it! That is so sweet and precious of them. Thank you! I'll post a photo when I can.

Spencer got off the bus and asked Frances, "Is Nicholas ok? I sure missed him today!" He is a worry wart! He didn't want to go to school yesterday and I think it was because he was afraid for Nicholas. He has been home for 5 straight days and loves playing with Nicholas.

With Nicholas' counts dropping, they are making me a nervous wreck! I continually caution them! With Nicholas feeling better too! He will run and just fall in the floor on his knees! Bruising! Ahhhhh! Mom may just loose it before this is over with! I won't have any hair left!!!

Trossie's catherization did happen and they had to put in two stints! They also burst an artery while doing the procedure! The medicine didn't relax her at all and she could feel the pain and feel them working in her heart! Shew! That is enough to make mine hurt! She is now home and doing well! Thank God!

Pray for Clara's nephew, Wayne's family. He was in a car accident and on life support. They had to make a decision this morning to take it off. Pray for them. Also, another one in the accident, Tommy, needs prayer too.

Pray for the Kurks! Some broke into their home while they were sleeping and stole Eli's stuff. They aren't over his passing now have lost more...

Good News, Robbie is doing super! Whoo Hooo!

Praying for peace,
Donna

Wednesday, December 14, 2005 7:46 AM CST

Hello,

Energy is still high! Praise the Lord! I haven't seen this much energy that has lasted this long in quite a while! The rest of us are droopy but Nicholas is going strong! He is getting pale but energy is good still! He is so hyped up he can hardly talk on the phone!

Spencer goes to school today on a snow schedule! He is suppose to have a field trip tomorrow but that may not happen! He didn't sleep well at all last night! I played musical beds again last night! I think I'm giving up on trying to get any sleep! *Yawn*

My sister-in-law does have a heart catherization today! She does have a blockage. Please pray for her and the family. God's peace that passeth all understanding be with them today. I am in tears that I can't be with them but I can pray! and be there in spirit! They know I love them anyway!

Remember all the ones taking treatments. Pray for all of us!

Blessings and Bear Hugs,
Donna

Tuesday, December 13, 2005 6:58 AM CST

Hello,

Nicholas counts are up! The cbc showed his platelets to be 107K!! Whoo hooo! I know he was just transfused on Thurs but I can still rejoice that he has held on to them this long! His hgb was down a little to 8.2 and his ANC was 606! On Monday! I am happy about that too!

He was rotten yesterday! Feeling too good to pay attention to the teacher! Being rude and cutting a tantrum! He was a little nervous about Spencer being there for one thing! And, Spencer was a little too loud too! I came home and gave them both a good talking too! I told him priviledges could be taken away from him if he didn't mind! "I'll do better on Wednesday Mom! I promise!" was Nicholas' reply! He then sort of pouted and hid under the table! Pouting! He said, "Are you really going to take priviledges away?" while puckering up to cry! What could I say? I said, "IF you don't do better, I will have too!" Then, he was all smiles and laughing! Yes he has us wrapped right around his little fingers! How can I punish him when he hasn't felt this good in forever? I just can't! But on the other hand, I can't let him be rude! He will have to apologize to her first thing on Wed! Oh no, I remember my Mom making me do that! Here I am, becoming my Mom!!! Thank God, she loved me enough to discipline me! Thanks Mom! We love you too!

Spencer finally settled down too! He was a wild child! He is definitely picking up some things from school! Woe is me! He is home today because of snow!!! They will have a ball today too! I have a feeling they will be better today! If not, then on the warpath Mom shall go!

Please remember Trossie, my brother's wife. She was having chest pains all weekend and went to dr yesterday! They put her in the hospital for observation! Ekg was a little abnormal and enzymes were off! They are may send her for a catherization if ekg is still off this morning! Please remember the family, I'm sure they are all torn up about her. Her blood pressure was too high!

Remember Clara, if her counts are ok, she will have another chemo treatment today. Remember all the children and adults on treatments! Robbie's bmt is today! mi/robbie, go by and wish them well! tn/littlejohn just had his too. Remember all the families going through this or similiar treatments. Also remember Jeff, he has a severe headache and ran a temp all night! Pray for him, he went on to work!

Praying for miracles.....
Donna

Monday, December 12, 2005 7:39 AM CST

Hello,

Nicholas and Spencer have had a good weekend! There is no school today and I'm sure they will have a ball today! Nicholas is going full blast! Singing to the top of his lungs! He is feeling GREAT! Sissy Bear said, "He is terrific!" We haven't seen him this energetic in forever. Do I dare hope the Androgel is working?!! Do I?? Oh, what a wonderful gift that would be! It may actually get me in the mood for Christmas!

I'm just not in the groove! I want to do so much but I can't get little Willy in gear! I'm definitely in a major slump! I can't seem to get anything accomplished! Oh well, I will sometime! I have too!

They did another cbc this morning and Nicholas had a bad gas spell in the middle of it! Spencer told the nurse that he had to stay in there and help take care of his brother! He is so sweet and precious! He is definitely worrying about Nicholas too much!

Nicholas' blood culture that was taken in the hospital isn't postitive! I'm wondering now if they are going to keep him on the antibiotics for 10 days or not! What a waste in meds if they do not!

Remember all the ones taking treatments of some sort! Pray for Little John, and Robbie gets his transplant tomorrow!

Praying for Miracles,
Donna

Friday, December 9, 2005 7:15 AM CST

Hello,

We did get a platelet transfusion and got home around 8:30 pm. We walked into the Lab and guess what the news was! His last blood culture is positive for something! ARRRRRGGGGH! Here we go again! They got orders to do another culture before the transfusion. Well, they did that and then he received his transfusion. His temp was 99.1 when we arrived but after pre-tx meds, his temp went down. His respiratory rate increased some during the transfusion too. He really had a rough day yesterday. He was so weak and didn't even want to take a bath! He finally felt better up in the day!

I called home and Spencer wasn't talking much at all! He was so sad, he was missing Mommy. I told him that I would be there to snuggle buggle with him before he went to sleep! He was so hyped up playing with Nicholas that he didn't go to sleep until really late! I woke up around 1:25 am and got back in my bed and at 1:31 am, Spencer woke up and said, "Mom, get in bed with meeee!" So back to his bed! I played musical beds all night long! He finally rested from 4:30 on! Now, I need a really big nap!

The boys are really looking forward to Santa Bear coming to the house this year! He had better be rich is all I can say! Nicholas is expecting toooooo much! Spencer says, "Whatever you want to buy me is fine with me Mom!" Doesn't that just break my heart? Yes! It does!

Remember all the children in your prayers, we have had several cubs to pass away and it is so heart breaking. Pray for those families and the ones still struggling.

Blessings and Bear Hugs,
Donna

Thursday, December 8, 2005 7:04 AM CST

**Have to get a Platelet Transfusion this evening! Pray it doesn't sleet!
This also means extra fluids so hopefully he will urinate better too!

Hello,

I went home and could tell Nicholas wasn't as puffy! They did the blood work a day early and did kidney function tests too. I don't have those results yet but do have his platelets and they are down to 13k, hgb down to 8.7. Big change in just two days! He seems to be just as rotten as ever! He woke up this morning at 5 am and asked if it was early yet! Yes!!!!! He coughed through out the night more than usual last night too.

He had school last night and Spencer played on the computer while he was in school! Mamaw and Papaw came up, they forgot that Nicholas had school on Mon and Wed! Papaw's test came back ok that he had done yesterday! PTL. My cousin Sherry's test did too! We have lots to be thankful for this morning!

Sissy Bear and I met with Spencer's class for lunch yesterday! Spencer was thrilled and surprised to see Sissy Bear! He threw both his arms around her neck!!! He was grumpy when he came home from school though! He looked so tired and sleepy! He didn't want to go to sleep last night! He did sleep good once he konked out though! He is so sweet and just the best little brother that Nicholas could ever want!

Nicholas will pet on him and say, "I love my Bubby!"

Remember all that are on treatments or clinical trials, finished, or needing them. Pray for the entire family, not only the sick one!

Blessings and Bear Hugs,
Donna

Wednesday, December 7, 2005 7:19 AM CST

Hello,

Nicholas isn't urinating as well as he should and his face and even his eyes are a little puffy! After giving him more fluids, he seems a little better though! I'm so scared its the Androgel! This makes twice this has happened!

Spencer is going on a field trip today but I am meeting them for lunch! I told him last night and mentioned it again when we were lying in bed! He said, "Mom, stop talking about it again! We need some rest!" Mr. Opinion! Awwwww, he is growing up too fast! He slept well but I keep checking on him everytime my eyes were open!

It could have been due to some tea and chocolate cake that was so yummmy at our girls Christmas dinner last night! I kept waking up and felt jumpy inside! That is how Nicolas described himself Sunday! He kept saying, "Mom, I feel all jumpy inside!" He was scared about his trach change! I had a really hard time with it too! No wonder he felt jumpy later in the evening too!

Nicholas and Spencer really missed me yesterday evening! I was putting on Nicholas pjs and he kissed my chin, nose and both cheeks! Just what Mommy needed! So sweet and precious! Warm little Papa Bear's butterfly kisses! Yes, I felt like I'd just been blessed by an angel and I was!
Spencer cried, "MOMMY!" and jumped into my arms! He is getting heavy! Whew! I love that little rotten booger!

Well, that's all folks! Remember pray for all going through treatments, transplants, or needing them!
Blessings and BIG Bear Hugs,
Donna

Tuesday, December 6, 2005 7:14 AM CST

Hello,

Nicholas' cbc was ok! No transfusions! Hgb was 9, platelets were 34k, and his anc was 400! We will get another cbc on Thursday. He is enjoying his christmas gift from the Childrens Brunch! He got a talking basketball thing that hangs on a door! He can actually make baskets! He kept working at it until he could do it! He breaks out in a sweat when he plays it! We took Spencer but let Nicholas stay home away from the crowds! Spencer loves his gifts too! He received a remote red Jeep that he decorated up for Christmas last night! And he received Ms. PacMan controller that you hook into a tv that had 5 games on it! Spencer actually hugged Santa this year! That was the closes he has ever been to him! Of course, I got Santa hugs too!

Well, I knew Spencer needed a day with Nicholas yesterday and I was right! He was very sad and told Frances, "I don't want Nicholas to die!" Frances told him that Nicholas was born sick but that didn't mean that he was going to die right now. Then, she told him that if Nicholas did die that he would go to Heaven and he could go to Heaven one of these days and see him again. This satisfied him and he was ok for the rest of the day. He told her he heard Mom and Dad talking about it! I don't remember even talking about it the day he mentioned or even where he could hear us but I guess little ears are everywhere! He picks up on everything! I know he heard us when we were talking about Nicholas' bear tale. I guess we need to be extra careful around him. It breaks my heart thinking about what he has to deal with anyway. We would never intentionally cause him any worry but he is too sharp! He just picks up on everything! I knew he was so troubled yesterday morning. School let out earyly anyway due to water problems so it worked out for the best anyway. I want all avenues open for communication for him and yes, I will try my best to explain things to him when he asks. Yes, I said "when" not "if", because he will talk sometimes about what is bothering him. He slept with us last night again so it isn't over with! Oh, how this is breaking my heart. I know he hurts and worries about Nicholas.

How on earth can I relieve some of his pain? and worries? How on earth can we relieve our own? All I know to do is turn it over to the Lord. Let someone with bigger shoulders handle all our burden. Just crawl right up in the arms of Jesus, while Spencer crawls right up in mine. Snuggled and safe! All the cares and worries just melt away, when you turn it over to someone that wants to help you. I can just see it now! Wow! Jesus has gigantic arms! What an awesome Saviour we have!

Now, others that are there too and need our prayers are: Little John, he has FA and today gets another birthday! He is getting his new bone marrow today! Pray his transplant is successful. Jordan B has had his transplant but really needs prayer and could use some extra prayer. Robbie is now admitted for his transplant too and begins chemo on Wed I think. Remember Ty, he just returned home from his BMT. Remember Clara, she lacks 5 more chemo treatmenst and is FINISHED! PTL! Remember Clay, he is getting Chemo at ST Judes. He still has 3% leukemia cells in his marrow, praying for 0! Praying for all!

Do you ever snuggle in your Heavenly Father's arms?
Donna

Monday, December 5, 2005 6:40 AM CST

Hello,

Please remember Spencer, he is throwing up this morning! I think he ate too late last night! Sissy Bear has been sick this weekend so he could have what she does even though she has stayed away! For the last two nights, he has had to sleep beside of me. He just isn't feeling well. He puckered up this morning and said, "Sometimes at school I get homesick!" I asked why and he said, "I get homesick for Brother!" **MELT DOWN!***

Nicholas was acting a little droopy yesterday evening but seemed fine this morning. Yes, he was already up and wanting to get out of bed this morning! He said, "I didn't go to sleep all night long because I was afraid I would have bad dreams!" I told him he slept like a log! "I did not!" he said!

Remember all the ones finished, taking, or needing treatments. It is a big roller coaster either way! Pray for the families too.

Blessings and Sleepy Bear Hugs,
Donna

Friday, December 2, 2005 8:44 AM CST

Hello,

I knew it!!! I knew it! I asked Nicholas to tell me the story he told Frances! "I forgot!" "But I can tell you another story!" Uh huh! Sure! I knew he would conveniently forget!! That is ok! I totally understand my baby!

He sure has been rotten! Feeling great! IM with Jo yesterday and loved it! He said, "Mom, I'm falling in love!" Flirted with her forever! He was typing xoxox and loved sending the smiley faces! He was all smiles and then she called him! Oh my! He told her he loved her more times than she has ever heard it! In just one hour! It was so sweet and precious! Jo would giggle and Nicholas' eyes would just sparkle and his smiling face would glow!

He told me earlier that I promised him that he could talk to Jo this am! I'm sure glad she is in Singapore! It just wouldn't do for her to be near!

Spencer was just a little grumpy yesterday evening! He had fallen on the bus and hurt his knee! He fell over his bookbag strap! He was raring to go this morning though! They were going to go to the high school to Winter Wonderland today! I'm sure they will have fun. It is just across the parking lot at the Primary! Big trip!

Well, remember all the one going through treatments, finished with them or need them. Clara lacks 5 more and she will be finished! Whoo Hoo! I'm so happy for her!

God's Blessings on You!
Praying for miracles,
Donna

Thursday, December 1, 2005 7:42 AM CST

Hello,

Mickey, I don't have a clue what I wrote that was so inspiring but thanks for the sweet email and the encouragement! Hey, any help is good! I know you have a hard time too! Thank God you believe in prayer!

We had a wonderful day yesterday with Spencer on his trip to the Hands on Museum! It was so neat! Not anywhere as big as Cincy's but the dinosaur exhibit was cool! Spencer did touch a snake! A corn snake named Big Red that was 15 yrs old! He was tickled that his Dad got to go too!
He is just the cutest and sweetest! Spencer! Not Dad! Well, Dad is too!!!! Ha! I'm going to get in trouble now!

I'm home today with HIS HIGHNESS! He is so junky! He is on his second breathing treatment already! I have hooked up an empty feeding bag to his g-tube side to let the bile and gas off continously during the night. I think it will help with the throwing up! I hope so anyway! I have done this before and think it helps. He is still nauseaous but hasn't thrown up yet! The morning is still young though!

I guess that is all for now! Keep the faith! Keep praying! Keep believing! Miracles do happen and pray that you get yours even if we don't. Hey, that doesn't mean I've stopped asking! I will continue to ask!

I see Sissy Bear told you about the story! Whew! I guarantee he won't tell it to me! He tries to protect his mommy! He is a pure angel!

Bless all those finished treatments, taking treatments, or needing treatments.

Our world would be a much darker place without the light of the little angels in our lives!
Donna

Wednesday, November 30, 2005 10:03 PM CST

Sissy Bear here. Don't panic, please. Donna was out today because of Spencer's field trip and won't be back til Mon. because Frances has Dr.'s appointments tomorrow and Fri.
Please do keep storming Heaven(I like that expression) on Nicholas' behalf.
Yesterday, he asked Frances if he could tell her a story. Of course, she said yes. Then he said that she wouldn't want to hear it because it was about the day Nicholas died.
He went on with the story: it was a sad day; everybody was so sad, but Nicholas was so tired......

He is tired; he is having those bad gas spells again where he vomits because it is so difficult to get the gas out with that tube. If we don't get our miracle of healing.....
Do I need to say more?
I know that God knows best. My prayer is for strength, courage, and faith for all of us.
See, just because Donna is not updating does not mean that you can forget about us!!! We stil need you.
Love,
Sissy Bear

Tuesday, November 29, 2005 6:50 AM CST

Hello,

Well what can I say! We went for the transfusion and they only had one RN working! Needless to say the look on her face spoke volumes when we walked in! I knew right then it was going to be a long night! They got to us a couple of hrs later! We were home by 9:30. I had to stop on the way home and work with Nicholas. He was so sick! It was coming out both ends! I couldn't get the gas to come out the vent tube and the suction machine just stopped working in the middle of all this! I was so mad! I could have thrown it out the window! A brand new machine that is suppose to be portable and it will not work unless its plugged in to power! It's going to be replaced!! All the time he was sick I was thinking, Oh no Nicholas you are using up the all those platelets! Thank God he was just tx because his little face would have been solid red from petechia! He was straining so hard! I have never felt so helpless in all my life! I hate those bad gas spells! We got home and was cleaning him up and he threw up again! I mean he actually is throwing up! Nothing in his tummy but bile but he threw it up! He was exhausted by the time we got him to bed! He was acting so droopy but stayed awake long enough for Mommy to lie with him until he went to sleep!

Spencer was asleep by the time we got home! I missed him so much! He jumped out of bed, looked to see if Nicholas was in his bed and then gave me a big bear hug this morning! "Let's go into the kitchen together Mom!" So sweet!

Remember all the ones getting treatments, finished with treatments, or needing treatments.

I thank God that He knows.....our hurts, pain, thoughts, loneliness, sins, our forgiveness, hopes, dreams, wishes, griefs, fears, happiness, and our hearts intent.

Gripping His Hand and trusting His grace,
Donna

Monday, November 28, 2005 7:03 AM CST

**Well, the drama continues..........Platelets are down to 9k, just tx last Mon! Will have to be transfused and I have a headache from last night! Pray it won't be very stressful but will be successfull.

Hello,

Well, we didn't have to go to Cincy!!! His G-J Tube is holding water! The only thing I can think of is that he had a lot of gas on his tummy and it pushed it out, even though he didn't act sick. He was so scared though. He panics every time some one touches it but seems to be settling down now. He let me put on the dressing!

Friday, Nicholas started sounding different! He had now developed Laryngitis! He is coughing up lots of junk and a touch of blood. We will get a cbc today and see what his counts are. It is very scary when he coughs so hard with low counts! He coughed all night last night!

We also have a new antibiotic! Cipronex! We put drops around his trach and in it too. Hopefully, it will help everything!

We have been on the Androgel for a week and I'm seeing some side effects! Very demanding! If you do not respond immediately, he will sulk, pout, and say, "Just ignore me then!" No tolerance for thinking at all!!!

The other night, he was looking at his hands and said, "Mom, do you wish I wasn't like this? Do you wish my hands had thumbs? Did you wish Spencer's weren't like mine when he was born? I wish I had good hands." With my heart breaking, I told him, "Nicholas, I didn't care what you looked like or had, I wanted you just the way God made you!" "You could have had blue hair and I would have still loved you!" That turned his thinking to different colored hair and then the questions continued to flow...Did I wish he had different color hair or did I wish that Spencer had different color hair! He just needed reassuring! "I just wanted you and love you just the way you are!"

Spencer and Nicholas had a ball putting up the Cowboy Christmas Tree! We have lots of bears on it too! Some are even Cowboy Bears! Along with Spiderman and Batman, new ones from Marci! Debbie, I had forgotten about the one you had made with their names on it! It was a delight to find! It took all weekend to get all villages and all the decorations up. They loved setting up their Forest Village! Thanks Bonnie! They love it! This year, we put the Christmas Thomas Train around it with one engine that runs on a battery and it was so cute! I think Mom was pretty excited too! I'll have to take photos! I have some I can post from last year! Spencer really helped me set everything up! He is Mommy's little helper!

I can ask Spencer what he would like to eat and he will say, "Just whatever you want to fix me!" He is so sweet! He has had a rash that we thought was scabies, that we have been fighting all week end! I've had everyone scatching! I have turned into a wash, bleach, and lysol Queen! Ugh! I put antibiotic ointment on it and it has disappeared! Now, we do not think it was scabies! I will have to talk to his teacher to see what is going on in his classroom! Last night, Spencer got in his bed and he said, "Mom, you didn't wash the sheets today!" I couldn't help but laugh! He will probably go to school and tell everyone what they have to do! He said, "I can flush the commode at school with my elbow!" Lights went off and bells rang! He started breaking out on his elbow down his arm first! Whatever it was, he definitely caught it from school! UGH!

BUT in spite of it all, we did have a wonderful Thanksgiving! We are very blessed! I'm still stuffed with Pumpkin Bars! They were delicious! Yummmmy! I even brought one for today!

Remember all the ones that are on treatments!

Thank God He loves me just like I am too!
Donna

Wednesday, November 23, 2005 6:32 AM CST

*We will be going back to get the g-tube replaced on Friday! Happy Thanksgiving and don't eat too much turkey!



Hello,

Hey, we are all ok! Didn't mean to raise a ruckus! We are FINE! We are survivors! We are just tired! Nicholas is great! His words on the last trip were: "Mom, I had fun on this trip!" He thinks having Mom and Dad to himself is just the most fun ever! Ha! He gets to watch cartoons and has the child life specialist wrapped right around his little finger! He get cuddled by the dr and gets to entertain everyone else! He thinks this is all just great! He forgets the pain really fast! He also had a battle scar to boast of! He showed Spencer where he received his flu shot! Spencer totally sympathized with him! Sissy Bear was at his mercy! And he was a celebrity! Lots of people recognized him from the Blood Drive Posters! Spoiled? Yes, we are! He is a little magnet and we are all so attached to him!

Not to be outdone by Nicholas, Spencer went to church with Sissy Bear on Sunday evening. He walked to the front by himself and sang the chorus of "I Shall Not Be Moved!"
My heart just swelled with pride when I heard! He is doing so much better! I told him I was so proud of him! He said, "Thanks Mom." Oh, where did my baby go? He is now a little man!

Yesterday, they had Thanksgiving dinner at school! Mamaw and Papaw went to it. Mamaw said that Spencer was sitting there looking so sad and about to cry! He was missing his Mommy! He was glad to see Mamaw and Papaw though! They got to check him out and he wanted to go to Pizza Hut! Yes, they took him! They also took him grocery shopping! He told Papaw to get some Tang! Papaw told him that he didn't like it! Spencer said, "My Mom does and we don't have any!" So sweet and precious! Yes, they got him the Tang and a few more things he just had to have! Spoiled? Yes, we are! We love our little men!

Remember all the families that are not home for Thanksgiving! I know its not ALL about eating at home and being with family but it is about what we feel inside where ever we are! Thankful that we are alive and have more time with our children or friends. Thankful we have family where ever we go, if we reach out to others! Make the most of the time you have together, where ever you are this Thanksgiving!

Thankful that Jesus loves me enough to spoil me too!
Donna

Tuesday, November 22, 2005 11:40 AM CST

Hello,

Well our round trip to Cincy will have to be done again! Yes, AGAIN! We were home for about half an hour and Nicholas began screaming for me and running to find me while holding his mic-key button in! He was petrified! I told him to turn it loose and let me see it! He turned loose and it popped out about an inch! He immediately pushed it back in and held it until I could get some water for it! An explanation of the balloon: The ballon is what holds it into his tummy! The balloon has a hole in it therefore it is not holding water to keep it in place. It will continue to move around and irritate the stoma (where it goes into the tummy) or back out of his intestines. If we see formula in the tummy, we will know it's backed out. I'm really scared when he has those gas attacks again that he will start aspirating the formula into his lungs resulting in pneumonia.

Naaaah, Life is fun, want to join us on this roller coaster! I am extremely tired and aggravated today. Nicholas is petrified if anyone touches his button except for Mom and we have to go back to Cincy to get it fixed or he will continue to panick! And the nervousness causes diarrhea! I would tape it in but he is allergic to most tape! We are figting lots of bad skin break down on his little arm where the PICC line is already! We don't need anything else to worry about!

Bright side, Nicholas was decked out in Batman shirt, pants, and shoes! Dr Harris just had to get a photo! Then, Nicholas had to tell them a bear tale! It was hilarious! Robin couldn't help but laugh! She left and Nicholas continued to tell Dr Harris and said, "Batman sneezed and snot went everywhere, all over Little Britches!" Dr Harris couldn't help but laugh! We all burst out laughing! Oh, well! I guess he tells it like it really happens! Nicholas would tell the tale and then get so tickled he couldn't talk! We all would laugh at him and I just basked in his good mood! Just thankful that he felt as well as he does!

Spencer didn't want to stay in Cincy so he spent the night with Sissy Bear and went to school. He is such a big boy! I can see such a big difference in him. I missed him terribly and so did Dad and Nicholas! We were getting ready to leave and Nicholas asked Spencer to pray for him while he was gone and Spencer said, "I will Bro! I'll pray all day and all night!" The faith of a little child! I think we could all take a few lessons here!

Remember all the children in your prayers and adults too that are taking treatments.

Pray all day and all night,
Donna

Friday, November 18, 2005 7:30 AM CST

Hello,

Nicholas was very restless last night and coughed some! He doesn't seem to be in pain just coughing. I know we will have to get that mic-key button changed! Maybe on Monday, if we can get it scheduled. We are afraid something will happen if we wait and we will have to go on Thanksgiving! That would not be good! I guess Dr and xray techs need a vacation too! Surely, we can get it replaced. This one just lasted a month! I'm clueless as to what is happening. Maybe gastic acid, or cheap ones! Who knows! I'm just aggravated that we continue to have these problems. It just seems that when he is well enough to not be in the hospital, we still end up there!

Spencer had an informal test for literacy levels and he scored the possible highest score or above in every category! He is one smart little cookie! He is already a great reader!

Pray for all the children and adults that are taking treatments. Please remember Clay Hart, a 9 mnth old just dx with ALL. visit/clayhart on caringbridge is his website.

Blessings and Bear Hugs,
Donna

Thursday, November 17, 2005 11:15 AM CST

Hello,

Nicholas' has had a rough morning, very nauseated. It kept coming to me to hook up one of his feeding bags to the g-side of his button and that would let off some pressure. I did that and got about an ounce of bile came out and he still threw up! not once but twice! Then, there was all kinds of gas that came off. I think we are going to have to increase his prevacid... Dr Putman doesn't want to change it right now! I think we may have too. Nicholas button is still just a little loose. We will try to keep this one for as long as we can, but I know if we keep adding distilled water to it, that the hole will get bigger and bigger. I think we have a slow leak right now! He is a little pale today too.

Spencer slept better last night but went to sleep late last night and was a tad bit grumpy this morning! But was ok and wanted to go to school!

Nicholas said, "Dad, will you call me tiger like you use to?" Then, Dad said, "Good night Tiger!" Nicholas smiled from ear to ear! I just let him read this and he did out loud for me! He was all smiles!

Pray for us! Remember all the ones that are taking
treatments!

Have a good day Tiger!
Donna

Wednesday, November 16, 2005 9:27 AM CST

Hello,

Spencer was feeling much better yesterday evening! I think it was the corn bread! It perked him right up! He loves it! He was soooooo ready for school this morning! He really missed school yesterday!

Nicholas is ok too. Coughing some and has had a couple of really bad gas spells this morning. I do believe his mic-key button is loose again! I think it is the prevacid that is ripping it apart inside. I think we are going to have to have different meds for his tummy anyway, the prevacid isn't working well at all!

We are also going to try something never used before! Androgel! A gel that is applied to the skin! That way it won't upset the tummy! Hopefully! Prayfully! Oh, let it be my miracle! Pray it is so!

Yesterday Nicholas was going to tell Frances a story! Nicholas said, "Bubby, will you let me sit there? It's my thinking chair!!" Oh, he is rotten!

We now have a new system! I have to sleep with him for a while and he wants to think of funny stuff so we can have our private little giggle time every night! Oh, the joys of that smiling face! He loves to laugh! He laughs at Gus Gus on Cinderalla 1 and 2, the little mouse! He loves....."Remember when....." Our new game!

Ok, Remember Emmogene, Sissy Bear's Mother-In-Law! She is in the hospital. Remember Delmar, Donna H., Clara, and all the cubs that have been submitted to the Prayer Bears and their families.

Remember when your children were little and those beautiful eyes would search for their Momma and then that little mouth would spread?
Donna

Tuesday, November 15, 2005 7:11 AM CST

Hello,

We did have a cbc yesterday. Nicholas' platelets are down to 36k, hgb 11, and anc was 1110! Platelets are pretty low with a tx just on the 8th! It wasn't a big tx though.

Nicholas had another spell with itching! He was rubbing like a big bear does against a tree! He will rub anything! Floor was his choice yesterday or beware if you are sitting next to him. His teacher had the honors to "SCRATCH MY BACK!" yesterday! Very demanding, not polite at all! How long do those steroids stay in your system? I can tell his demands are diminishing but sometimes! Whoa! I ask him what are the magic words? He will immediately become humble and say "May I, Please?" He is also a little rotten stinker! Mischevious to the bones! I love it though! I'd much rather see that than him sick, any day of the week! He is still pale and now where he is having those bad gas spells again, he has petechia all around his mouth! Also, he is having some blood around his mic-key button dressing. This doesn't usually happen until his counts are around 10k!

Spencer was complaining with a tummy ache yesterday evening and very pale. Guess who stayed home this morning! I think he is very tired and needs more fiber in his diet! I just felt like he needed to stay home. He will sleep solid for about 6 hrs then begins dreaming and hollering for me to get in bed with him! This happened again last night and he seemed really tired this morning!

The boys had some more visitors over the weekend! Yes, the party continued all weekend long! Mamaw Boggs, Aunt Cathy and her daugher Michele, and two of Michele's friends, Brittny and Nichole came! They brought drs kits! Then, the Dr was open for business! Nichole was the nurse and everyone else were the patients! It was hiliarious! They had a ball! Nicholas and Spencer were in their glory with all those young ladies there! They were so sweet with the boys!

Nicholas wanted to say his prayers to just me last night! He prayed for Spencer's tummy and then asked, "What else Mom?" I explained that prayer was the sincere desire of the heart so talk to Jesus and thank Him and tell him what you want Him to do. He said, "Make Mommy's tummy to rock! uh, feel better and make my platelets high as you can. Thank you Jesus for shelter." Turning to me he asked if I knew what shelter meant! Pointing to the ceiling he said, "See that roof? That is shelter" I told him yes and then he said, "Amen."

Remember all the children and the few adults with this horrible disease called FA! and all the other diseases that are destroying the children.

Sheltered in the Arms of God,
Donna

Monday, November 14, 2005 8:05 AM CST

Hello,

Yes! I guess everything went well! What I can remember! I'm fuzzy headed this morning and a crick in my neck from sleeping with Spencer on and off since around 1:30 am! He was dreaming!

Friday, Spencer's class enjoyed their dirt cups(Ice cream cups filled with good stuff and crushed oreos on top) with gummy worms! I also took sour worms and they loved them too! I'm sure there were tummy aches later that evening!

Then, we had Spencer's pizza party! His spiderman cake was beautiful! He is one blessed little boy! Believe you me! He has received gifts and from all over too! Thank you guys for helping make his 5th birthday very special! Lynn, thanks for the books! They both enjoyed those! Then, Frances brought him spiderman gloves that shoots out stings or water! He has asked for them forever! They came with a mask that lights up too! He smiled from ear to ear! Oh, yes! I may not have sitter for long!! Ha! Just kidding!

Now, Christmas! I can't wait until Christmas!!!!!!! They are in for wonderful surprises! Too early for Christmas, I know! Not! Camp Bethel in Lights begins on Nov. 24 through Jan 1! The boys really enjoy those! It's drive through and they don't get exposed to the coldness!!!

Ok, guess what kind of music I have heard all weekend??? SINGING! Nicholas has felt wonderful and has took spells of singing to the top of his lungs. I can't make out the songs, they are just made up ones he is singing.....once he was singing praises to Jesus, one was about a baby and its mommy, and Sunday, the theme was....."I Shall Not Be Moved!" Oh, what wonderful beautiful sounds! He has also been feeling well enough to quarrel with Sissy Bear or anyone that will play argue with him! His eyes have been sparkling and the little imp is back in business!! I love it! He still has no rosy red cheeks, but a pale little imp will suffice!!!

Thank God they were well, for I was not! I had a gall bladder attack! Sick as I could be! I had two wonderful little nurses though! Nicholas offered to rub my tummy and Spencer sat on top of me!!!! What more could I possibly ask for?? And lots of wonderful hugs and kisses! YES! I was sick all weekend! They would snuggle under the afgan with me! Oh, precious time! Please go hugg'em, kiss'em, hold them a little tighter and longer! Enjoy every second you have with your precious gifts from God! Moms and Dads, grandparents, and siblings are precious gifts from God too! Hugg'em and tell'em you love them today!

Basking in Sweet little Baby Bear Hugs and kisses,
Donna

Friday, November 11, 2005 7:24 AM CST

Hello,

Nicholas is still coughing up junk! I'm surprised they haven't put him back on antibiotics again! He will have to be, I guarantee it! He does not have rosy red cheeks but is still pale, not as pale as he was but his coloring is horrible. Frances said he was dark around his mouth and eyes this morning and having a rough morning! He will rupture a blood vessel if he continues to cough this hard as his platelets lower! That is another fear of mine! I know! I know! I lay them on the altar but somehow go and pick them back up again! It's so hard watching him decline. I can't even put it into words!

Happier note! 5 years ago today, I was in the hospital for a planned c-section! But the contractions started! and went off the charts! Did I say Happier note????? Well it sure doesn't sound happy! Oh, but it was! They took me down to or room and then the torture began! Spencer Dalton Boggs was ready for a natural birth and was way down in the birth canal! They had to literally pull, tug, coax, pull, tug and pull him back up and then out via c-section! They pushed so hard against my chest I felt like I was choking or having a heart attack! Then, I heard the crying! It was beautiful music, healthy, robust, and LOUD cries! Oh, my heart lurched and my arms ached to hold my baby! Wonderfully, blessed beyond measure to hold that precious baby in my arms, so soft and snuggly! He wasn't satisfied anywhere except next to me! I wasn't satisfied anywhere except next to him. LOVE at first sight! Now, he is 5 years old! Man! Where has the time flown? 5 years old? I cannot believe it! Then Frances said, "It won't be too long before he will be dating?" HUH? NO WAY! You don't date if you are locked in the basement until you are 30! Oops, I don't have a basement! Oh no, what am I going to do! Now, I'm in a panic! He has already been spoken for! Ms Elizabeth Connell turns 4 tomorrow and she tells him she loves him all the time! You should hear the giggles! Man, am I in trouble! Spencer now has 3 and Nicholas 100!!!! Now, you see why I really could use your prayers!

I'm taking stuff to make dirt cups to Spencer's class! Good stuff with oreo topping, then they can put their own gummy worms in it! Gross! Just like they like!! Ha! I hope they like it! It's chocolate! Spencer will!

Pray for Nicholas, Frances just called and said his temp is 100.6* right now! The weekend! I'm getting to hate weekends now! It's so hard to get anything done on the weekends!

Pray for all the ones on chemo and the side effects of it! It's a great thing but side effects are horrible....
Remember all the children too.

Bearthday Blessings to my baby, Spencer.
Miracles for Nicholas,
Donna

Thursday, November 10, 2005 7:52 AM CST

Hello,

Well, my prediction just didn't happen! No rosy, red cheeks! He is still very pale! I don't like this anemic look at all! It haunts you, once you see it! He was playing some last night with Sissy Bear and it sort of helped but not very much! He still acts very angry when he doesn't get his way! This is new territory for all of us. He has only acted this way since we started the steroids. He hasn't had any since October 23rd and he is still showing some signs of it in his system, but not much! Nothing like before!

The boys really enjoyed their package from The Connell family! They loved the pixie sticks too! Also, thanks for the Birthday packages for Spencer, MaryAnn, you are so faithful and he loves Dot to Dot! Joel, thanks for the hat extention! He loved it! I do have a photo for you!!!!
Thanks for the cards too! He has several! I am planning his pizza party Fri, 6 pm! Spiderman is the theme of course! I am brain dead so it may just happen or not! Yes, it will happen! I need some more caffine!

Praying for Rosy, Red cheeks without fevers!
Donna

Wednesday, November 9, 2005 6:46 AM CST

Hello,

I was home by 9:30ish! Don't ask me! I haven't a clue! New nurse! She started the iv and platelets as soon as we got there. It still took 6 hrs, but at least I was home before midnight! We were about an hour into the red cell transfusion and Nicholas just started singing! Wow! Talking about giving life! Those red cells really boosted him! He didn't want to walk out of hospital and had to go in a wheelchair!

Thanks to whomever donated Platelets on Nov. 3rd! O+!!! Thank you! And donated Red Cells, O+! They really do renew life! I wish you could just see him before and after! Today, his little cheeks will be rosey red and Frances will freak out! She will think he has a temp! We are use to his paleness! Yeah, right! We will never be use to that!

Cat news! None under the house! Don't know what is causing the smell! We will never know I guess!

Spencer was in a good mood yesterday, after a 4 hr nap!!! He was asleep before we arrived home last night too! He must have really been tired! He went to store for me and I gave him some spending money! He got change back and told Dad, "Dad, I can use this for lunch money tomorrow!"
He was tickled to pieces!

Remember Ms. Clara, she has started a high dose chemo and she is having some complications. Remember all the cubs getting treatments, clinical trials, or in transplant.....
Remember, pray for miracles and look out your window every day! You may just see YOUR Cloud!

Praying for miracles,
Donna

Wednesday, November 9, 2005 6:46 AM CST

Hello,

I was home by 9:30ish! Don't ask me! I haven't a clue! New nurse! She started the iv and platelets as soon as we got there. It still took 6 hrs, but at least I was home before midnight! We were about an hour into the red cell transfusion and Nicholas just started singing! Wow! Talking about giving life! Those red cells really boosted him! He didn't want to walk out of hospital and had to go in a wheelchair!

Thanks to whomever donated Platelets on Nov. 3rd! O+!!! Thank you! And donated Red Cells, O+! They really do renew life! I wish you could just see him before and after! Today, his little cheeks will be rosey red and Frances will freak out! She will think he has a temp! We are use to his paleness! Yeah, right! We will never be use to that!

Cat news! None under the house! Don't know what is causing the smell! We will never know I guess!

Spencer was in a good mood yesterday, after a 4 hr nap!!! He was asleep before we arrived home last night too! He must have really been tired! He went to store for me and I gave him some spending money! He got change back and told Dad, "Dad, I can use this for lunch money tomorrow!"
He was tickled to pieces!

Remember Ms. Clara, she has started a high dose chemo and she is having some complications. Remember all the cubs getting treatments, clinical trials, or in transplant.....
Remember, pray for miracles and look out your window every day! You may just see YOUR Cloud!

Praying for miracles,
Donna

Tuesday, November 8, 2005 10:19 AM CST

Hello,

Nicholas' counts are down, platelets: 12k, hbg-8.1, and an anc of 205........needless to say, we are getting two transfusions! Platelets dropped 36k in 4 days....!

Today, he isn't feeling well at all! I was getting ready to take him for his tx and called the lab.....no orders! I was totally shocked! That means it will be this afternoon before we get there and then a minimum of 4-5 hrs.... plus the slow paced system......I may get home before midnight!!!!! Hopefully sooner!!!

Sissy Bear is off work today and will be able to help me! Thank God for Sissy Bears!

We are smelling a foul smell and my cat has disappeared! I think it has crawled under the house and died.... Phew! Just the odor I need!

Thanks Lynn for the birthday package! I was totally surprised! That was so sweet of you, thanks! Now if I can get some time for myself! That would be another miracle!

Remember Maddie Trimper's family, she received her ultimate healing and was promoted to an angel. Remember all the empty arms! Remember all the cubs getting treatments of some kind.

Blessings and Bear Hugs,
Not begging for bread, just crying for crumbs,
Donna

Tuesday, November 8, 2005 10:19 AM CST

Hello,

Nicholas' counts are down, platelets: 12k, hbg-8.1, and an anc of 205........needless to say, we are getting two transfusions! Platelets dropped 36k in 4 days....!

Today, he isn't feeling well at all! I was getting ready to take him for his tx and called the lab.....no orders! I was totally shocked! That means it will be this afternoon before we get there and then a minimum of 4-5 hrs.... plus the slow paced system......I may get home before midnight!!!!! Hopefully sooner!!!

Sissy Bear is off work today and will be able to help me! Thank God for Sissy Bears!

We are smelling a foul smell and my cat has disappeared! I think it has crawled under the house and died.... Phew! Just the odor I need!

Thanks Lynn for the birthday package! I was totally surprised! That was so sweet of you, thanks! Now if I can get some time for myself! That would be another miracle!

Remember Maddie Trimper's family, she received her ultimate healing and was promoted to an angel. Remember all the empty arms! Remember all the cubs getting treatments of some kind.

Blessings and Bear Hugs,
Not begging for bread, just crying for crumbs,
Donna

Monday, November 7, 2005 8:19 AM CST

Good Morning!

The boys had a great weekend except for the sniffles! Nicholas nose is now running and he looks very pale and weak eyed! He is coughing up some horrible looking stuff! I'm just glad it's coming out! We are back on nebulized Tobi, for two months in a row instead of one! He had his last antibiotics so we'll see what today's bloodwork and cultures are! I know they have dropped just from looking at him.

Uncle Roger and Aunt Ann came this weekend and they all had a wonderful time together! Then Ms Libbey came over and brought some Western wooden ornaments to paint! They really enjoyed doing those! Thanks Libbey for cheering up two little guys! You are such a blessing to our family!


What do you do with a nurse that says, "You all had better watch, he(Nicholas) will get immune to all these antibiotics!" AS IF, we didn't already know that! Like we weren't already worried about it! Man! What on earth are we suppose to do? Not put him on something when the cultures turn up positive! Is that one way we can watch!? I'm amazed at the IQ of some people! ARRRRGGGH!

Anyway, new trail to go on! This morning, Spencer was eating his fruit loops and said, "Today is Mommy's birthday!" He thought of it first! That was so sweet and just made my morning! He is so sweet!

Now, pray for our miracle! Pray for my cubs! Pray for our family. Pray for Will, his counts have fallen and Mom, Kayla, has strep or flu. Will is going for his harvest this week, remember him. Pray for Clara, she has completed all her radiation and chemo, but begins a new chemo today. Pray for all the children and adults as well. Maria is in hospital, please remember her.

Praying for miracles, looking for his cloud, feeling God's Blessings,
Donna

Friday, November 4, 2005 10:02 AM CST

Hello!

Well guess what Nicholas did yesterday???? If you said "Ran to the window the very first thing!" You would have guess correctly! That is what he did! Ran and looked for "His Cloud!" Frances asked him again if he had told me and he looked really sad and said no. I asked him if he had seen his cloud and he said no! He said, "I didn't really see God but I know He is up there!" Awwww, the faith of His children! He told us to "M't:25:13: Watch therefore, for ye know neither the day nor the hour wherein the Son of man cometh!"

A song came to me this morning, "Feed Your Children!" in which the chorus goes like this:

Feed your children, but Lord,
Give me the crumbs from your table.
I'm not worthy of them all!
Satisfy others, and when they all have eaten,
Lord, have mercy on me!

And I've been begging for crumbs all morning. My soul is crying out continuously! Surely, there is a little miracle for my little guy. God, I know you're up there! Surely there is a miracle for my baby. Surely there is! Oh, the anguish! Oh, the hurt, the pain, the desperation that I'm feeling. I'm begging......just a crumb from His mighty table would be sufficient! He is just a little guy, it wouldn't take but a word from an Almighty God, another littly touch, another little cloud, or another little crumb. I would gladly give all that I have or would ever have for him a miracle.

Do you run to the window each morning...Watching for your Lord?
I know He is still up there, for I can feel His tug!
Donna

Thursday, November 3, 2005 6:51 AM CST

Hello,

Well, Frances asked Nicholas about what he said. He said, "Wait and I'll show you!" After his bath and she got him dressed, he went back to the same window in the dining room, looked up and dissapointedly said, "It's gone!" Frances asked him what and he said, "The cloud! God was on the cloud!" Frances asked him if he had told me and he said, "No, it's a secret!" I asked him about it later and he couldn't "remember" anything! Do you think he is possibly trying to protect me? That just makes it all more amazing! He is so precious! Frances said the he went back to the window twice and said, "He's still not out there!"

His coloring is way off! He is pale and somewhat ashen on his forhead. I'm sure his hgb will be low. We will know today! I'll post results whenever I know them! He is having problems remembering what he wants to say. He started the other night and I know he said it 10 times before he finally got it out! "I, I, I, I, ...."

He seems to feel better late in the evenings and at bedtime of course! I love to listen to the giggles of them playing! It is sweet, sweet music to my ears!

Spencer really enjoyed his field trip yesterday! He said they got to lay brick! They visited the vocational school. I'm sure it was educational for them! I really wanted to go but had already missed one day this week! It's so hard to go every time and they go alot! I love to listen to the tidbit of news! "Austin cried because he couldn't sit beside of Aliza!" Oh, they keep me laughing! They are all so sweet and precious! One day, Spencer got time out! He was really upset because he couldn't put the soft blocks in place exactly just like the photo indicated!!!! Mr. Perfection! Oh, I love my babies!

Remember all the children and adults that are in treatments or need them.

Stephanie, it was good to hear from you, I was wondering where you were! What you said in the guestbook about Nicholas being a mentor to many made me wonder just how many people has by baby touched! If he has shown the love of Jesus to you, please let me know. Large or small, has he brought a smile to your face?

Blessings and Bear Hugs,
Touched by an angel,
Donna

Wednesday, November 2, 2005 9:33 AM CST

Hello,

After a very quiet day yesterday, Frances unhooked Nicholas from the feeder to let him run around and play. He went to the dining room and just stood there for a while and didn't say a word. Frances watched him and then asked him if he was ok. He turned around and Frances knew something was up! She told me that he had a look about him that she couldn't even put into words. He said, "I've been talking to my Father!" "Do you know who I'm talking about?" Frances said, Yes." He said, "God! I told Him I was ready to die and wanted to see Him!" Frances kept it under control and told him the we all wanted to go to Heaven one of these days.....he didn't say anything more.

He was quiet for a while and then had school. He told Ms. Phyllis that he was "So sleepy!" After she left, he and Spencer played and played! They were laughing and playing and had the best little time together!
I was expecting the worse come bedtime but he didn't say anything to me at all. I have come to the understanding that if it is his time to go then God will have to give us all strenght to get through it. We can't do anything about it except cry for more time. I feel we have been blessed beyond measure with 7 precious years but my heart wants more time.

At bedtime, Nicholas would keep playing and he told me that he didn't want to go to sleep because he was afraid he would have nightmares. He will lie in bed and tell his cubs a bedtime story but not out loud! I saw him doing it the other night and asked him what story was he telling and he smiled and said, "Three Billy Goat Gruffs!" He is so funny! He is so precious!

Praying for strenght and courage for all the families going through a diagnosis, treatment, and loss.

How would you look if you had just spoken with your Heavenly Father? Totally at peace, happy beyond comprehension, glowing? Indescrible!
Donna

Tuesday, November 1, 2005 11:14 AM CST

Hello,

If I had updated earlier, I would have requested urgent prayer for Nicholas! He wouldn't hardly talk to Frances or get out of bed! He couldn't think of what he was trying to say and it took him about 15 minutes to get it out! BUT he is now up and feeling somewhat better!

He begged to go out Trick or Treating last night and we did! It was too cold for him but he wanted to so badly! We only went to 5 houses and he said, "Mom, this is the greatest, spookiest, best, scariest Trick or Treating I've ever had!" Broke my heart! Then, when we got home, he said, "Trick or Treating is fine but there's no place like home!" Spencer kept thinking of more places to go too!! He loved all that chocolate!

This morning, Nicholas told Frances that it may be his last Halloween! NO one has said this to him that I know of and he just up and told her that!

I just don't know what to think anymore.....I'm in La La Land! Spencer is some better but I completely lost my voice yesterday! Much to Jeff's delight!!!!!! Ha! Just kidding! I think we all have bronchitis! Now, Nicholas is a little hoarse too. It is probably viral! He is now on antibiotics for 7 days!

Last night, I kept hearing something clink against glass and raised up to see Spencer on top of the dresser! Still asleep, just swaying! I just about lost my breath! I ran and layed him back down in the bed and he didn't move a muscle! I couldn't believe my eyes! His bed is right beside of the dresser but I have no idea how he climbed up there! I was in shock! Sleep walker? Probably could be!

Remember all the children in your prayers and all the adults too! All the families need our prayers too. If you want your child's site added to our new Prayer Bears website, please email me.

Blessings and Bear Hugs,
Donna

Monday, October 31, 2005 7:37 AM CST

Hello,

Friday began with a call from the home health nurse that the blood and trach cultures taken on Thrus were positive! Again! We had just stopped the antibiotics on Wednesday and started them back on Saturday! It just never ends!

Friday Spencer came in from school feeling worse too! He was complaining with an ear ache! He and I both have a terrible cough! After giving him some medicine, his ear ache was better but he moaned and groaned all night long Fri night in his sleep! Needless to say that is why none of us got any sleep except Nicholas!

Saturday, they were both feeling better. Sissy Bear came up an prepared dinner! Thanks Sissy Bear! Too bad it was her birthday and she had to cook her own dinner! The chicken n dumplings were delicious! Happy Birthday Sissy Bear! The best Auntie Bear, two litle cubs could ever have!

Sunday morning, Spencer decided at 3:30 am he was hungry and ate a bowl of cereal! Then, at breakfast ate some chicken gravy! He continued to eat off and on all day long!

This morning, he insisted he was well enough to go to school! Mom is going to be there so he will get to come home early anyway!

Remember all the children taking treatments and the adults too!

Blessing and Bear Hugs,
Happy Holyween!
Donna

October 28, 2005

Hello,

Nicholas did get his platelet transfusion! In case you didn't read yesterdays results, his platelets were down to 8k. Man! He has petechia all over his jaw and upper lip where he has been coughing. He is having those old really bad gas spells with his tummy again. Oh, I didn't realize how bad they use to be! We have had a wonderful break but they are even scarier now with his platelets low. We are seeing some blood in his stomach and it breaks my heart to see him so sick! Let me describe it! If you don't want to read this, you had better skip to the bottom! First, you will hear him trying to hold it back, and if you ask him if he needs vented, most of the time he will say no! Unless it's really bad, then he will say, "Quick!" and run to lie down so we can get the extention to hook to his g-tube to let the gas out. Then he will begin breaking out in a sweat, retching really hard, but still trying not to throw up and rolling from side to side! Most of the time we can keep it out of his throat but barely! I'm sure this is very painful for him and has to burn. He will shudder and calm down and most of the time will say, "I'm better now!" Never one time have I ever heard a complaint! These gas spells and acid reflux use to occur daily and sometimes more than once a day! After his second Nissen Fundoplication(surgery to wrap part of the stomach around the bottom of the esophagus), they stopped. Now that they are reappearing, I'm scared the nissen has come undone or tearing loose!

Now, another thing we have noticed is he is retaining fluid! I think its when he is on antibiotics and gets that extra fluid. When they stop, his system kicks into "hold on to the fluids" mode! Because last night when she started him on fluid, he started voiding shortly! Now, his ankles aren't as swollen this morning!

Now another thing is, that the right side of his face is swollen just a little bit bigger than the left! Weight gain? He has gained a couple of pounds but he has also be itching down his v-p shunt line! Yes, call me a worry wart! I'm worried his shunt line will have infection in it or have to be replaced! This has been an ongoing thing I've noticed during this entire year, as his little system is failing to fight off infections. It could very well be weight gain and I hope that is it!

Now another thing! Do you want more worries or I prefer to call them prayer requests! Ok, I'll give you a break for now and get on to Spencer's! Spencer threw up at school but isn't running a temp! He said something didn't taste good, so pray it's just bad school food!! That would be better than being sick! He is so particular anyway! He doesn't like "something green or black in it!", as in seasonings, pepper or parsley! He is a ham!

Ready for a funny story? Ok! After giving Frances lots of sweet butterfly kisses, he told her to call, "Cowboy, Nicholas' name for him!", her husband! "Tell him you are getting some good lovins!", he told her! Frances burst out laughing! So did Cowboy! I think Nicholas is just trying to make him jealous!

Have a wonderful blessed weekend, pain and treatment free!
Blessings and Bear Hugs,
Praying that I can FROG! (Fully Rely On God!)
Donna

P.S. Happy Holyween!

Thursday, October 27, 2005 6:44 AM CDT

*Nicholas platelets down to 8k! Transfusion this evening! :(


Hello,

The boys are doing ok! Batman and Spiderman just cannot be stopped! They don the costumes and turn into a totally different character! They call me "Donna!" and can go anywhere in the house and not be afraid to find Sissy Bear while playing Hide N Seek! They are brave super heros!

Nicholas looked spiffy yesterday! They were doing re-makes at school and Nicholas' bruise had disappeared enough to get his pictures taken! We went to visit Spencer and he introduced Nicholas to all his classmates! He was so excited because we were there and acted so precious! He was so proud his brother came to class!

"What happened to him?" was the first question we were asked by someone in the picture line! Then as we went down the hallways, the children would stop talking and just look at us! I guess we are really funny looking! They are so curious about his feeding tube!

We then visited Nicholas school class and someone from William King Art Center gave an Indian presentation! They then did a sandpaper art project! It was really neat! Nicholas did the design with Mom's help of course! He loved it!

We will get cbc results today some time! It has been hectic keeping Nicholas from banging himself and keeping Spencer from injuring him as well! I will post counts whenever I get them!

Pray for all of us going through medical issues!
Pray for patience, strength, courage, wisdom, knowledge, and perseverence!

Pray for healing,
Donna

Tuesday, October 25, 2005 7:39 AM CDT

Hello,

Guess who was up singing this morning to the top of his lungs! He is a pure ham! He said, "I'm glad I woke up this morning to see how pretty you look for work!" Whoo Hooo, made my day! He is going to be a politician for sure! He was feeling fiesty yesterday evening! Very demanding and moody but still feeling well enough to be a little stinker!

Spencer was up and so sweet this morning too! His tummy wwas bothering him and he wouldn't eat breakfast! He will have pizza today on his little field trip so he will be fine I hope! They are visiting the Fire Dept!

Well, Nicholas platelets were down to 13k, hgb 9.5, and anc 490. Right now we are going for another cbc on Thurs. No sign of bleeding anywhere so no platelet tx! Guess what Nicholas received in the mail!!! A card from a Camp Sunshine volunteer that donated platelets in his honor! It thrilled my heart and lifted my spirits!!! Many thanks to you J! for EVERYTHING! Nicholas loves you so much!

Too cool to go outside and play but he enjoys Sissy Bear and playing Hide n Seek! Spencer cannot remember to save his life to be easy with Nicholas! He doesn't mean to be rough but he is pure boy! I feel like a constant harper!
This is very scary to be this low on platelets and go for a long time! Very nerve racking! But on the other hand, I love seeing them full of life and running around playing!
I would much rather be a harper then wringing my hands in worry! Oh well! They will just have to get use to MOM trying to be cautious!

Remember all the adults and children that are going through treatments. We have several cubs on our Prayer Bears that really need prayer for their last few earthly steps.

Blessings and Bear Hugs,
Donna

Monday, October 24, 2005 7:36 AM CDT

Good Morning!

I walked in the house on Fri evening and knew immediately that Nicholas was on the mend! He was so much better it was like turning on a light switch! He is just feeling better all the way around! No more diarrhea! Just a little nauseaous so that part is lots better too!

He is a mystery! Every time he is sick it affects his entire GI!

The tooth fairy was busy again at our house! Fri evening he lost the loose one! That makes 4! And he has started on another one!!!! He is such a ham! He has ran and played all weekend! I told him not to be running because his counts were probabaly low and he said, "Mom, I'm just slow running!"

We do get a cbc today so I'll post the results whenever I can! It will depend when they get to my house! and I get the results!

By the way! Mom's eyes are great! NO cancer or glaucoma!!!!! No more local eye drs either!!!!!!

I had to take Spencer to get blood work on Saturday and it took three of us to hold him down! He was hysterical!!!!!
I dreaded it so much! I just knew what was going to happen! He watch them put the needle in his arm and forgot to cry for a second! He realized that it was over with and was ok! He wouldn't even look at them when it was over let alone blow kisses like Nicholas does! Broke my heart and I was totally washed out! Totally drained when it was over with!

Remember all the ones taking treatments or are just in need of prayer! Debbie, Delmar, Clara, Karen, Joe, and all the children! Too many to even begin to list!

Praying for healing, peace, and contentment,
Donna

Friday, October 21, 2005 8:08 AM CDT

Hello,

Nicholas seemed to be in a great mood yesterday evening! He and Spencer were playing hide n seek with Sissy Bear and they were squealing! Pure delightful, sweet music to my ears!

Spencer has a nursery rhyme contest! It is great and they get prizes if they can recite them! He already knew the one for this week anyway!

My mind is in shambles this morning. They have found something in my Mom's eyes. She heard the word cancer and cannot remember anything else the eye dr said. She is going for another opinion today. Please remember us in your prayers. She had half her lung removed about 14 yrs ago because of cancer! She is really scared and needs your prayers. It could also be diabetes related too.

Remember Robbie, mi/robbie, going to tx because of chromosome change, Monosomy 7. Remember all the ones in treatment!

Praying for God's touch,
Donna

Thursday, October 20, 2005 8:00 AM CDT

Hello,

Nicholas asked Frances to read to him one day and when she was slow in responding he proclaimed, "I'm the King and I'm the boss, what I say goes!" She burst out lauging and then Nicholas got so tickled he couldn't keep his stern look about him! He is a pure ham!

Yesterday, Nicholas was singing to the top of his lungs! Yes, he is feeling much better. We began his two antibiotics again! He is on Synercid and Levoquin again! Hopefully, this will clear up his lungs! He actually sounded better last night! He is still suffering from diarrhea in the mornings from the Anadrol and his bottom is scalded! Yes, big bummer! We are now down to giving the medicine two days a week! I hope and pray that is enough to boost the marrow!

His platelets were down to 38k on Monday and we will probably be getting another cbc again or may wait until next Monday if he doesn't bleed anywhere. It is a day by day case!

Mr. Spencer painted a scarecrow and took it back to school yesterday and they took his photo with it! It was so cute even if we forgot the hair! Spencer said, "That's ok, I wanted a bald scarecrow!" I couldn't help but laugh! He is so funny! He did really well! I was impressed! He chose all the colors and painted it himself! It had a lopsided smile that was just the cutest! I wished I'd taken a picture of it!!!

Remember all the ones taking treatments, Karen Coleman, Keith Perry, both from Norton. They are taking treatments with Clara! Ms Clara is doing fantastic so far!!! Prayers for Delmar, Debbie, Joanne, Charisse, Maria, and all the children that are suffering!

Blessed beyond measure,
Donna

Wednesday, October 19, 2005 8:36 AM CDT

Hello,

We arrived home yesterday evening. Nicholas has been so nauseated, just like old times all over again! He had even been throwing up! It was a very tough trip! Going and coming! He is coughing up some really thick yellow secretions too. They were going to put him on something but I think it will have to be two different antibiotics now. Overall, he is feeling better, the mic-key button site is still tender and sore but he isn't scared it will fall out not!

We hadn't been on the road for an hour when Spencer asked if we were home yet!! Then, a couple of hours later, "I want to eat at Long John Silvers!" Of course, we did. He hadn't eaten well on this trip and still sort of croupy! He did eat some but later in the evening ate some more fish! It was worth the stop.

Jeff's brother, Darrell and his wife Heidi were in and came over with Mamaw Boggs last night. They brought their poodle Misty and the boys absolutely loved it! They enjoyed her little tricks! Now, Spencer and Nicholas are saying they are going to the pet shop and getting a: one said white, one said black, poodle and naming it Misty too!
Thanks a lot Heidi!

Remember Mamaw Boggs today, she is having a cataract removed! Remember all the ones taking treatments for cancer or some other life altering disease.

On this roller coaster we are on, you take a plunge downward and pray, then its a uphill battle with prayer, then its a short respite at the mountain top with Praises to the Lord and then pray again as we start downward. Only ours is more like they could plunge down, with a small plateau, and then go plunge even farther! Yes, we still thank God for the plateaus. Hey, I'd even like to see a very long plateau! Actually, I think that is what we are on....it just seems like its at the bottom! How do we handle this journey? With prayer! LOTS of prayer!

Our journey has let me see the need for encouragement in others journeys. Sometimes we just need a friend who will listen! We don't expect "help" all the time! Remember Colton's mom, Laura, she really could use some encouragement right now!

Praying, Trusting, and Believing in the Healer,
Donna

Monday, October 17, 2005 6:22 PM CDT

PTL! Nicholas did great today! He had a different Dr. who was very kind and gentle.
They are very tired and are staying over tonight. They will be home tom. eve.
Pray for their safety tonight and tomorrow on the way home.
I'm always asking, but there is no one else who can deliver us. God can do all.
Love.
Sissy Bear

Sunday, October 16, 2005 8:48 PM CDT

Sissy Bear here. I thought I would update tonight because I won't have time tomorrow until late. Nicholas is in Cincinnati; he is having problems with micki-button. It is loose again and will have to be replaced. He has to go there to get this done because of the GJ tube. He cried all morning because of having to get this done. His stomach is so sore and tender, not to mention that the Dr. is rough and very abrupt. He needs people skills as well. Pray for him,too; he needs kindness and the knowledge that he is working on children, not a machine.
If they don't get back home tomorrow, I will let you know how things are going tomorrow night. If they get back, Donna will update Tuesday.
Thanks for all the prayers and support.
Until next time,
Love,
Sissy Bear

Friday, October 14, 2005 7:15 AM CDT

Good Morning,

Spencer went to the Pumpkin Patch in Nickellsville yesterday and had a great time. They gave them all a little pumpkin, went on a hay ride, corn maze, and petted a minature horse and some goats! They also had a baby lama! It was ok but I expected more for some reason! Then, I took him to get his physical for pre-k and he had to have 3 boosters for his immunizations! Not a happy camper at all! Super Wal-mart made him feel much better! Now, let me tell you what a sweet baby I have. Here he is the one with the boo-boos and he wanted Batman bandaids for "Brother!" Now, how precious is that!

I called home to check on Nicholas when we could get a signal and he wasn't feeling well at all. He had diarrhea again and said, "My feet are soooo sore and my legs are hurting me, I can't walk." He was back in bed by 9:30 and slept til 2 or so! He doesn't do that anytime!!!!! Hence, it was major late 1 or 2 am before he could go to sleep last night! I'm sick with a sever sore throat and very tired today!

Dr Harris thinks it is from the Anadrol and put him on it twice a week! He thinks it is causing leg cramps! How on earth is that going to help my baby's marrow????? I'm getting very discouraged...............

Pray for all the children and adults getting treatments or need prayer, Clara, Sherry, Donna, Delmar, Joanne, Julianna, John, and all the ones that are on our Prayer Beras! Too many to even begin listing! Pray for these and all their familiess.

Praying for God's touch again,
Donna

Wednesday, October 12, 2005 6:40 AM CDT

Hello,

A very sleepy hello at that! Nicholas received his platelets and a red cell transfusion yesterday evening. He has his tank full now! We got back home around 1 am!!!

Yes, I'm exhausted and so was Nicholas. He said, "I can't wait to get home, I'm totally exhausted!" He has been saying this a lot! Yes, he stayed awake but had a nap again yesterday. He wasn't feeling well at all, no major fever, but really congested. His nose and eyes have stopped running so I believe he is on the mend. His mic-key button stoma looks much better too. Still very tender but looks lots better.

Nurse Debbie told Nicholas that she would walk us out to the van. She said that she wouldn't let anyone else because she loved him and wanted to do it! He said, "Debbie, you have to share your love!" "Did you hear me? You have to share your love!" She didn't know what to say!

Spencer went to Sissy Bear's for a while yesterday evening! He asked Dad where we were but didn't miss us too much! He went to sleep fairly quick and was up early this morning! He woke up around 4:30 this morning and wanted me to sleep with him! I couldn't believe my ears when that alarm clock buzzed this morning! Oh, I was so sleepy! But overall, we got our 4 ususal hrs or so! Ha!

Remember Will, his counts have dropped to in the 50's. Kayla was hit pretty hard because this is the first time it has dropped so low! I would be estatic with a platlet count of 56k! When you've been barely above 10k, 50 looks sooooo good! But I can remember coming down to 50k, Nicholas stayed there for 5 months. Overall, Nicholas averaged dropping about 30k a year until he has hit the bottom. I can't say these meds aren't totally working, they seem to be holding him up some, just not generating enough to do any major number change.

Remember Donna, Clara, Delmar, Teresa, Debbie, all have very different touches from God. Remember all the children also going through treatments. Jacinda could really use any extra prayers you could whisper for her.

Share your love to show God's love,
Donna

Tuesday, October 11, 2005 6:41 AM CDT

**We will have to have platelet and red cell transfusions this evening....pray for my baby..
*cbc results above!

Good Morning,

Nicholas had a very rough day yesterday and actually slept for a couple of hours! That just doesn't happen during the day unless he is sick. His little eyes and nose were pouring last night. Spencer was a little better but started coughing when he laid down to sleep. He woke up for another dose of medicine.

Nicholas still did great in school yesterday evening even though he wasn't feeling well. He was even writing better too.

Sissy Bear asked Nicholas the other day and Nicholas replied, "Absolumente nada!" It was so funny! I couldn't help but laugh! I can't even remember what she asked but it was hiliarious, she may have just been wanting to talk to him! Whatever it was, he didn't want to do anything! Now, he is throwing the spanish back at her!

I found a pair of camo fleece lined pants and Spencer had to try them on and pranced around like he was a king! They made him want to dance that is for sure! He is a ham!
We all cracked up at him! He had to show them to Nicholas teacher and to his Dad! He thought those were cool! I told him he could wear them squirrel hunting with his Dad! Now, he will expect to go this evening!!!! He takes everything literally! He is so precious! He also read a book to me last night, Forest Animals! He did really well! He is doing so good but I can tell he is picking up some things from school!

Remember all the ones that are going through treatment, Juliana Banana, Clara, Delmar, Donna, Denton family, all the FA children, cancer patients, mental illness, and all the sick.
Remember the empty arms.

Believing in the Healer, Comforter, and Savior,
Donna

Monday, October 10, 2005 7:33 AM CDT

Good Morning,

NO one would believe me when I say, "It never stops!" but at our house, it just doesn't! Nicholas pulled his mickey button by catching it on a toy and it cut his belly a little bit and it is nasty looking! Some blood and oozing nasty stuff! It is so tender and he is really scared when anyone touches it. I have to tell him to totally relax to even get some antibiotic ointment around it.

Friday evening, he enjoyed a visit from Mary and Ms Clara! Clara looks absolutely wonderful!!!! Taking her chemo and radiation really well with no side effects thus far!

Saturday, Nicholas wouldn't let me out of his site! I should have known something was wrong. He wasn't feeling a bit good and coughed all night long. He may have slept for one two hour interval!!! Needless to say, Momma Bear was exhausted!

Dad was an absolutee wonder! He cooked for all of us and even cleaned up the kitchen! He felt better after a nap and after his headache was gone!!! I'm sure he knew most every time I was up with Nicholas too! So Spencer was the only one that slept.

Now, they both are sniffing and sneezing! Bless their little hearts! Colds again. Has to be a virus, any little thing brings his counts down even farther and causes Nicholas looks horrible! He is very dark around his mouth and eyes. We will have another cbc drawn today and I'll post as soon as I know.

Pray for everyone that is going through an illness, Delmar, Clara, Denton family, Baker family, as well as all the empty arms,

Blessings and Bear hugs,
Donna

Friday, October 7, 2005 7:49 AM CDT

Hello,

Nicholas is turning into a Mr. Grumpy Bear! He is short with everyone and will roll his eyes, sigh really big, and say, "Shhhoooooooo!" if he has to repeat anything! Very dramatic! I know this personality change is a direct effect of the steroid Anadrol! His symptoms were just about gone and now, here we are starting it again!

I went home yesterday and he looked so dark around his mouth and eyes. Then, later on he was real pale. I cringe just remembering. Last night, I noticed blood on his PICC dressing but at the back... I held my breath while checking it and he had scratched through the edge of the dressing and it was bleeding. Scared me to death but knew it wasn't where the line goes into his vein. Thank God it was just a scratch but it bled a lot! More since his platelets are down. There probably wasn't much but it sure looked like it to me!

He wanted me to lie down with him "For five minutes!" I was patted on the cheek and heard, "My sweet little Mommy!" Now, I feel touched by the hand of God too! How precious can one little boy be?

Please pray for him, he is so nauseated this morning! Pray for God's will to be done in all our lives. My mind went back to the NICU and remembered how God touched his little body then! And how one nurse was mean to me! I still get aggravated with just the thought of him! I had to pray really hard this morning! Then, I remember the nurse that was so broken hearted when I got to see him after surgery for the first time. I would love for her to meet him now!
What a blessing he would be!

Remember all the children and adults that could use the hand of God to touch them. We all do at some point in our lives. Turn to Him if you feel the touch.

God gave us His Son!
Donna

Thursday, October 6, 2005 6:39 AM CDT

Hello,

Well, the diarrhea is only in the mornings and not in the afternoons or nights. Thank you Lord! Yesterday, he started coughing up blood but it also stopped. Thank you Lord! I can see the Lord working when no one else can. Isn't God wonderful! Again, thanks from the bottom of our hearts for the prayers going up for our precious son.

We did get a cbc yesterday too. His platelets were down to 15k, hgb down to 8.2 and that is all I have at this point. I'll post more when I get more. They will probably do another cbc on Fri. don't think they will wait until Mon. We also did a stool culture. Waiting to see if it is c-diff. Nurse said it looked like chocolate pudding!

Last night was Anadrol night and I only gave him a quarter of the pill, about 12.5 mg to see if he will be able to tolerate that. Pray that he will be able too. If not, then it is not meant to be.

Spencer, well I bragged too quick! He was in a terrible mood yesterday evening. I couldn't get out of his site to even get his food! Then, I suspected he thought we were going for transfusion and told him that we were not going. He was fine after that. We went outside and they played for a while! Checking on the egg!

Did I mention the eggs? Well, Dad was digging in their sandbox and Spencer told him to dig to the right! He did and found 22 eggs! We didn't know what kind they were. Most of them weren't any good, two was left and one of them was oozing! I cracked it open and it was a baby.........mud turtle!!!! It wasn't completely formed but was moving around. We sat it beside of the creek and it was gone the next day! The boys were absolutely thrilled to see all of this and has told everyone that has happened through the door! We buried the remaining egg! What a thrill!

Remember those that need the hand of God to touch them.
Blessings and Big Bear Hugs,
Donna

Wednesday, October 5, 2005 6:37 AM CDT

**Update for today: high odor diarrhea this morning, pray it's not c-diff.


Hello,

The diarrhea stopped! Praise the Lord! Ty, ty, ty for praying for him! If he only has the diarrhea in the morning and that is all, I think we can tolerate the meds! YES! The side effects are horrible or should I say possible side effects but the one we want is the boosting of the marrow into producing white and red cells, and his platelets. We do not want the others, as in liver turmors, stopping his growth, or the masculinization but that doesn't mean it won't happen! Pray for only the good effects of the steroid! Yes, of course I'm selfish! He is my baby for a while and I want him for as long as possible.

Nicholas asked Frances if God ever woke her up! He then said, "God woke me up last night and I saw the hand of God!" I asked him about it later and how God woke him. He said, "He just said, Nicholas!" I asked him about God's hand and he patted his cheek showing me what God's hand did. I didn't know what to think but I do thank you God for touching my baby. I'm still in awe! Peace, like a river flowing over my soul!

I found a toy in Spencer's bookbag and asked him about it!He said that he was the best reader and got to pick out a toy from the treasure chest! I'm so proud of him! He is so sweet! He giggles first thing in the morning and up to bedtime! I love to hear him laugh! He and Dad were in the bathroom this morning and I heard him just laughing up a storm! Dad was letting a little stuffed bear wash its paws and pretending it had gotten its head wet! Spencer was laughing so hard! Music to my ears!

Pray for Clara Moore, Delmar Adkins, Dentin family, Danial Baker, and all the ones in hospitals, getting treatments, transplants, or on clinical trials.

How many times has God patted your cheek?
Blessings and Bear Hugs,
Donna

Tuesday, October 4, 2005 7:34 AM CDT

Hello,

Yesterday's cbc results were down farther than expected and I think it has everyone down. I began the Anadrol last night and guess what? Yes, he has a severe diarrhea this morning! Has to be the medicine!!! Does this mean our only hope cannot even be tried? I just knew this one was going to work and we cannot even get it in his system long enough to see! I don't give it tonight as we are trying alternating nights. Pray this diarrhea will cease and his little system get use to the medicine and the marrow to respond. Is that asking too much? Lord, forgive me if it is, help me accept Your will.

We really need your prayers. You will have to stand in the gap for us right now. Pray for strenth, courage, wisdom, knowledge, peace, and contentment. Surely, there is another medicine we can possibly try.

Pray for Donna Hensly, she is still in a skilled nursing facilitiy. Pray for Clara Moore, she is getting chemo and radiation treatments. Pray for Delmar Adkins. Pray for The Denton family, their 2.5 yr old has cancer and baby has to have heart surgery. Pray for all the FA children, and all the ones that are sick, in clinical trials, on treatments, in transplants, and all the empty arms and broken hearted.

Still trusting in the Healer,
Donna

Monday, October 3, 2005 7:46 AM CDT

*Updated blood counts!

Hello,

Nicholas and Spencer had a big weekend! They have had full days and slept well at night! Their days included church, picnics, hay lofts, wierner roasts, fish fry, playing with new found friends, tractors, and feeding the horse marshmellows!

They helped Dad and Papaw haul horse-made fertilizer to the hay fields! Ha! They spent the entire day "helping" and loved every minute of it! Spencer even ate Beene Weenes with his Papaw and said, "This is just the best dinner, ain't it Papaw?" He is too funny!

Overall, wonderful fun filled weekend. Then, I noticed something next to Nicholas' mic-key button. It was red and I checked it out. He has bruised his stomach and it was turning red and swollen around it. I think he was too fiesty the other day jumping and pulled it a little bit. I put some Neosporin on it and more Vitamen E on it. The swelling was down by yesterday evening. Hopefully, it will heal completely. Scared me to the depths of my being. I have an overactive imagination evidently!

Remember all the children going through treatments, transplants, and trials. The adults too: nc/jeff,
visit/claramoore

Heir to the Kingdom of God!
Blessings and Bear Hugs,
Donna

Friday, September 30, 2005 9:57 AM CDT

Hello,

The boys are doing great! Nicholas got really nauseated during the antibiotic going in this morning. Most mornings, he gets nauseated but this morning he actually threw up but only when the meds were going in!

The other day, he was feeling real bad and he told Frances, "You know I'm going to die soon!" "I can't wait to see God!" Frances told him to stop or she was going to cry. He said, "I'll see you and Chub(her husband) there too!" Needless to say this broke Frances' heart. NO ONE tells him this or even mentions it! He told this to Mary one morning when he was feeling bad too. It breaks my heart. He just pipes up and says this stuff. Most of the time you aren't even talking about anything in particular, and he will just say whatever is on his mind. Like it or not! I asked him how he was feeling when I arrived home that evening and he said, "That tylenol made me all better!" He was complaining with his ears and tylenol cold probably helped dry them up some!

He tore up the home health nurse too. One time, he asked her to transfuse him and he hadn't ever done that before. She was very concerned about him. He knows when he needs a transfusion.

Last night, he wanted me to lie down with him again. He is so sweet and will just pat on my face. Precious moments! Oh Lord, we need this precious angel a miracle. Please hear my cry and the desire of my heart.

So many children and adults are suffering with the treatments that they are taking, please remember them too.

Trusting in the Miracle Giver,
Donna

Thursday, September 29, 2005 8:26 AM CDT

Hello,

Good rainy morning to you! It was pouring this morning! We need the rain though.

Did you see those black and blue eyes? It is now spreading down in his cheeks! He looks so sweet in that photo! He was laughing so hard, he thought it was something to not pull his glasses off! He thought he was aggravating me! Of course, I played it up! There is another one of him acting silly too! He is too cute!

Spencer is all dressed up today for photos! He would not wear his black slippers! Had to wear brown Cowboy boots! Oh well! I'm sure he will still look so handsome! He was all smiles at Frances' compliments! If he will only stay in a good mood until they take photos! I wish I could have seen him! I'm sure he looked precious though! I showed him what he was wearing today and he said, "Wow, that's snazzy Mom!"

I went home yesterday evening to everyone looking out the window at snakes! There were a den of snakes coming in and out of our block wall. They were playing or something! The were ringed neck brownish gray snakes. I've seen several small black ones but these were more brownish! Nicholas wanted right in the middle of looking for them! Ugh!

Remember Baby Donovan, Jordan, Ty, Clara, and a host of others! tn/littlejohn goes for testing today and will begin his bmt soon, he also has FA. Also, remember the families involved too.


Leaning on Jesus,
Donna

Wednesday, September 28, 2005 7:10 AM CDT

Good Morning!

We did get our platelets in record time!!! We were there, platelet tx, and back home in about 4 hours! Yes, it was probably a record! Spencer was crying when I left and fell asleep before I got back home.

Spencer went to Magna Vista Farms yesterday on a field trip! It was fun for the children! They had two ducks and Spencer still is talking about their names! Toast and eggs was the female and Biscuits and Gravy was the male! Spencer like Biscuits and Gravy! He was still laughing about that this morning! They saw ducks, chicks, rabbits, goats, horses, cows and a minature pony preformed tricks for them! They rode a horse and went on a hay ride! It was really fun to watch the sheer joy on their little faces! Spencer enjoyed the rest of his day with Mom! Not to mention the chocolate ice cream!!!!

I think Nicholas is getting more fluid on his ears. He is nauseated more and cannot hear as well. He is still on antibiotics for the PICC line infection but it isn't helping his ears. Needs something else for them...I can tell! Must need something for gram - too!

He was pretending that Frances was his wife yesterday, calling her Honey, Darling, and Baby Cakes! Too Funny!
They were pretending to talk on the phone and she asked him how he was feeling. His answer? "I'm fine but my ears are bothering me some!" They probably were!

Prayers request for all the children needing special touches, ut/jordanbrunson, Ty, Baby Donavan, Jacinda, Nicholas, Sean, Katie, Julianna Banana, Estephany, and many, many more! Remember visit/claramoore too. She has had her first days of chemo and goes for radiation today.

In God I trust,
Donna

Monday, September 26, 2005 6:56 AM CDT

**Platelets are 20K, and will go for a transfusion this eve! Hgb-9.1 and ANC-390!

Hello,

Overall, the weekend was great! The only bummer is Nicholas bump on the head has darkened and is still swollen. He had turned blue on the inside of his little nose. I know his counts have fallen some and it will probably look horrible by the end of the week. I get weak looking at him and can still hear his head hitting the floor.

Nicholas is still positive for MRSA in his PICC line. He is still on antibiotics until today but I have a feeling he will have to have more or that PICC line will have to come out. His little arm is broken out around the site because of the tape that holds the line in is breaking down his skin. He has a terrible time with any adhesives. He came to me the other day and said, "Mom, I accidently made a hole in it!" He had scratched through the dressing and tore the clear bandage loose. I had to change everything! That made the third time. He continues to itch and it is very hard for him to not scratch. He had one spot bleeding! I think I changed it three times last week! I wished we could leave the dressing off but cannot! That would be a direct way for infection to get in his blood stream! And a much greater chance of pulling the line out.

Nicholas is still rotten! He was in the biggest way all weekend. We went to Mamaw Boggs and Cathy said that she hadn't seen him like this in a long, long time! I told her that is what a red cell does! Actually brings him back to life.

Spencer has been sick most of the weekend and droopy. He wanted to go to the Pizza Hut and he actually ate really well! Anytime you ask him where he wants to go, he says,
"Pizza Hut!" I may have to have his birthday party there!
He felt like aggravating Nicholas though! He loves it when he can wrestle with Nicholas but as his counts start dropping, it's hard for him to slow down!

Pray for Clara, she begins her chemo today and radiation tomorrow. Remember Hubbey, his bladder is 95 percent blocked and is in tremendous pain. Remember Joyel Wayne (Daddy Bear) as he goes to Alabama to work. The boys are really going to miss him!

Blessings and Bear Hugs,
Donna

P.S. Nicholas will get blood work today, I'll post if I know early.

Friday, September 23, 2005 6:55 AM CDT

Good Morning,

Nicholas' nasty bump didn't bruise like I thought it would but is still a little swollen. It has turned dark all around his forehead and the bridge of his nose. The swelling has changed his facial features. He felt ok though and was going strong yesterday. I asked him if it was sore but he said no, only when he touched it!

Spencer sounds really croupy and didn't feel too good yesterday evening. I went to the funeral home and he told me, "Don't talk to anyone, just go and come back!" He is too funny! He did not want me to go and cried when I left. It broke my heart. He told Dad that no one loved him! Tore Dad up! I told him that no one on this earth loved him more than we did! He knows that! He just knows what to say!

This morning Spencer said, "Mom, I've got 90 girlfriends!" I said, "What? 90!" He smiled and said, "I hope they are there today!" Now I know why he likes school! He is so cute. He was fine with me leaving this morning! "Bye Mom! I'll see you tomorrow!" I told him I thought he would see me before then! Then, he told me to beat him home this evening! I guess all day to him seem like two days!

The dr are going to continue Nicholas' antibiotic for 5 more days. His blood culture is still showing up positive! He has no symptoms but it helped his diarrhea, nausea, and ears! He was nauseaed yesterday morning pretty badly but that is his normal morning thing! He made it three weeks without some type of antibiotic this time! I'll take that as an improvement but truthfully, he needed it before then. I could tell he was having fluid on his ears again. I will begin the Tobi this weekend again. He has been off of it for a month. Hopefully, that will continue to help his ears too.

I think we will be able to start the Anadrol (Oxymetholone)again too. Hopefully, it will not cause any problems but will work on his marrow! Oh, what a blessing that would be. Please pray for that to happen. That would be wonderful!

Blessings and Bear Hugs,
Donna

Thursday, September 22, 2005 8:32 AM CDT

Hello,

First of all, please remember the Dingus family. Kim's dad Charlie Dingus was found in bed on Tuesday morning. He had passed during the night!

Now, please remember Nicholas. He fell last night and has a nasty bump on his head. He was in the best little mood and has been so full of energy. He said, "Mom, I'm pretending to be a super hero and I have a cape on!" I was telling him that he was my hero anyway! He walked into the dining room and I looked down. I heard his head hit the hardwood flooring. He started crying and holding his nose. His face was flat on the floor. I put ice immediately on his head and we held it on and off around an hour. He was more upset because he thought he was going to the hospital. He said his head was hurting really bad and we asked him on a scale of 1 t0 10 how bad was it hurting. He said, "Ummm, a 2!"

Blessing in disguise! The home health nurse was suppose to do bloodwork today and came yesterday. His platelets were 122k!!! His transfusion was on Saturday and was a big harvest of 345 ml. That was the first thing I had thought of! Thank God his platelets were 122k today! Thank God that home health came early! I watched his pupils and how he was responding to me and to Dad during the night. He is up this morning and it has turned blackish blue looking! Oh, I have never been so weak afterwards! I was totally washed out!

Spencer had his teacher visitation on Tues evening and read a book to them! I think they were impressed! He acted so cute and sweet! Yesterday was a parent meeting and we made a pumpkin magnet and leaf necklace with our children! It was fun! We also watched a video of their daily activities! Very informative!!!

Blessings and Bear Hugs,
Double thanks to the platelet donor!
Donna

Monday, September 19, 2005 7:31 AM CDT

Hello,

Spencer sat toward the back of the bus and got "bus sick!" I went to school and washed him off. He had an extra change of clothes there. He wanted me to stay a while with him and I stayed through lunch. He was fine the rest of the day.

We got up early Saturday! Spencer woke up and stayed awake! No sleep for Mommy! Then around 11, a dr called from Cincy! Nicholas' blood culture was positive for something. We had to go inpatient for antibiotics! I could have easily done this at home! But he was coughing up a small amount of blood and we got a platelet transfusion while we were there! We weren't home for an hour and received a call from home health! We were on the wrong antibiotics! The other antibiotics were already ordered and I barely caught them in time to stop the delivery! about a 5 hr trip! Anyway, they ended up putting him on on Synercid for 5 days. I do not feel like he has any bacterial infection in his blood stream! He has no symptoms! It is probably a contaminent!

Nicholas didn't want to come home! He wanted to stay in the hopsital, "So everyone will come and see me!" I told him they would come up to the house! He was one happy camper then! Mamaw, Papaw, Lena, and Larry came up. He scared Larry with his little snakes that Mary had brought him and that made him so happy! He is back to his old sweet, rotten, little stinker, michevious self! Mary brought him Batman halloween buckets!! He was thrilled! He had to take it to the hospital and scare all the nurses with it! Letting them get some "candy" out of it! They all knew he was up to something and would scream that much louder for him! Larry is actually scared to death of the snakes and Nicholas hid while he looked in the bucket! Then, when Larry threw it, Nicholas burst out laughing! He laughed and laughed! So precious!

Kim called him last night too! She told him she wanted some sugar! He said, "Absolutely not! You cause trouble, confusion, and delay!" Kim and I burst out laughing! He had heard that on Thomas, the tank engine! Mr. Sir Topham Hat! Oh, he is so funny! Then, he laughed and clapped his feet! He told Spencer that he couldn't clap his hands so he claps his feet instead. He can really make them pop!

Prayer Request: Continue to remember my cousin, Sherry. She is doing great after her surgery, she is so blessed!
Sissy Bear's brother-in-law, Hubert Mullins, has been dx with prostate cancer and goes for a biopsy today. Please remember them in your prayers.
Ms Clara goes Wednesday for her port. She begins Chemo on the 26th and radiation on the 27th. She needs strength!

Please don't cause trouble, confusion, or delay! Pray harder!
Donna

Friday, September 16, 2005 7:08 AM CDT

Good Morning,

Thankful for a good nights sleep, just up one time with Spencer! He really enjoyed the play yesterday and said, "I wasn't scared one little bit!"

Nicholas is still having watery stools! They are going to culture it today and do another cbc. His blood culture came back negative, thank the Lord. They are going to repeat it today too.

Nicholas isn't back to his old mischievious self yet, but did have rosey red cheeks yesterday evening! He looks better but was still droopy yesterday. He told Frances on Tuesday, "I'm getting weaker." Hopefully, the red cells made him feel better. He wasn't dizzy yesterday so I'm sure the red cells helped that and he seemed to be thinking better! He was dizzy after his transfusion too. That could be inner ear infection too. We have to repeat everything we say before he can hear us. I think where we stopped the nebulized Tobi, he is getting sick again. It is suppose to be given a month, then off a month. We had to do 2 months on and are now trying a month off. He has been off for 2.5 weeks. I didn't realize how much it had been helping his ears! Don't miss your water until your well is dry!

I made him do some writing yesterday evening and it was terrible. He took a break and I put him back writing some more. He did much better! He said, "This is going to be the best "c" that you have ever seen in your life!" Then dramatically wrote a "C"! He is too funny! He said, "Are you proud of me now?" I told him, "Yes, I'm always proud of you!" Of course, Spencer had to show him how he could write the number 8 too! It was funny! Mommy bragged on him too!

Gotta go, Spencer threw up on himself at school!

Blessings and Bear Hugs,
Donna

Thursday, September 15, 2005 6:49 AM CDT

Good Sleepy Morning!

You guessed it! We arrived home in the vicinity of 11:30 pm! 6 hours at the hospital for a red cell transfusion! I'm so thankful though for the blood donor! Overall, I couldn't tell it perked him up because as he said, "I'm grumpy, tired, and sleepy!" Maybe today will be a different story. He was short of breath yesterday and hopefully, that will continue to get better too. His legs are bruised terribly and will probably need platelets soon.

Spencer and Dad went to Burger King but it was too cold to play in their play area! He was asleep by the time we got him last night and I missed him so much. He has a field trip today. They are seeing a play, Aladdin Jr. I hope he will like it! They will probably be calling me to come and get him! He hates anything that has a villian in it!
I am hoping he will enjoy the play though. They are going to McDonalds afterwards. He was a little on the grumpy side this morning too. Too early to get out of bed! I hate to wake him when he is sleeping so well.

Remember all the ones in transplant, treatments, or transfusion dependant. Remember the empty arms and aching hearts.

God still cares,
Donna

Wednesday, September 14, 2005 7:08 AM CDT

***We are going for a red cell transfusion. Transfusion to combat confusion!!! Bless his little heart! Pray it goes smoothly!

Hello,

Nicholas' temp went down yesterday even. The home health nurse came for a blood culture, kidney and liver functions, and another cbc yesterday evening. She said he sounds really well, lung wise! Thank the Lord! He wanted to go to bed but ended up looking though some books to give to the Katrina Relief Book Drive, 6730 N. Quail Hallow Dr., Apt 1, Memphis, TN. 38120 IF you have some books to donate, please send them in. Thanks

Nicholas asked me to sleep with him last night! It was the first time he has asked this in a long time. He is so sweet! Just petted on my face and gave me lots of hugs. I loved it!!!!

Spencer has a runny nose again! Bless his little heart! He just can't seem to get rid of his cold or chest cold either!

Remember all the ones in treatment, transplant, or trials! Ms Clara does have to have 25 radiation treatments beginning on the 27th. Please remember her, she will find out if she needs chemo too on Thursday.

Jesus knows,
Donna

Tuesday, September 13, 2005 7:08 AM CDT

**Nicholas' temp is up to 100.4 and he is really droopy...:(

Good Morning!


Ms Sherry came through surgery just fine with 5 by passes! She was sore and in pain but was doing fine! PTL!

Mr. Nicholas did NOT have to have a transfusion yet!!! His platelets are 12k, hgb was down to 7.8, ANC was 490. Overall, he still has some diarrhea though and we cannot re-start the meds yet. He is still very demanding and definitely has some "roid rage" going on! My gut feeling is this medicine IS going to work if we can find the correct dosage.

****ANNOUNCING**** Nicholas' namesake came into the world yesterday at 2 pm. EVAN Tyler Wesley Mullins was born to Amanda and Jared Mullins weighing 8 lbs, 6 oz and 20" long. Welcome Baby Evan! You are already loved!

Yesterday was also Grandparents day at Spencer's school! Mamaw and Papaw were both a little under the weather but recouped enough to attend! Spencer was in 7th Heaven! They ate lunch, read a story to him, and checked him out of school to spend the day with them! Papaw sneeked in a Hershey bar too! Of course, Spencer was all smiles!

Pray for all the little chilren battling illnesses. Kyle from Ohio really could use your prayers. Avery earned her little wings, please remember this family too. Pray for Nicholas too.

By God's Grace,
Donna

Friday, September 9, 2005 10:30 AM CDT

**Please remember my cousin, Sherry Browning Mullins, she has to have open heart surgery on Monday, the 12th.

Hello,

Yesterday was Spencer's first field trip! Of course Mom had to go and get photos! We went to Ole MacDonald's farm! It was neat! They had lots of animals, including baby chicks and ducks! The Pre-K classes all went and it was a pure joy just watching the children! They were so curious and fasinated with all the babies! Then I got to check Spencer out and we went home early! Hooray!

Nicholas' cbc came back with his platelets at 14k! I guessed 15k! His hgb is 8.3. Waiting until Monday for a repeat, if we can. He is already coughing up some pink as of now and will probably have to be transfused with platelets during the weekend. I cannot imagine we can hold out until Monday! Hopefully, we can.

Severe diarrhea has subsided some but is still causing some problems. He is looking very anemic! Dark around the eyes and mouth, pale elsewhere. Very haunting to see and watch him deteriorate like this, gut wrenching and heart breaking. I truly didn't expect these reactions to the only medicine that is giving us any hope for a bone marrow boost. It never occured to me that he wouldn't be able to tolerate it. Don't get me wrong! We are STILL going to try to give it to him, once the reactions have stopped. We are going to begin alternating days for the medicine. If they have disappeared over the weekend, then I will begin the medicine again.

Saturday is the big day! BIRTHDAY! My baby will be 7 years old! Happy Birthday Sweetie! Our HERO in every sense of the word! What you have had to endure is beyond comprehension sometimes but you continue to do it with a smile and grace that is only comes from above. Thanks for teaching Mom! I love you with all my heart.

By God's Grace,
Donna

Wednesday, September 7, 2005 7:20 AM CDT

Good Morning,

Mamaw spent the night in the hospital! While there they had to give her insulin for her sugar went to 197! She hadn't eaten all day and ate all her dinner. I don't think she had any more episodes with her heart but I'm sure she will have to be monitered for a month to be able to catch them. Her blood pressure dropped down to 90/45 and went to 151/67 so it was bouncing around. She was furious with me for calling her dr! Hey, better to be safe than sorry! She didn't want to go to the ER or stay in the hospital at all! Then she started crying and said, "Lord, I think of poor little Nicholas and how he has to stay in the hospital all the time!" Her face was flushed and she was really pale around her mouth. It may be one of her medicines though. Please pray for her.

We went home to a load of birthday packages!! Thank you all for brightening up a couple of little boys evening! Spencer was a little quite until he realized that no one forgot him! He was so sweet. Thanks to Maryann Y, they loved the Batman sticker books, Debbie H for the box of goodies and Batman masks, and Alan and Charisse for the Australian goodies! They loved them! Thanks Racquel for all the cards that contine to brighten up their weeks!

I do believe the Anadrol/Oxymetolone's side effects are developing. Nicholas is very emotional and easily hurt. He wasn't as grumpy but will cry at the drop of a hat! He is breaking out on his back too. He want anyone who touches his back to scratch it! Just like his Mamaw!
I pray the bone marrow responds as fast! Wouldn't it be wonderful IF on Thursday, his platelets or hgb were to go up! Oh, how that would thrill my heart!

Last week Nicholas told Frances, "My first born son will have this disease that I have too! I pray all the time that I will have children." He just started this conversation up out of the blue! She told me yesterday, she couldn't talk about it before! Oh, this broke my heart! I didn't even realize he was even thinking along those lines!

Praying for my baby, for a cure, for life.
Donna

Tuesday, September 6, 2005 8:02 AM CDT

**Please pray for Mamaw, she is suppose to go to the ER! Her heart is having some irregular fast spells. I called her dr this am and he sent her to the ER. If she will go.

**Nicholas platelets are down to 30k, hgb is 8.5!

Hello,

We have had a very hectic weekend but are still wonderfully blessed beyond measure. Mamaw's family had their Davis Memorial this weekend. Great food, birthday blessings, good fellowship again!

Sissy Bear's son, Michael and his family came from Arkansas to visit this weekend too! Their son, Brandon, tried to spend the night with us but the machines were too noisy and he went home at 11!! They had a great time playing together though. He is so cute! Spencer didn't like me giving him any attention though! It was funny!

Saturday night, we started the Oxymethalone! 2 doses later, he woke up GRUMPY! Mamaw asked him how he was feeling and he told her grumpy! She wasn't expecting that and burst out laughing! He was in an arguing mood too!

He saw a bunch of four wheelers going for a ride and fussed and fussed because they (Lena and Larry) didn't come to see him! I mean FUSSED! Lena, you are in trouble big time! Steroids and no visits mean YOU are in trouble, so look out! I couldn't help but laugh! He then told Mamaw all about it on the phone and told her to tell you all to come and see him. He thought you were going down there! It was too funny.

The boys really had a good time helping Dad gather corn yesterday! They were so precious! Spencer just needs some more practice turning the tractor with the trailer attached! He dumped a load of corn! He needs to slow down! That is what we did yesterday, put corn in the freezer! We had a taste test for dinner on Sunday and it was Ummmm-Ummmm good! Hungry yet? Yummy!

Ms. Clara is now home! Yeahhhhh! Praise the Lord! She is feeling great and was suppose to come over but didn't! She wanted some corn too! Pray for them as they go back to dr sometime this week and will get the reports on the the lymph nodes. She is so strong in her faith! Bless you Clara, you are an inspiration to me!

Don't forget to hug your babies extra long and kiss them twice! It's so important to let them know how much you love them!

Prayers go up and the Blessings come down,
Donna

Friday, September 2, 2005 11:21 AM CDT

Hello,

Nicholas was totally shocked and hid his eyes when he saw the Wild West theme quilt! Then, he smiled from ear to ear! Spencer was thrilled too! Mamaw, Papaw, and Sissy Bear didn't know what to think either! Sissy wanted it because the little indian that was on it! It was totally needlepoint! With horses, indians, cowboys, western theme and absolutely gorgous! Thank You Happy Quilts! Make a Child Smile! You all made an entire family smile! Jeff thought it was really nice too! It was great fun for all to see where the squares came from! Nicholas' teacher loved it too! Nicholas was so proud of it! They both crawled under it for photos! I'll post when I can get them smaller! What a highlight for his birthday too!

Nicholas and the OT, Alicia just happened to create a horse collage yesterday too! How fitting! To be on the receiving end is totally different than I'm use to and makes me realize just how much effort went into the quilt and it is very humbling as well as uplifting. I really need to be more diligent in sending cards and gifts to help brighten others! I'll do better!

I spoke with Ms Clara and she sounds wonderful! She is laughing but not too big! She has 28 clamps in her tummy! How she can go with very little pain meds is nothing short of miraculous! She is definitely a woman I admire! God Bless you Clara! Praying those lymph nodes are negative!

Nicholas has Frances trained already and is having a great day today! He was laughing and playing! Feeling much better with his new Mic-Key button!

Spencer has had his first heart break! Cassie wouldn't hold hands with him and it broke his little heart yesterday! It is so precious and heart breaking at the same time. I told him that I heard that she said he was her boyfriend! That brought a huge smile to his precious little face! Oh, to be so young and innocent! Pure little angels!

God is good! His grace is sufficient,
Donna

Don't forget to pray!

Thursday, September 1, 2005 8:03 AM CDT

Good Morning!

We are home! Thank you for your prayers! We are blessed beyond measure that is for sure and thank God for safe travels and enough gas to get home on!

Nicholas had a really tough time during the g-j tube change. I had to hold his arms during the process and tell him every little move the dr was making. He screamed continuously until they put the new one in. The dr was hateful and didn't have any bedside manners! I plainly told him that he was scared, the stoma was tender, and he was afraid it would hurt. The dr said he understood and then shut up! This is the same dr that put the first one in! He hadn't improved at all! After the new one was replaced Nicholas dramatically sighed, let his tongue hang out, arms hang low, and then smiled really impishly and said, "Thanks Doc!" He was much nicer than I would have been!

The platelet tx went really well and very quick! No problems there and he had Ms Emily again! He stole her heart and definitely put her in a good mood! She couldn't believe how polite he was. Dad took Spencer to eat breakfast and then up stairs to play in the playroom while Nicolas was being tx.

They did really well this trip! I'm so proud of them. I love to hear their constant chatter! Spencer and Nicholas slept for a couple of hours on the way up to Cinci! They were wired and Mom and Dad were exhausted! Jacy, Jo, and Krisstina came over and they played with the boys! Jo asked, "Don't they ever get tired?" Spencer went to sleep pretty quick but Nicholas was after mid-night going to sleep! He was keyed up! They wanted the girls to come back over the next night too but they had homework! It was good to see them again!

I do have a prescription for Oxymethalone. Dr Harris doesn't feel it will work though. God can make it work! Pray that it works...that Nicholas' marrow will respond to it and start making cells again.

Ms Clara Moore came through surgery but the epidural came out last night and she was in tremendous pain. The dr feels it is outside the colon wall and when the pathology report comes in on the lymph nodes, they will discuss chemo. Please remember them in your prayers.

My aunt Louetta came through surgery with flying colors too! She had a cancerous kidney removed. Please remember them too. She lives in Oregon.

Remember Ronnie Riner, he also had cancer surgery on Monday. Please remember them in your prayers.

God's grace is sufficient,
Donna

Tuesday, August 30, 2005 8:41 PM CDT

Sissy Bear here! Just a line or 2 to let you know what is going on. Yes, Nicholas had to go to Cin. to have Micki-button and G-J tube replaced. He was transfused at 8:30 A. M. and the other at 2:00 P. M. He was ok this eve when I spoke with Donna. On the otherhand, Donna sounded very tired. Please remember them as they return home tomorrow.
Thanks for prayers and concern.
Love,
Sissy Bear

Monday, August 29, 2005 8:29 AM CDT

Hello,

The drama continues! There is formula in Nicholas stomach! There isn't suppose to be! I'm devastated! I don't know if the j-tube has backed out or if it has ruptured between the two tubes. I have spoken to someone at Cinci and waiting to hear what the decision is....we may be going to Cinci!

We had a great weekend. Strouth Lane Memorial, family reunion with lots of family, good food, and fellowship! Next weekend it will be the Davis Memorial and Nicholas' Birthday Party! We are just combining the two! So Sunday will be the day! He wants Batman and even said, "I wonder if they have batmobile candles?" He saw some little car candles and thought of batmobile candles! Now I'm on a quest for batmobile candles!!!

Nicholas' bloodwork will be back hopefully before noon. He was really pale and coughing up a tinge of blood. His mic-key button is still loose and bloody around it too. It is real tender and he protects it constantly! I know his counts are down and he will probably be transfused.

Wake up Sunshine, it's school time! That brought smiles to my baby's face this morning! Last night, he said he wasn't going to school but this morning he was all smiles and got up immediately! Telling me about a snake and a racoon! He was dreaming! So sweet and precious. Yesterday, he and his cousins were playing in this small tree and a limb broke. He hit or scraped his head on the pavement and now has a knot on his head! Scared me to death and we held ice on it for most of the evening. I asked him if it was sore this morning and he felt of it and said, "Just a little bit!" He is such a trooper.

Will update more when the cbc results are in. Nicholas is very tired this morning. He told Frances on Fri, "I'm so exhausted!" He is this morning too. He just never gives up though.

For whatever I have to face,
God gives me the Grace,
Donna

Friday, August 26, 2005 8:58 AM CDT

Hello,

Long one yesterday, short one today! Nicholas' ANC on Monday was down to 210! I wouldn't have taken him to school if I'd known in time. I know he had his G-CSF to help though. He had a rough day yesterday. His Mic-key button is loose and I'm afraid it will have to be changed. He was afraid that Frances was going to take it out yesterday so he was upset most of the day but wouldn't tell her! I tried to add more water to the balloon but it didn't help much. We may be going back to Cinci before the month s up! Just something else to worry about!

Spencer had another good day yesterday! He is eating much better! I'm so glad. Frances had meatloaf, mashed potatoes and green beans for our dinner! Spencer ate two helpings of potatoes! Thanks Frances, you did great! He is going to blossom! Speaking of blossoming, I have photos of my crepe myrtle that are gorgous! The little boys in front of it are!!! I'll post them sometime! Whew! I'm behind already!

I may have to put them in an ablum!! That would be the fastest for me. And since I have oodles of time, I can....! Ha!

We haven't started the Oxymetholone yet...Dr. Harris hasn't confirmed yet...? We are continuing Halotestin for another week. No reactions yet. No miracles yet but they are coming!

Waiting on our miracle,
Donna

Thursday, August 25, 2005 7:16 AM CDT

Hello,

Well, it happened! Spencer hic-cupped! He wasn't feeling the best and wouldn't participate in circle time and then refused to ride the bus home! He wanted MOM! This was Tuesday evening. We got in the van and he wanted to know if I missed him when we took Nicholas to the hospital one time. Of course, I told him I missed him! He asked, "Every night?" I told him I missed him every second! Oh, how this hurt my heart! After an evening of cuddling and playing, he seemed much better. Monday was the first long day, they had previously been on a heat schedule. He slept really well and ate a good breakfast and then had a much better day yesterday.

I didn't have a sitter so I took Nicholas and we had lunch with him! This tickled him to pieces! Yes, I took my camera! He smiled so sweet when he saw us and just about dropped his tray trying to wave and say "Hello Brother!" Precious! Then, I took Nicholas up to visit his class. Lots of curious 2nd graders! We then caught Spencer's recess and they played outside on the playground! We told Spencer good bye and went to Nicholas' gym class! He didn't have on tennis shoes and couldn't participate! Thank goodness! They were some that were really rough and wouldn't have been able to play that rough with Nicholas. Anyway, the little girls that had on flip flops or sandles recieved a lesson on bone marrow, mic-key buttons, and I answered a zillion questions about Nicholas hands! Why didn't he have thumbs? A couple of times this came up and I told them that he was born that way. After it came up again, I told them that was the way God made them. They were so sweet and curious. Mothering him and petting on him. Trying to be the one who sat beside of him! I told him to hug them and I'd take a picture. He said, "Mom, I don't have that many arms!" They thought that was funny! Nicholas started to tire so we left, to another surprise!

I drove Nicholas to the Library without saying anything! He wanted to know where we were and I asked him what the sign said. He said, "Coeburn Community Library!" "Oh, boy! Are we going to see George?" Yes! Whoooppppeeee! George is an Iguana! Nicholas loved him! We walked back to the kids room and Nicholas said, "Wow, this is just the greatest!" He loves the Library! We read a book and then when we left, the Librarian fed George green beans! He wouldn't eat! "This never happens!" she said, "He always eats!" Nicholas told her to pet him and he would eat! Guess what happened? George loved the petting, closed his eyes, and went to sleep! Nicholas laughed! We then went home and I started his GCSF, neupogen! Whew! What a day! But it's not over yet!

Now for the ending, I drove down to the end of our road and let Nicholas ride the bus home with Spencer! It was about a mile! He loved it! Spencer hit the door, smelled fresh baked corn bread, and ate like he was starved to death!

I thought it was the ending! After all of this, Nicholas started school! He didn't do very well until I told him to work really hard for Ms Hatcher! I guess he was a little tired! Spencer then sang "5 Little Monkeys!" for me and let me know that he didn't sing during circle time. "I just want to sing for you Mom!" Yes, that made me smile!

Hang on a minute, it isn't over yet! The GCSF must have kicked in for Nicholas got his second wind! It could have been because it was bedtime! He decided he wanted to sing! To the top of his lungs he sang,
"We've got the Power in the name of Jesus!
We've got the Power in the name of our Lord!
Though satan rages, we cannot be defeated,
Cause we got the power in the name of our Lord!"
Of course, we had to call everyone and he sang it over and over! Kim, he wanted me to call you but by that time it was going on 10! So expect a call tonight!

Whew, I'm tired just remembering! LOL! It was late before he finally settled down! He didn't want to go to sleep because he was afraid he would have a bad dream! He had one on Monday morning. I had to pray with him and ask Jesus to let him have good dreams! Then, he was afraid someone would come through the door! I told him that Dad locked the door! He said, "What about a ghost?" SISSY BEAR!!??? Those ghost stories are going to have to stop! You just about got called again, late last night! Too funny!

Thanks for sticking though this long update! Hope you aren't tired!!!!

Remember Daniel Baker, scans showed it hadn't spread as much as they thought but it is in his spinal fluid and lymph nodes. Please remember them in your prayers.

Blessings and Bear Hugs,
We've got the power, in the name of Jesus,
Donna

Tuesday, August 23, 2005 7:11 AM CDT

Prayer Request*
Please pray for John Daniel Baker. Son of John and Sheila (Fleming) Baker.
He has been diagnosed with Burkitt's Lymphoma. This is a very rare and
aggressive form of cancer. He is currently at St. Jude's Hospital in
Memphis Tn. He is a 2nd grader at Clintwood Elementary.


Hello,

Still reeling from the jet lag and we didn't fly!!! I think I'm emotionally drained. Too many things happening and trying to deal with it all. Mary's Mom, Clara Moore is having surgery for colon cancer on Aug. 31st. Please remember them in your prayers. I have found another babysitter, Frances, she started training yesterday! I do believe in miracles! She is familiar with trachs and feeding tubes! She was also praying for a job! God is GOOD! Now, if I can get back on track, I'll make it through all of this too! Mary is having a hard time dealing with leaving the boys too. She is like a sister to me so she shouldn't think she is leaving for good! I don't think Nicholas would let her do that either!

Now back to our trip, on day one we stopped at a drive through safari at Natural Bridge, VA, SAFARI, that was absolutely fantastic! I could hear Nicholas giggling and Sissy Bear captured lots of photos while we fed them from buckets out the window! It was great! The boys LOVED it! I'll post some photos when I have time. Then, we drove on to Hershey! Yes, we took them to Chocolate World! Spencer was apprehensive at first but thoroughly enjoyed the tour! One photo shows his excitement really well! It was really fun! Then, we stayed in NH and met three former volunteers at Camp, Mary, Julia, and Megan. Kali, Megan's friend came with her and she is a sweetheart too!
See why Kali is smitten??? The boys had been cooped up in the van and really enjoyed the balls that the girls brought to them. They played Hide-n-Seek and Kali put Nicholas up on the sink. Megan pretended not to see him and he cracked up! I can't wait to show you that photo! It is precious! I told you it was precious!

I'll break this journal now, so it isn't too long and boring! BUT before I go, Nicholas' cbc yesterday revealed platelets already down to 88k (tx on FRI), and hgb down to 9.5. Remember us in your prayers as we are going to try Oxymethalone next and it can have lots of side effects. Pray they are minimal but that his marrow will respond to it.

Tanya, I just found your entry in the guestbook and it broke my heart! God is full of miracles and I'm thrilled you received one too! That encouraged me so much! You are a sweetie to want to give it away but there are plenty to go around I'm sure. We pray God gives you a double portion!

Blessings and Miracles!
Donna

Monday, August 22, 2005 8:17 AM CDT

Hello,

I'm very emotional this morning! Rough morning? No, actually going very smoothly! Spencer was up early, didn't get upset with me leaving first! He was getting ready for school and going to get on the bus!!! It was really hard to leave first! Dad stayed this morning to get him on the bus and I know that is working good but it just wasn't me! I really miss my baby. He is doing great! He rode the bus Friday to and from school without a problem! He loves school!!! I'm hoping this will be good for him. Something special just for him!

Nicholas' new volunteer girlfriend, Diane Tager wrote a poem and I think this captures their relationship really well! Let me know what you think!

A prayer for Nicholas

His name is Nicholas, the one grisly bear
A six year old boy filled with such flare.
His smile stretches from ear to ear
Filling a whole room with laughter and cheer.
If you have been blessed to encounter this boy
You know of his unbeatable spirit and joy.
You know of his dimples and charming good looks
And how he just loves when you read him books.
Stories on dinosaurs, teddy bears and dogs,
Spooky ghost stories and tales of frogs.
And as I read he would wrap his arm around mine
And when each story ended his face would just shine.
At the end of each book the request was the same
“Read me another one” he would proclaim.
We must have read 40 stories in all
But the characters and names I could never recall.
All I remember is the joy on his face
And the warmth and love in his cuddly embrace.
So Lord now I lift up before you this prayer,
For a spirited boy affectionately called grisly bear.
I pray that his pain would lessen each day
And that you would bring a miracle his way.
That you would put his family at ease
And give doctors the knowledge to beat this disease.
For his family, I pray for blessings galore,
And a renewed hope like never before.
I pray for strength as they continue to fight
And that they would always keep you in sight.
It has been a blessing to meet people so kind.
Families like theirs are very hard to find.
For each person who reads this I have one request
For a little boy who I just think is the best…
Pray that his smile would never fade
And through it all he would not be afraid.
Lord, this is my prayer for Nicholas tonight
A little boy putting up such a big fight.

Diane Marie Tager
August 18, 2005

Thank you Diane for making me cry at work!!!! Again!

Pray for all the children in transplant or trying different meds, treatments to cure a disease. Pray for Maria. Pray for va/cody as they are going through thier loss.

Blessings and Bear Hugs,
Donna

to be continued! stay tuned.....

Friday, August 19, 2005 3:05 PM CDT

hello! Sissy Bear here!
Nicholas had platelet transfusion this morn. in record time!!! They were in and out in 21/2-3 hrs! the way it should go, right?
Well, we have made it back from Camp Sunshine with colds and all! Yes, Spencer had temp on the way back; now he has a runny nose. Nicholas, too, plus he coughed all night. Donna had his lungs x-rayed today and she is waiting to hear from that.
I have it, too; I think mine is a sinus infection. I'm alergic to perfume and it is impossible to avoid all the time. I haven't gone back to work yet; look out Monday!
Yes, we met new people from all over; it is a small world.
I know you want to hear from Nicholas, but I want to share this with you, too. Fri. night at dinner we were seated with the Flynn family. The mom, Doreen, and I began talking. She told me about moving often because her husband is in the Navy and has been for 12 yrs. I mentioned that my son, Michael, was in the Navy for 4 yrs.(1992-1996), but he didn't re-enlist. She looked at my name tag and asked Michael Mullins from VA? stationed at Jacksonville Fl, etc? I said yes, yes,...! She said my husband, Steve, and Mike were good friends!!! Can you believe this happened? Is this wild or what? When Steve called Mike and told him that he was standing beside his mom, well.. you can imagine....Mike could not believe it, either!! I am so glad that I met them; I am not glad that they have 3 children with FA, but it was a pleasure getting to meet them. They have 5 beautiful children.
Well, it is like this...Camp Sunshine Volunteers are the greatest; they give their time and energy to make the families feel comfortable, to feel at home. They take the best care of the children; parents are comfortable leaving the children in their care. They make each child feel special. This love comes from on the inside. Without this beauty shining from inside, this would be impossible.
You would not believe how strangers could feel like family in 5 days. It is not easy saying good-bye on that last day.
Yes, not only do we make new friends, the family just gets larger.
Continue praying for our "family".
Love,
Sissy Bear

Thursday, August 18, 2005 9:08 AM CDT

***CBC is back! Platelets are down to 12k, and Hgb is 10. That is all I have now. I'm sure he will be transfused, as he is coughing up blood and has some around his mic-key button! He is also running a low grade temp!
Remember us in your prayers.

Good Morning All!

I don't even know what day today is! One thing I do know is that my baby started Pre-K this morning! He did great! He has developed a cold and didn't really feel well but still did a lot better than I!!! I have a smile plastered on my face and am so thankful no one can see my heart! His teacher, Ms. Tabitha Long, gave the Mom's a survival kit! A pkg of tissues and kisses! I looked into the bag and just about lost it! Of all the things, chocolate kisses! My baby loves them! I told him I would have to leave when the teacher told me too. He said, "Mom, don't listen to them when they tell you to leave!" I guess it helped because his back was to the door and he couldn't see me leaving! He is excited and wants to ride the bus home! We'll see!

We arrived home late last night from Camp Sunshine! Overall, it was awesome! We met and put faces with names! It was great to meet Charisse and she sings beautifully! I want one of her cds! It was great to meet eveyone else too! Nicholas and Alessandra danced the night away on Masquerade night! It was great! When the song ended, he just fell into her arms and wrapped his arms around her for a special hug! It was so sweet! No camera! My disk was full! I will have to unload them at some point! Nicholas kept saying, "This is just the greatest!" He LOVES Camp and talks about it all year long!! Nicholas did sing in the talent show, "You Are My Sunshine!" His special "new" friend is Diane Tager! Thanks Diane and all the rest of the volunteers for making CS a very special place in our hearts and especially Nicholas and Spencer's! Karen, thank you for helping Sissy Bear so much and all that you did for us too! Joel, you continue to bring smiles to my two and all the children. Thank you. Thomas, you also continue to brighten the boys lives and I also think you have stolen Alex's little heart! It was so precious! She is "in-love!" Thanks again!

Camp was bittersweet! No great news for the immediate needs but will eventually be good for someone else! No miracle for my baby, one we desperately need.

Maria did get to go to camp and LOVED Sissy Bear's fudge! Maria, it was wonderful to see you again and thank you for answering all of Nicholas' questions honestly. I, too, was amazed at his questions! WE LOVE YOU! Thanks for the gifts!

My babysitter, Mary, her mother has colon cancer. Please remember them in your prayers. Her name is Clara Moore. She needs a miracle too. I'll try to get set up at home and update from there. If I can't, Sissy Bear will for me. Hummmmmm, I'll have to be more convincing and tell Sissy Bear, "I'm GREAT!" Do you think she will buy that?

Still praying for a miracle,
Donna

Monday, August 8, 2005 8:29 PM CDT

Hello, everybody! Sissy Bear here.
Nicholas had blood work done today. His platelets are down to 10 and hemoglob. is 7. something. He goes tomorrow for transfusions, both platelets and red blood cells. It will be an all day process for both.
Please pray for him; we would love for God to work a miracle, but God knows the future and knows best. Please, please lift my little sister, Donna, up in your prayers. I have never seen her this way before. She doesn't say anything except, "I'm ok," but I know my sis. Her voice tells me differently. I can't help her, but God can give the strength, grace, and comfort she needs.
We often wonder why lots of times, but, as I've heard 2 or 3 times within the last 2 days, trials gets us to where God can use us. He is in control and molding us into what He wants.
Sissy Bear

Friday, August 5, 2005 6:28 AM CDT

Hello,

Nicholas' cbc came back with platelets at 36(I guessed 40!), hgb=8, and anc of 2166!!! We will be transfusing packed red cells AND platelets on Tuesday to fill up his tank for Camp Sunshine! He will be so bouncy and will probably sing all the way! It is unbelieveable to see him after a red cell tx! Marvelous! Miracleous! He gets so much energy, feels so much better, plays pranks on Momma, laughs, sings, plays, gets that sparkle back in his eyes, and that beautiful mischevious smile back! A red cell tx actually does give him "NEW LIFE!" I couldn't have chosen a better slogan! I know, it was a God thing and not a me thing! I sure didn't have the foresight to know all of this! Thank God He knows everything!

The prayers really worked! His temp didn't get any higher and his hoarsness is just about gone! Now, pray for him to not want to eat! He kept Mary in tears yesterday and wanted peanut butter on me! Yes, I broke down and gave it to him! He looks so pitiful and says, "I really want it now! I can't wait!" He went to Mamaws and ate some banana! Sissy Bear gave it to him! It's so hard to tell him no!

Spencer cried his little heart out when Nicholas wanted to go to Mamaws! I was going to clean out the van and he was so torn, he wanted me to go with them! So he thought he could stop Nicholas from going! He kept saying, "I'll miss you brother!" Shattered my heart to a million pieces! Sissy Bear came and Spencer crawled up in her lap and ended up going with them! Love his little heart, he is on an emotional roller coaster!

The other night, I heard something whopping something and went to check on them! I had been patting Nicholas back and Spencer decided he could do that! He was using a percussion thingy! He was beating Nicholas back with it! Nicholas loved it! Spencer said, "I'm beating his back too Momma!" I had to tell him to be easy and not pat so hard! It sounds really loud but is real soft! Maybe I have a little respiratory therapist on my hands! We all are RTs! LOL!

Pray for all the ones getting tests, treatments, transfusions, and transplants!

We will have a booth at the Cancer Benefit Concert, Sat eve at the Coeburn Middle School. Hosted by YOUTHRACE 2005! Pray for all the youth of our area, drugs are getting worse! Check out www.youthrace.net for more info. Services tonight too at the Lonesome Pine Raceway!

Blessings and Bear Hugs,
Donna

Thursday, August 4, 2005 7:15 AM CDT

Hello,

Notice the new home page photo! This is the one announcing the blood drives in Cincinnati! Nicholas is the poster child for their blood drives for a year! They have quarterly drives! This is the first time they have been in color too! I should have had this scanned in earlier! But anyway, I will leave this one up for a while!
I'll try to post the bottom of it later!

Nicholas is hoarse! I knew he was getting something but don't know what. His temp went to 99.4* yesterday evening.
His lungs sound horrible and I'm holding my breath that he doesn't get worse. To top all this off, the pump messed up last night. I had to use a flow meter for the first time but it was real easy! I didn't have a choice!

I cannot believe it's CAMP SUNSHINE time! It's here already! The boys ask everyday! How many more days Momma? Spencer's thrill is that Momma will be with him for a couple of weeks! He is looking forward to that. He just doesn't realize that he will be so busy at camp that he won't even miss me!!! Then he starts Pre-K! Boy, Oh Boy, I'm setting myself up for a heartbreak! I'm getting use to the idea that my baby is growing up but I think this will help him! He needs something that isn't shadowed by Nicholas but in a way, it still will be!

Everything is shadowed by FA. Families that say that they don't let FA rule their lives are doing a lot better than we are. But then again, Nicholas is probably a lot worse than most of the others, even when he wasn't in bone marrow failure!

Pray for all the ones in treatment, transplant, or transfusions. Remember the empty arms and broken hearted.
Pray for Nicholas and us.

Blessings and Bear Hugs,
Donna

Wednesday, August 3, 2005 7:44 AM CDT

Hello,

"Can I have a little nasty snack before I go to sleep?" asked Nicholas! I couldn't help but laugh!!! He knows exactly what to say! This is just another stall before sleep!!! He did eat about a quarter of a tube of yogurt! I told him if he cough up blue stuff, we would know what it was! About that time, he coughed and he said, "It's blue!" I looked and looked but it wasn't! He was seeing my blue gown!!! It was funny!

Mom and Dad really need sleep but with all the antibiotics going on, it makes it tough to get any sleep! Both take an hour to do and I actually start the first one early and then do the second one on the pump. It will beep and wake me when it's finished! If I did them in reverse, I wouldn't wake up! Yeah, right! Spencer was crying out for over an hour last night and again around 4:30! I'm very tired, exhausted I should say! I'm feeling totally washed out, drained!

Ms Kim came over and the boys had her sliding down the hill at Mamaws! It was hilarious! She would scream and Nicholas would just burst out laughing! He thought she was too funny! Spencer gets aggervated because Nicholas is a little scared to do something! So he tried to give him a little push, to help him slide down the hill! Nicholas just about panicked!! Then Spencer pretended to pat his back and was trying to give him a little push while patting! What a boy! Scared me to pieces but Nicholas finally slide down the hill after I showed him he could slow himself down with his feet! They had a ball! He was so proud of himself!

Nicholas looked really pale to me yesterday evening but we won't have a cbc until Thursday! I wished we had set it up for today instead of tomorrow. So far, his foot stick blood culture is negative! Praise the Lord!

Pray for Charisse, oceania/charisse, she is going into hospital and needs prayer. Pray for all the ones taking treatments, transfusions, or transplants.

Blessings and Bear Hugs,
Donna

Tuesday, August 2, 2005 6:54 AM CDT

******* August 1, 2005 *********
PLEASE PRAY FOR DANIELLE LESTER. Her mother works in the Courthouse. She found out that she has Acute Myloid Leukemia. That is the same type that Madison HAD! She is 19 years old. They have sent her to Charlottesville, VA. She will begin treatment tomorrow.
*****************************************

**New Photos!**

Hello,

Mamaw cooked Papaw's birthday dinner yesterday! It was yummy! He is 78 yrs young! The boys made him a birthday card and he loved them! I knew better than to even get him one! He doesn't look 78 or act like he is 78! Nicholas said, "Mamaw and Papaw are the greatest in the world!" I'm so thankful that the Lord has let them live to enjoy the boys. The boys definitely love their Mamaw and Papaw!

I'm feeling totally drained! Emotionally and physically! Dad is too. I'm tired, achey, head hurting and still have to pack!! I just cannot get into packing. I am normally on the ball but I think I need a fire lite under me to get me moving! I will pack something and then get into something else. Enough about me!

Spencer acted so shy in front of Sheena yesterday evening! He finally made it into the kitchen because I carried him in! Then, he wouldn't look her way! She came over and sit in the floor and talked to him! Then he wouldn't let her out of his site! It was too cute! He had to warm up to her! He had to give her good-bye sugars a couple of times! They both love her so much! She will play with them and they have a big time!

Remember all the ones in transplant, treatments, or transfusions. Pray for the empty arms.

You did run well, who did hindereth you?
Blessings and Bear Hugs,
Donna

Monday, August 1, 2005 7:55 AM CDT

Hello,

Where do I begin??? Friday evening, we went for a platelet transfusion! We were there for 3.5 hours! Great transfusion! Great time in and out! I was surprised! Guess I complained enough to get the ball rolling, for one time anyway!! They did a great job so I can't complain!

Nicholas' blood infections aren't sympomatic, no fevers, no anything! I think the samples were contaminated! I haven't heard from the foot stick yet!

Saturday evening, we took the boys to a park and they loved it! They didn't want to go home!

We did make it to church on Sunday. There was a young lady that gave her heart to the Lord. This was very uplifting and encouraging to me! Another one to pray!

Remember all the ones going through transplant, treatments, or transfusions! Remember Grover Osborne and his family, he lost a son-in-law a couple of weeks ago and now his daughter was in an auto accident and they found her a couple of days later! Remember them.

Blessings and Bear Hugs,
Donna

Friday, July 29, 2005 7:17 AM CDT

Hello,

I received a call yesterday from the home health nurse and she said that Nicholas blood cultures came back positive again. I had to take him in for a blood culture taken from a vein. It took two sticks but she managed to get enough for the culture. Now, he has two bruises! Nicholas screamed! Spencer ran! Mom melted! Nicholas said, "I didn't know I could squall so loud! Ha! Ha!" He did on the first time but was so brave and held still on the second stick! My legs felt like jello when we left. It seem like the hallway was a mile long! I have never been so weak! I hate to see him in pain! I told him that he could have anything or go anywhere for his treat! He could have asked for the moon and I would have tried! He wanted to go to him Mamaws! That is where we went! She was working up beans and putting them in the freezer! I ended up stringing beans for a while! She played with the boys!

I felt so sorry for Spencer too. He hid behind the chair and then couldn't stand it and had to watch! He slapped his hands over his ears and said, "I'm going out there to sit!" He couldn't stand Nicholas screaming and crying! He said, "Tell Mom, my ears are hurting!" to one of the ladies there! It was funny! He prayed for Nicholas and was trying to encourage him! He is so precious!

Nicholas is definitely getting a transfusion today. He will also be transfused again before we go to Camp. Get his little tank full so he can enjoy his time there. Off to the circus we go, I just don't know what time it will be. Please pray the platelets are available.

Remember all the ones in transplant, treatments, or transfusion dependant! Remember Maria as she is dealing with her second round of cancer plus FA.

Blessings and Bear Hugs,
Donna

Thursday, July 28, 2005 7:54 AM CDT

Hello,

Nicholas platelets are down to 15k, Hgb is 8.7, and his ANC is 540! Barely above isolation! This slow process is getting three cbc a week! It is no wonder his hgb is getting low! He seems to be feeling better except the antibiotics are causing diarrhea! I told you all it was a vicious cycle! His right lung still sounds junky but his trach culture didn't grow anything! NOTHING! Thank the Lord! I keep saying his is so difficult! I told Mary that the xray looked clear and that it was probably viral! Exactly what the nurse told me yesterday, "It must be something viral!"

I had just barely gotten home and it turned really dark and we got a huge storm! Thunder, lightening, and a down pour! It cooled everything off though!

Spencer wanted to know the other eveing if I was going to go to school with him!! Then said that he wasn't going. This story will continue! Stay tuned! I think he will do great once he gets involved with the school projects. Just keep praying for me!!!

Remember all the ones getting treatments, transfusions, and transplants! I'm beginning to hate T words!!!!
Remember the empty arms and broken hearted.

Blessings and Bear Hugs,
Donna

Wednesday, July 27, 2005 6:08 AM CDT

Hello,

I think the pain in his left side yesterday was bowel! Not his lung! He pointed lower down in his tummy to me when I asked him. He still sounds rough in his right lung but the left one sounds much better.

He seemed a lot better yesterday evening and played in the sand while sitting in a chair! I won't let him sit in the sand. He loves it anyway though and has a great time. It was so hot outside that I wouldn't let them out until late and when we came in, it was still 90* outside! We were all wringing wet! Jeff and I hoed out the corn and he had been working in it when it was hotter. He looked drained! He is use to working in hot weather though.

Remember all the ones going for treatments, transplants, or transfusions. Remember the donors for blood and platelets too. Pray that more will get the desire to donate blood and platelets.

Blessings and Bear Hugs,
Donna

Wednesday, July 27, 2005 6:08 AM CDT

Hello,

I think the pain in his left side yesterday was bowel! Not his lung! He pointed lower down in his tummy to me when I asked him. He still sounds rough in his right lung but the left one sounds much better.

He seemed a lot better yesterday evening and played in the sand while sitting in a chair! I won't let him sit in the sand. He loves it anyway though and has a great time. It was so hot outside that I wouldn't let them out until late and when we came in, it was still 90* outside! We were all wringing wet! Jeff and I hoed out the corn and he had been working in it when it was hotter. He looked drained! He is use to working in hot weather though.

Remember all the ones going for treatments, transplants, or transfusions. Remember the donors for blood and platelets too. Pray that more will get the desire to donate blood and platelets.

Blessings and Bear Hugs,
Donna

Tuesday, July 26, 2005 7:49 AM CDT

***Blood is positive for something! Even though it could be a possible contaminant they are putting him on Gentamycin and Synercid for three days. He has also been hurting in his left side all day and after Mary gave him some tylenol and he had gotten some relief, he said, "Good going Mary!" He does this every time he gets full fledge pneumonia! Please continue the prayers.


Hello,

We went for a chest x-ray and sputem culture yesterday evening. Nicholas doesn't act sick and actually seems to feel better! I'm thankful for that! We are going to extend his nebulized Tobi for a few more days. Logically thinking, if he is getting worse on the Tobi, that means that something is growing in his lungs that the Tobi isn't killing. He will probably have to have some other type of antibiotic via PICC line! He has only been off antibiotics one month this year!

We stopped by Mamaw's house yesterday evening and she had a pot of green beans cooked, baked potatoes, tomatoes, onions, peppers with corn bread! All from their garden! It was delicious!!!! Spencer wanted corn bread with butter and I kept hearing this little "Hummmmmm!" He loved it too! I couldn't help but laugh! "Hummmm, Hummmm!" My little country boy! I found them all curled up on Mamaw's lap with a Bear Tale in progress and had to drag them away!!

We went to watch Dad clean up the mess from the flood at the church! During a recent rain, the water got up to the steps and brought in a bunch of sand and dirt! It was a big mess! We had just graveled the parking lot!!! The boys rode home in the backhoe! They were in seventh heaven! Dirt and all!

CBC yesterday revealed platelets down to 19k! Hgb down to 8.9 and ANC of 444! We will go for transfusion after another CBC on Wednesday. It is a roller coaster all the time!

Remember all the ones suffering emotionally, physically, mentally, and spiritually.

Blessings and Bear Hugs,
Donna

Monday, July 25, 2005 7:20 AM CDT

Hello,

Yesterday morning, Nicholas started coughing up blood. He stopped by the evening. He has been running a low grade temp but last night was back down to normal. His left lung sounds better but the right one is still rough sounding. Hopefully, he will get the junk out of there and get better!

Spencer is still a Spencer! He is so sweet! I will lip sync "I love you more than.....!" and he will tell me something back. Saturday, he said, "...more than a frog loves water!" I thought that was so cute!!! He slept better last night than he did Saturday night! He woke up this morning at 5 am and said, "Mom, I don't want pepper!"

We are getting blood work today. Friday, his platelets fell from 140k down to 44k. It was scary all weekend, trying to keep him out of harms way!

Remember Maria, she is bound and determined to get to Camp Sunshine! Pray that she is feeling well enough to go. She said, "I just have to go to CS, I just have be there!"
Remember the family of Frannie, she passed away yesterday. nc/frannie

Praying for miracles,
Donna

Friday, July 22, 2005 8:09 AM CDT

Hello,

I listened to Nicholas last night and his lungs sounded horrible! If he isn't getting pneumonia, I would be surprised! I hope its just the Tobi breaking the junk up and getting it out. He seems fine but that is how he will do! Goes until he can't.

We went to a baby shower last night. Nicholas' namesake to be, Evan, is due 9/19! They said 9/10 at first!!! Wouldn't that be wild that it was born on Nicholas' birthday! I found a sleeper with the name Cuddly Bear on it! Therefore, Evan will be dubbed Cuddly Bear in Papa Bear's den!

Hope you all have a wonderful weekend!
Remember the children and adults that need lifting up in your prayers. nc/frannie took a turn for the worse this morning. Remember the Windham family, one just out of transplant, Mom just out of hospital, and one son killed in a car wreck! Pray for my little one! Pray for Maria too.

His Grace is sufficient!
Blessings and Bear Hugs,
Donna

Thursday, July 21, 2005 8:10 AM CDT

Good Morning,

Nicholas got the "wide-eye" last night and didn't get to sleep until after 11:30 pm! Yes, I'm tired this morning! Spencer slept well! He was still asleep when I left so that made it easier for me!!!

I'm still struggling with him going to Pre-K! I did get him a Spiderman backpack! He loved it! Nicholas wants one now! I wasn't thinking! I should have gotten him one even though he doesn't actually use one! I know! I know! You would do the same thing!

I am trying to pack for Camp Sunshine, with Marys help! Thank God for Mary! It will take us both to remember all that Nicholas needs! I have to start now in order to get it all together! I have a lot to pack up! It will take up a lot of space too! Whew! Talking about packed like Sardines, we will be! We will have fun though! I'm sure Dad is looking forward to the long drive!!!

The boys enjoyed playing Hide n Seek with Sissy and Daddy Bear! That was the first time in a while and they didn't want them to leave. The boys were in tears! I think Sissy Bear was too!!!

Remember all the children in transplant, just out of transplant, or on some type of treatment. Pray that Nicholas' bone marrow will respond to the steriod! I just got his 3rd months supply. If it doesn't work, I'm don't think he can stay on it much longer. Please, help me pray for miracles.

Blessings and Big Bear Hugs,
Donna
Donna

Wednesday, July 20, 2005 7:47 AM CDT

Hello,

Nicholas and Spencer found a Bob the Builder Play Doh set and had a great time indoors yesterday evening! It had been raining and was too wet to go outside! Then, Dad went outside to work on some craft projects and guess who had to tag along! We all followed him! Too boring! The boys decided to ride the gator! Spencer got their hoe and rake and went to the muddest spot in the garden! Yes, you guess it! Nicholas followed suit and both had to have a bath before bedtime!

Nicholas, seeing Spencer eating their nightly yogurt, begged for some too. Of course, he begged long enough and got it! How could I refuse? This is the first time he has asked for yogurt since he has been NPO! This usually was his nightly ritual, eating yogurt! He did ok and didn't cough any out his trach! He is still coughing some, mostly this morning! I think he is getting a cold.

Spencer woke up this morning! Rough time for Mom! He was asleep 5 minutes after I left! Sure he misses Mom! It breaks my heart to have to leave him! It will break my heart when he leaves me to go to Pre-K too!

Please remember the Windham family, Devin is in Minnesota for his bmt and his brother, Matthew was in a fatal car wreck. This family has had a rough time lately and I know could use the prayers. His Mom just got out of the hospital too.

Praying for miracles,
Donna

Tuesday, July 19, 2005 6:42 AM CDT

Hello,

Nicholas is getting geared up for Camp Sunshine! He has talked about it all year long. I told him that Megan wasn't going to be there and he asked, "Is Mary and Julia going to be there?" I told him that I didn't know but didn't think so! He asked, "How about Joel, is he going to be there?" I said, "Yes, he will probably be there!" Joel, if you read this you had better be there!!!!! He and Spencer keep asking, "Is it August yet?" Spencer ran to the calendar and found "Camp Sunshine" on it and said, "There it is!" I can't seem to get in the packing mode yet! It will take me forever to get it all together but I don't seem to have my heart into it.

Will is going and Maria is determined to get there! It will be great to see everyone but I guess I'm worried about Nicholas' counts while we are there. We are going to try to get his transfusions the week we go if he needs them then. Hopefully, he won't need anymore! Yes, I'm wishful thinking! Nicholas' cbc yesterday was up because of the platelet and prc tx but his ANC was down to 152. That definitely has me bummed out today!

He is a little hoarse and sounds junky! He started coughing and sneezing last night! I told him it was playing in the sprinkler on Sunday! He shook his head no, then said, "I bet it was playing in the water that made me sick!" He and Spencer had a ball and enjoyed it so much! Nicholas actually got soaked, which is unusal for him! Yes, Mom had to run through it too! Then, I was their towel! They would get their face wet then run to me and dry it off! At least I'm good for something!!! Then, I put warm water in their little pool. They got in it and played a long time. It was hot and humid! You should have heard them squealing when they ran through the sprinkler! I should have caught that one on video! Heart memories!

Remember /visit/littlehannah, a precious little girl with FA going for transplant soon and has a cold now. Remember ga/maria, she has been bitten by a Great Dane! Remember fl/ty, he is out at Day 23! Blessings are still flowing from the throne!

My cup is turned up! Fill it up Lord with a miracle for my baby,
Donna

Monday, July 18, 2005 7:59 AM CDT

Good Morning!

Thanks Laurie for the Mickey Mouse Name!!!! It's adorable.

Also thanks for the prayers this weekend. Nicholas did have to have 2 transfusions...! Yes, it was "Two days at the Circus!" Arriving at the hospital Fri eve, first initial blood work was finished before we went up to the room. Then, it was 4 hrs later and nothing had been started! Needless to say, I was stressed, aggervated, and had a headache! I packed my stuff and told them I was leaving and then was informed the platelets were ready! I stayed for the platelets and we arrived home around 2:30 am!
Saturday, we went back! Yes, I'm brain dead! To start with, the RN, didn't clean the cap with Alcohol! Sissy Bear was the eagle eye while I was on the phone with the Fellow in Cinci! She motioned to me and I ask him and he said, "No, I didn't, I'm sorry!" SORRY? It's just my son's blood stream we are talking about! The life sustaining substance that flows through out his little body! It is no wonder there were major concerns about rods in his blood stream that we just did a culture for the day before! I'm furious! To the core! We didn't excape until 3:30 pm! Yes, an all day 2 meal event! The end result is a wonderful spunky little imp! Mischevious grin, sparkly eyes, pestering Mom is the greatest thing on earth to do! He was so wiggly I couldn't get his dressing back on his arm! I love to see him all juiced up! with life! Thanks to the donors! Platelet donor 7/11/05 that was O !!! Red cell donor, whomever donated this O blood, our heartfelt thanks! God bless each of you.

Dad took Spencer to VBS for the last night and we caught part of it but left for the transfusion. Spencer asked where we were and if Mom was coming back! He was satisfied then!

Friday evening when we arrived at the hospital, Nicholas said, "Mom, I love you!" I told him that I loved him too! He said, "The greatest gift you could give me is your love!"
Yes, it was total meltdown for Mom!

Pray for all the ones going through treatments, transplant, or testing! God is good all the time!

Blessings,
Donna

Thursday, July 14, 2005 8:19 AM CDT

Hello,

Nicholas counts were holding steady for the most part, down just a smidgen! His platelets are 13k and hgb is 7.3. We will recheck on Fri again. I'm praying they will go up.
We have reached a plateau and his counts just HAVE to start going up from here. If they get any worse, he will have to have more and more transfusions.

It's scary when their counts stay this low... very nerve wrecking! Pins and needles, shot nerves, and hair pulling is the mode we're in. Major praying, holding on to the knot at the end of the rope, all this equals to survival mode.

And we wonder why poor little Spencer is having problems! It's too much for such a little guy to comprehend. He dreamed the other night that I lived far, far away. This is his fears coming out and I've had to sleep with him the last several nights for a couple of hours during the night. He gets mad at me in his dreams and it breaks my heart. I know he is scared and knows that Nicholas is getting blood work more frequently. He said the other night that he didn't want Nicholas to go to the hospital. I told him that taking Nicholas to the hospital was what made him feel better and that we had to get help for him when he was sick. He said, "If you didn't he would get more sick?" I told him yes. Then, he said something about dying and going to Heaven. I told him that I hoped he stayed with us for a long long time and gets to feeling much better. Yes, I think he understands too much sometimes and knows what is happening.

Remember all of us in your prayers. Remember Sherline, Micah, Cameron's family, Maria, Ty, Jordon, Julianna Banana, Erin, Jonathan, Sammy-Jo, Annette, JC, Cody, Gunnar, Bethany, Will, Emma, Charisse, Frannie, Jo, Jacy, RachaelJoy, Jacinda, and thousands of others. These are just a few, a drop in the bucket! Remember the empty arms.

God is good all the time,
Donna

Wednesday, July 13, 2005 8:44 AM CDT

Hello,

We are getting a cbc again today. He is bruising more but was feeling a little better than the day before. He actually participated in the songs at VBS.

We took Destiny and Jessica with us yesterday and guess who got jealous! Spencer! He didn't like me playing with Destiny at all! He liked playing with her but didn't want me to.

If we go to transfusion, we won't be back in time to go to VBS, unless he is tx tomorrow. They haven't been there to even draw the blood yet, so it will probably be late when we hear. I'm getting anxious!

Monday morning, Nicholas told Mary, "I don't think I will ever feel good again! I think I will have to have a platelet tx!" Yesterday, Mary told him that he needed to take it easy and he said, "I know! I know! My platelets are low!"

Remember all the ones taking treatments and in transplant.
Remember us,

Blessings and Bear Hugs,
Donna

Tuesday, July 12, 2005 6:53 AM CDT

Hello,

No Transfusion!!! Platelets were 15k! Hgb was about the same 7.4! ANC was 740. Whoo Hoo! Hopefully, it will come up and he won't have to have one on Thursday. His Lymphs are getting higher and I know he is fighting something! That is why he is so droopy.

We made it to another VBS but Nicholas was a little droopy! Spencer was in a different group and when I told him he started petting on Nicholas and kissing him bye. It was so sweet and precious. They really enjoyed it and there was lots of children there. Nicholas wanted to go home and go to bed. That is exactly what he did!

Spencer had some fruit punch at VBS and it made him wild as ten buck two! He couldn't be still to save his life! It had to be the red dye! I won't let him have any tonight!
We would pass in going to the various activities and he would wave and blow me kisses! He is so sweet.

Remember the ones in transplant or on treatments. Remember Donna Hensley as she is going through some health problems. Remember the empty arms and broken hearted. God is good and a wonderful comforter. He is there when no one else is.

Blessings and Bear Hugs,
Donna

Need Directions?

Monday, July 11, 2005 10:30 AM CDT

**Update on counts: Hgb-same, 7.5, Hct 22, Platelets down to 13k but no transfusion at the moment.

Hello,

Nicholas has been real droopy this weekend. I guess that blows my theory that his counts are up. He is real pale too. He will probably transfused with platelets and red cells.

I'll update more when I get the results of his cbc today. Please pray for us, we really need prayer. If it could happen, it has. Monday all the way!

Pray for Maria, ga/maria. She really needs prayer. Alicia too, ks/aliciareed, headd injury. Pray for those in transplant or treatments.


Blessings and Bear Hugs,
Donna

Friday, July 8, 2005 9:39 AM CDT

Hello,

Please remember the Owens family, PJ was killed in a car accident. He had two small children. Also, Ruby Riner passed away, Please remember this family too.

Nicholas and Spencer enjoyed a birthday party for Tanner yesterday evening. We were worried about the boys running and knocking Nicholas down. We shouldn't have worried! I heard Spencer saying in a rather stern voice, "Don't run and knock my brother down! He's sick!" He is MR. Protector! How precious is that? Now, if only he would apply his advice to himself!!!

Nicholas was drooping for the most part but was perky during the party! He has EVERYONE wrapped around that little finger!

Please remember all the children going through transplant, or treatments, or abuse, or some kind of tragedy. Remember Maria, going through radiation and chemo. Please remember the Dingus family as they travel to Florida today! Remember the victims of the hurricanes, floods, and the tornados that are touching down.

Pray for us too,
Donna

Thursday, July 7, 2005 1:47 PM CDT

Hello,

I wanted to update after the results of the cbc were in. His platelets are down to 37k, hgb up a tenth of a point! Up we can stand! PTL! I'm grasping at straws but that is ok! I'll still take it! No transfusions today, I hope! Monday will probably be a different story! What if they have gone up on Monday! Wouldn't that be a miracle???? Oh, how I pray for that to happen.

Eating issues: "If I beg long enough, Mommy will give it to me!" Point taken! Facts stated! How could I not? It was homemade pizza last night and he loves to nibble on the cheese! Coughing starts, eating stops. He is great about stopping....at least he is getting a taste. Pizza with pickles, my first! Spencer wanted sweet, Nicholas dill. It actually was good! I added tomatoes to mine and Spencer said, "There are the eyes! Now we need a mouth!" and moved the pickles to make a mouth. He knew I alway make smiley faces on everything! He is so precious and sweet!

Spencer drew a whale and guess what was going on with it! He had it hooked up to IVs! He is trying his best to understand and process everything! I love that baby! "I'm not a baby!" is what he told me the other day when I wrote him a love note! He could read it!!!! He is great at articulating sounds to pronounce the words. It's just too cute.

Pray for all that can to get a desire to donate blood and platelets. Pray for all the people in transplants, on treatments, chemo or radiation..

Blessings and Bear Hugs,
Donna

Wednesday, July 6, 2005 7:43 AM CDT

Hello,

Guess who we got to meet over the weekend? Racquell, Ed, and Jae! We met the Sunday and had a wonderful time! It was so good to finally meet. They were the caretakers of Diane Keel, who won her battle with cancer and is now resting in the arms of Jesus. Yes, I did say won because she is free from pain and no longer has to take chemo and radiation!

I think they feel in love with my little boys again! They were already in love with them but meeting them was a heart slide! Nicholas had them all climbing a big hill, playing hide 'n seek, yes, eating out of his little hand! Spencer had a ball piling leaves on Racquell's head! Jae even climbed the hill! She has MS but, yes, Nicholas asked her to go with him and off she trotted! Ed played hide 'n seek with them too! I think they would have done anything that little booger asked! Spencer met a little boy named Brian from Texas and they played and played! I think Spencer followed him around everywhere! Nicholas would talk to anyone that came by! They are having a go-cart race in Williamsburg! They are trying to bring awareness to several different diseases, Breast Cancer, Neuroblastoma, MS, and FA! They are getting sponsors and the winner sends the proceeds to their cause! Racquell is for FA!!!! Would you like to sponsor her? The race is Friday and maybe Saturday! GO RACQUELL, GO! You have to win! I wish I could go!

Nicholas counts yesterday were so so! His hgb is down to 7.5 and will probably need red cell soon. We will recheck tomorrow! His platelets were down to 58, will need them by Monday probably! It is no wonder we are so tired! We can't stay out of the hospital long enough to gain any strength or sleep.

Nicholas said, "I'm so tired!" Yeah, right. He didn't get to sleep until after 11 pm! He slept better after he finally went to sleep and then Spencer had nighmares! He woke up and didn't want me to go to work! He was dreaming that we took Nicholas back to the dr. He woke up at first and was mad at me! Then, he didn't want me to get up, didn't want me to go to work, just wanted me to stay home with them! I was very late for work and came broken hearted. Crying doesn't help anything, just cleanses the soul. Screaming doesn't help anything, just gives you a sore throat! Praying is the only relief I have! Cast all your cares on me and I will give you rest, saith the Lord!

Pray for all the children in transplant, Ty, Jordan, Apryl, Erin, Devin and all that I can't remember. Remember all the ones taking treatments or on some type of medicine, Maria, Nicholas, and all the rest.

Doing a lot of casting!
Donna

Tuesday, July 5, 2005 8:33 AM CDT

Hello,

Yes, I broke over and let him eat! He wants to eat so badly. I know I'm shooting myself in the foot but how can I tell him know. I keep telling him that he isn't suppose to eat. He will do fine for a while but then he said, "But I'm hungry!" We have had a broken hearted weekend. He in turn, has coughed everything he has eaten into his trach! He will stop eating when he starts coughing but then it is too late. He keeps asking, "When can I eat?" It's hard to turn it 180d! Pushing food and then pulling it away now! We try not to eat in front of him but then he would be isolated! That isn't going to happen! Then I think of poor Jacinda, who is a teenager and cannot eat! It breaks my heart for her and her Mom. I'm going to have to buck up and get tougher! They want to do a ct scan to see if there is any structural damage to his lungs. He is coughing up lots of junk! That Tobi is doing the trick!

I see Sissy Bear informed you of the platelet transfusion! They had a hard time finding single donor 0+ or 0-, that is what he does better with. If you are either, please call 423-224-5886, Julia Davis and go donate. Thanks in advance!

VBS was over Friday night and the boys will drive me crazy this evening wanting to go back! I know, it won't take long! I feel like I've been hit by a Mack truck! Spencer was too shy to even get up in front! He turned pale when he entered the church! I felt so sorry for him! He finally sat on the alter beside of the song leader! He would do fine one on one but not in a crowd!

Pray for all the children and adults doing treatments! Maria has pneumonia but is getting to go home, please remember her. ga/maria

Blessings,
Donna

Saturday, July 2, 2005 11:21 PM CDT

Hello! Just a line or two to let you know that Nicholas is ok. He went for platelet transfusion Fri. It didn't take as long this time; the carrier of platelets had just arrived as we pulled in. (Yes, I went, too!) We arrived at 11:40 and left approx. 3:15. This was much better. I don't like when they have to stay til 3:00 A.M. Donna is exhausted and doesn't need to go day and night!!
As I said, I went, too. While Nicholas was getting transfusion, Spencer and I went to the park so he could stretch his long legs! What I think he enjoyed the most was watching a group break a pinata. He wanted to join in; he said he could break that thing! Now, he wants a pinata for his birthday!!!
Then we went to Wal Mart for a couple of Spiderman toys. No, I don't spoil them!!!
The day ended with the last day of VBS program.(Spencer's and Nicholas' own personal Santa was there in his everday clothes, but they didn't recognize him!! They just know him as Ken.) The highlight of the program was a solo by Nicholas!!! He sang:
"What a day that will be
When my Jesus I shall see;
And I look upon His face,
The One who saved my by His grace.
When He takes me by the hand
And leads me through the Promised Land;
What a day, glorious day, that will be."

Needless to say, there were lots of teary eyes! He is a little angel ablessing every day! Like I have asked before, "What did we ever do to deserve all these blessings?" Isn't God good?

Thanks for all your thoughts and prayers and being there for Donna.
Love,
Sissy Bear

Thursday, June 30, 2005 7:22 AM CDT

Hello,

CBC yesterday indicated the IV fluids were working but his potassium was still low! And the platelets were down to 10k. We will get another cbc today and it looks like a platelet transfusion is in order. I was pretty nervous yesterday at VBS with his counts so low. Nerve wracking after a down day equals total exhaustion, physically and mentally!

Nicholas woke up yesterday morning and the first thing he wanted was mashed potatoes! The fluids had him perky and a totally different child. Mary called me and said that he had asked for them about 10 times. I told her to bake him a potatoe and offer it to him but tell him to be careful that he could aspirate some of it. He said, "I guess I'd better pass!" He keeps asking me when he will be able to eat. I didn't realize just how much he did attempt to eat. We have fought for 6 years trying to get him to eat and I didn't realize just how much we said! Trying to not mention eating/food is very hard. Eating is even worse! He is such a trooper though!

At VBS, they take the children on a ride with the four wheeler pulling them in a trailer but I won't let Nicholas go because of the gas fumes. I didn't realize that this was bothering Spencer until last night. He said, "Why can't Brother go on the ride?" I explained it to him. We were in bed and he said, "Mom, I've got a plan. I'm going to build a wall there and then the fumes can go around the trailer and they won't hurt Nicholas!" I was amazed at his maturity or thought process of solving the problem. It brought tears to my eyes. He is so smart! I told him that was so sweet! He said, "You mean smart!" I burst out laughing then! He is always coming up with something and I love it! He does come up with the best plans ever! Precious!

Pray for all the children taking treatments, transplants, or testing.

Blessings and Bear Hugs,
Donna

Wednesday, June 29, 2005 7:52 AM CDT

Hello,

Well, another cbc later and we are on IV fluids for 24 hrs with extra potassium in it. Platelets were down to 15k, Hgb is down to 9.0, but ANC is ok.
We are now doing nebulized Tobramycin! I asked about it and the dr agreed that was ok to try. Thank God. He was anxious about it and wanted to know what it did. I told him it would make his lungs better! He said, "Then I can eat?" Yes, my feathers flopped! He is doing ok with all of this but Mom and Dad aren't. No one else is doing great with the eating issue either. Sissy Bear won't even talk to me about it! I know what she is feeling though.

Spencer is doing ok with it and knows everything that is going on. I know he is disturbed about all that is happening but is working through it pretty good. He is so precious.

Someone yelled "That little boy is using the bathroom!" Yes, it was Spencer! He said, "I went behind that old car!" He thought he was hid but wasn't! Too funny! I couldn't help but laugh! Oh boys! If you have only girls, you are missing a lot! Have a boy and things will never be the same again!!!! Gotta love em!

Pray for all the children going through treatments and transplants.

Have you said, "Good Morning Jesus?"
Donna

Tuesday, June 28, 2005 8:10 AM CDT

Good Morning,

Nicholas is feeling some better, PTL! His platelets came back at 18k so he didn't need a transfusion yesterday! I do believe the Halotestin is working, do I dare get my hopes up??? His levels came back that he was just about dehydrated. I knew he was and am trying to get fluids into him. His hemoglobin is 9.5 and his anc was 1100. He is feeling better and that is what makes me happy. We did have to change the way we were feeding him. We cannot put any baby food in his formula and may have to add fiber though. He did much better last night! I'm not getting the same amount into him but hopefully we will increase the rate more and more.

Sunday, Vacation Bible School started and Nicholas wasn't feeling well at all but would not think of staying home! Last night, he playing more and talking more. Spencer is enjoying VBS tremendously. He is in a separate group and the first night it killed me! He was fine! I wasn't and had a hard time being in a different place. He really needs to have fun on his own but it was difficult for me. It was all I could do not to go check on him every 5 minutes. I was in pure misery. I couldn't leave Nicholas for any length of time and was so torn. Spencer will not sing with the group but knows the songs! He is a little shy. He will probably open up tonight and then when they put on the performance Friday evening, he will freeze up again. He is so sweet and precious! Sunday night, he told one of the teachers, "I've got to go check on my brother!" She brought him outside and let him see what Nicholas was doing and then he was satisfied. I didn't know he even came out. I thought that was so sweet. He loves VBS and doesn't want to go home after it's overwith each evening!

Please pray for Maria, I received a prayer request on her this morning: Maria tried to call you this morning but the line was busy. She wanted me have prayers said for her because she started coughing up blood this morning and still has a low grade fever. She's very upset and worried. I guess her heart rate is very high too. If you could ask the prayer bears to pray for her, I know she would appreciate it.

Pray for all the children going through transplant, out of transplant, or on treatments.

Praying harder to defeat the devil,
Donna

P.S. If you live in the Tazewell area, go directly to jail on June 30th between 11 and 4!!!! The Blood Buggy will be there!

Monday, June 27, 2005 9:08 AM CDT

Hello,

This journal will be scattered! My mind is going in a thousand directions. Just to clear things up in a nut shell, we are trying to eliminate all methods of lung infections. 1. The first is to not eat by mouth at all! Yes, this is breaking my heart. No Chicken n dumplings! No M&Ms, yogurt, mashed potatoes, cornbread, green(chicken)soup, steak, chicken, brownies, fudge, or any food by mouth! I told him as gently as I could. The dr found blue coated bronchial tubes! and that was the M&Ms! He thought for a second and said, "I'll just tell everybody that I can't eat until I'm better!" He will not put anything in his mouth! He is the SUPER hero! I told him he could have water and ice and he finally ate ice last night!

2. They converted the g-tube to a g/j-tube. It looks the same as the mic-key button but has two low profile ports, one to his stomach and the other with an extention that bypasses his stomach and goes directly into the intestines.
So far, he isn't tolerating it at all. Diarrhea and nausea and I can't get the rate very high, resulting in loss of weight and dehydration. He looks so bad and isn't feeling well at all.

We are getting a cbc today and will post results when I can.
Jeff is feeling much better, it must have been a 24 hr virus.

We missed Spencer so much while we were gone but I don't think he missed us too much! Sissy Bear kept him occupied and that helped so much. He wanted to go back home with Sissy Bear!

Please remember all the children going through a medical situation. Pray for all of us.

Praying Harder to defeat the devil,
Donna

Wednesday, June 22, 2005 7:54 AM CDT

Good Morning,

Nicholas is feeling great! He has had a couple of great days and I wish he could have a great year, a great lifetime of laughs and giggles! He is back to being an imp again! With the twinkling eyes and mischevious smiles! He was a little stinker last night!

Spencer isn't eating well! He didn't eat much Pizza after I brought it home! He wanted it but...his appetite isn't totally back. He did eat some Milk and Bread! I asked him if it was better than chocolate! He said, "Yes!" I knew he was still sick!!! Then I put a piece of cake with choc icing on a plate, and then the big smile came back and eye brows starting going up and down! He is a clown! I love it when he feels good. He is rotten! But I was happy to see him full of life. I can't stand to see him sick.. That was the sickest he has ever been.

Remember all the children going through treatments! Remember Ty, fl/ty today is BMT day!!!

Blessingss and Bear Hugs,
Donna

Tuesday, June 21, 2005 9:06 AM CDT

Hello,

I received a wonderful email from someone that wished they could donate for Nicholas! That really touched me. Just remember if it doesn't go to Nicholas, it will still go to someone that really needs it. If you are able to donate, please do so, wherever you live..

Did you notice the ticker on the Fluoxymesterone? Yes, tomorrow makes a month! I hope and pray we get results soon.

Spencer is back to his old self! Including waking up and wanting Mom to stay home! Yesterday, it was Dad! There isn't enough time in the day for everything!

I hate FA and all it entails! I hate what it is doing to my son, my family, our lives! FA and different forms of any sickness that is terminal or only temporary can wreck havoc in a family. It not only affects immediately family but extended family and friends. Some people back off because they don't know what to do or say! Just be youself and be family. I thank God for my support system. We are blessed to have a praying family and I know they all are praying. Pray for our extended FA family too.

Bless all of you with health, happiness, and the desire to give blood or platelets!
Donna

Monday, June 20, 2005 10:17 AM CDT

Hello,

We had a wonderful weekend for the most part except for Spencer. He had a stomach virus and started throwing up around 2 Sat night and all day Sunday. He was in Dad or My arms all day long. That is the sickest he has ever been! It was horrible. Nicholas asked for a piece of paper and he made Spencer a get well card all on his own! It was so precious!

Spencer is feeling better today. PTL! Nicholas has had a great weekend! He was coughing some yesterday. I've noticed his WBC is going up and that means he is fighting an infection. We are getting another CBC today and will know the results today. His post transfusion CBC came back and his platelets were up to 217K!!! Oh, how I wished they would just stay there!

Hopefully, we will have a great week and trip to Cincy. Pray for test results to be good.

Pray for Maria, they are doing the feeding tube today. They didn't do that Friday! Pray for all the children going through transplant, post and pre! Pray for all the children on treatments or trial drugs.

The Miracle Maker is still making miracles,
Donna

Friday, June 17, 2005 7:07 AM CDT

Hello,

I'm sorry to say that we came back from "Heaven!" That is what Spencer asked Dad last night. When was Nicholas coming back from Heaven? Jeff hadn't heard the earlier conversation about Spencer, Mary got a dose of it during the day one day but Dad got it last night! IF that is Heaven, Lord I do not want to go!!! In case you didn't read yesterday's journal and have no clue where Heaven is, then let me tell you all about it!

Nicholas' version:
Heaven is where you walk in around 5:30 pm and register! If you are already an angel, you skip the meeting St. Peter at the gate to see if you are on the roll! You just have to notify God that you have arrived. Then, you go to another mansion and they take your blood. This must be a test to see if you really have Jesus blood and not there by mistake! Next, you are taken to your own personal mansion for eternity! In the comfort of your on mansion, you can do whatever you want, ask for anything and Mom will bend over backwards to get it! Water, Doritos, and M&Ms were on last nights buffet! There is a constant chatter of little people on Cartoon Network but Mom didn't think they were angelical at all! About a hour and a half later, they brought in a bag of ambrosia (platelets) and fed it to via my PICC line. Mom promised there were no PICC lines in Heaven, so something isn't quite right here! That took a couple of hours and by then it was around 11:00! Things in "Heaven" are really slow, no fast lanes, just a s l o w, nice pace. Then guess what they did! They brought in a bag of Jesus blood! I was so shocked, I must not have had enough Jesus blood in me! I guess Jesus told some angel to go donate blood for me because I was really feeling bad. I'm sure I'll feel so much better now! I was too tired to stay awake to see if it made a difference last night but watch out today! I'll wear Sissy Bear out! Then, I woke up again and we went on a ride but I don't remember much about it. The next thing I knew, I was back in my own bed, snuggled down and was back asleep in no time! This was around 3 am! I hate to tell Spencer but this felt more like Heaven to me! I still don't have thumbs, that's how I know it wasn't Heaven! They call it Mountain View, it must be the step before Heaven! I would love to give all of you angels a big bear hug for donating blood and platelets for me! I received O- platelets last night, there were no O . Mom said I was "Universal" and that means I can take a lot of different angels blood products! I've had 14 platelet and 5 red cells this year!! That means a lot of bear hugs!

Remember Maria today, she had the Port placed in yesterday and felt most everything! They had to give her more pain meds. She is having the feeding tube put in today. Please pray for her! She wants everyone to know she loves them and appreciates all the cards.

Blessings and Bear Hugs,
Real Heaven Bound,
Donna

Thursday, June 16, 2005 8:15 AM CDT

CBC results: Platelets-11, Hgb-7.5, ANC-1798. Yes, we are going for platelets and packed red cells.....no miracle yet but it's coming :D


Hello,

All I want for Fristmas is my two front teef!
Nicholas is definitely snaggle tooth now! Yes, he bumped Sissy Bear and knock the other loose tooth out! I was worried with his platelets down so low. Sissy Bear was singing that song above and Nicholas was cracking up at her. Yes, I captued it and will post it when I get them uploaded!

Daddy played tooth fairy this morning! Nicholas was so pleased and put his dollar in the piggy bank! Spencer thought of it first!

We are getting a cbc and I'm in hyper drive!!! IF we get his miracle, he won't need a platelet or red cell tx!

I'll keep you posted.

Remember Maria, she is having surgery this am for port and feeding tube. Pray for her.

More later,
Blessings and Bear Hugs,
Donna

Wednesday, June 15, 2005 7:52 AM CDT

Hello,

Nicholas enjoyed the cook out at Sissy Bears! He is so pale and it breaks my heart when he gets so tired. He was very nauseated most of the day yesterday too. He is still in good spirits and continues to smile. He is the energizer bunny, he keeps going and going! When we got home, he laid in his bed and said, "I'm so tired!" He looks so bad. When these children's count bottom out, they get "that look" that hits me in the pit of my stomach. Oh, how my heart hurts and my soul crys out continually for a cure.

On the way home from church Saturday night, Spencer wanted to know when his brother was going to Heaven. I asked him why and he said he want to visit him and see him with thumbs. Yes, it was heart breaking. Bless his little heart, he is trying to sort thimgs out and understand it all.

Nicholas has another cbc tomorrow and will probably need both platelets and red cells. Be sure to donate when you can, someone will need it.

Pray for Maria, she called and requested prayer that the Drs at Shands will realize she has FA and cannot take the high doses of Radiation and Chemo. She doesn't need that frustration right now. Please help me pray for her.

Pray for all the families going through a terrible disease that tears them apart in every direction, physically and emotionally. It's tough but if the family is centered on Christ, it can be re-united again! If the child goes to Heaven, the family will meet again one day forever to be with Jesus in Heaven together if they are Christians too.
Talking about a family reunion, what a day that will be.

Heaven Bound,
Donna

Tuesday, June 14, 2005 7:48 AM CDT

Hello,

Nicholas blood work results are: Platelets 30k, Hgb-7.8. No transfusion as of yet we will do another cbc on Thursday and by then he will probably need platelets and pack red cells! I hope and pray that the blood products are available.

He didn't cough up any more blood but his secretions are real thick. He is very pale but still has spurts of energy! Nicholas was a little short of breath but still played some. A little cutie patootie Abby, who just turned three, came to see them down at Sissy Bears and the boys both picked her some flowers! Move over girls, there is a new little cutie on the block!! She woke up yesterday morning and told her Nona, "Today is the day! I'm marrying Nicholas!" Bonnie told her she thought it was Spencer!!! At that, Abby decided that she would just marry both! Nicholas said disgustingly, "She's too little to get married!" Spencer also brought Mom a bouquet! They are both so sweet! Abby gave them a big kiss bye and they both wiped it off! I couldn't help but laugh!

Remember Maria, ga/maria, yesterday was her first day of chemo. Remember Chance's mom, Patty, going to Duke for chemo for cancer too, ga/chance. Remember Ty, Jordan, Apryl, Erin, Nathan, Ty S, Devin, Little John, and all the ones that are on treatments.

Belated congratulations to the Dillow Family, va/clinton, on his new baby sister born on April 27th, Sara Grace that is free from FA, PTL.

Blessings and Bear Hugs,
Donna

Monday, June 13, 2005 7:04 AM CDT

Good Morning,

Overall, the weekend was great! Nicholas did get a little under the weather on Friday night. We went to a wiener roast and it was too humid outside. Nicholas wanted to play frisbee and bad minton but was wringing wet with sweat. We left early and he was just totally washed out. I got some Gatorade in him as I was afraid he was going to dehydrate on me. He is borderline all the time.

Saturday, we were visited by Aunt Bon Bon, Sissy Bear's sister-in-law. She was brave enough to bring 4 children in from Florida! I think she brought 6 but only 4 visited us. Her granddaughter, Abigail is just the cutest and put on a performance for us! She volunteered to be Spencer's girlfriend! It was so funny.

Sunday, Nicholas began coughing up blood again. He looked at it and said, "Mom, That's not blood, that's yogurt!" He had eaten some red and pink cherry flavored yogurt the night before. I wished it was yogurt!

I had to change his mic-key button again! I can't believe the other one didn't last as long. They are getting a hole in the ballon and it won't hold water. The balloon of water keeps it in his tummy. Now, I don't have a spare.

We are getting counts today and I'll post them as soon as I know something.

I'm waiting on my miracle. If we don't get it, then we have to make the decision of transplant. We do not feel he will survive a bmt with all the infections he is constantly fighting. He will not survive without one(bmt or miracle!) and has a small chance of surviving with one. How on earth do we accept God's will? We have to get our plan in line with God's! I wish I was young enough to have a sibling match for him. This is agonizing, heart wrenching, punch in the gut feelings that continually wash over us. Each moment full of heart whispers for miracles, constant worry laced with "With Christ, all things are possible."
Yes, all our strength lies in Christ.

I heard "Momma!" last night and found Spencer in the floor beside of our bed! I don't know what happened! I put him back in his bed and he didn't move a muscle! Other than that he slept well last night.

Maria, ga/maria, also needs a miracle. She will be admitted today to have a feeding tube placed and begin her chemo. Surgery is not an option at this time. She is in lots of pain through out her body, please remember her too.

Please help support us, we have wrist bands, bears, and car magnets available. Please order something today. Email me!

Please go give blood or platelets, wherever you live, someone could use blood products. We have to travel an hour to donate platelets! Pray for all the children and adults that are transfusion dependent.

Miracles are in the making, please Lord have one with Nicholas name on it.
Donna

Friday, June 10, 2005 7:11 AM CDT

Hello,

Nicholas actually has more of his voice back and was a little more perkier! Is that a word? Spencer makes up words all the time so I guess I can too!!! If he says something that is off the wall, he will look at me and say, "That's Spanish for....!" Yes, Sissy Bear has definitely brain washed my child!!!

Nicholas and Spencer were playing with a printer cart. A small one that has rollers. Guess what Nicholas came up with! Did you say surgical bed? He put his spider, Spooky, on it and told Spencer that he was taking it to put it to sleep. "It needs surgery, he can't speak, hear, and needs ivs!", Nicholas informed us. Spencer pretended to say good bye and I asked Nicholas if he needed his assistant to help him. He said, "No, You know like you all do, you all have to go to the waiting room and wait!" He rolled Spooky away! This broke my heart watching him play out a too familiar scene that will have to be repeated again soon. They continued to play this with lots of little animals, I mean patients, and made a "recovery room" on their bed. At 10:00 pm, Spencer had returned them all to their various "homes!" Scattered all over the house! They loved that cart! Who needs toys?

Keep praying for all the children going to transplant, in transplant, or out of transplant. Those on trial meds, pray for a response, pray for a miracle! We are all in various stages of this horrible disease. If FA patients don't have bone marrow issues, they usually have cancer issues. If they don't have either, they are walking miracles! As you know, I've requested prayer for Maria who is facing serious cancer issues. Go by her site, ga/maria and let her know you are praying.

If you can be a blood or platelet donor, please do so. Wherever you live, go give! I'm sure someone needs those products. I wanted to give yesterday but wasn't feeling well myself and it broke my heart. We are going for platelets about every 10 days and have weekly blood counts. It is so scary when their platelets are down to 7k. Keep him calm, don't let him rough house, don't let Spencer jump on top of him, don't let him hit his head....on and on. PLEASE help me pray for a miracle, a cure for FA, or complete insanity one! WHAT? I know, I'm beyond that now!!! do de do, they're coming to take me away, hee hee, haw haw, to the funny farm where life is free from FA, ALL, AML, EG, .....do de do! Only Heaven is free from all of this...

Heaven Bound,
Donna

Thursday, June 9, 2005 7:05 AM CDT

Hello,

Nicholas is doing a smidge better! They both slept well and I did too! It was so strange! Every time I woke up, I kept looking at the clock to see how much longer I could sleep! Duuuuh! I just need lots more!!! Yawn!

I had to change the dressing on Nicholas' PICC line last night and the site looks wonderful, no redness or even blood. I'm thankful. The last time I changed it I said something about hating to have to put the statlok that holds the line back in the same place on his little arm. Nicholas said, "Mom, you know you have to!" He can always make me laugh! There is lots of things that I "Have" to do but that doesn't mean that I like it!!

Sissy Bear is keeping the boys today. Mary's cousin passed away and the family really needs prayer. He was only 28 yr old and has three children and died from an overdose. The family is heartbroken.

Again, I'm struggling every second to keep Nicholas alive and the devil has so many hooked on drugs. I'm mad at the Devil! Like Spencer was singing the other evening, "I'm going to poke the Devil with his pitchfork and throw him away!" I don't know where he gets these ideas from!!! He has the biggest imagination! We will be going down the road and see a logging truck or a truck load of four wheelers and he will say, "That is my friend, he is taking care of them for me! or He works for me and I'm letting him borrow those!" Little Mr. Entrepreneur!! Tooo cute!

Remember all those in various stages of treatment. Remember those who've taken their flights home and the empty arms left behind. Remember those on clinical trials searching for a miracle drug. God Bless all of you that are healthy with the desire to help those in need.

New kids on the FA block:
/visit/hunturandmadalynanewton


Become a donor today: Blood Wal-Mart from 10-3!!, schedule appt with Julia Davis, 423-224-5888 or 5886 to give platelets only. If you give blood today, you cannot give platelets for a few weeks. Nicholas isn't the only one requiring platelet transfusions or red cells in this area. Once we were getting platelets and there was three red cell tx going on too! Give Blood and give Life!

Jesus was the first blood donor!
Donna

Wednesday, June 8, 2005 7:30 AM CDT

Hello,

Nicholas' transfusions that he has been getting, had a sticker on them that said "CMV Safe". Now, I find out that Single Donor Aphresis platelets aren't even checked for CMV!!! Radiation does not kill CMV! BUT the transfusion was leukocyte reduced and that would help!!! Now, Dr Harris isn't worried about the CMV part but since Nicholas chilled and spiked a fever, he is worried about a bacterial infection. Yes, his antibiotics were extended for another week.

Nicholas still doesn't have much of a voice and just drooped around yesterday evening. He did have a few spurts of energy. We put up a new bed for them and they were so excited! Spencer didn't sleep well at all though. It may have been the bed change. Who knows? He woke up this morning and did not want me to go to work. I told him that I'd be home before he knew it! He showed Mary his bed and told her that we tore his other bed to pieces! He then came and told me "Bye Momma!" and gave me sugars. I think he wanted to tell Mary more about the bed. He likes his "Big Boy" bed! He was dreaming a lot during the night and I played musical beds. Once, he woke up and said, "I want someone to sleep with me in my bed Momma!" Too cute!

We are trying to get a date set to go to Cincy. This is his yearly bronch and lots of other tests. If this Halotestin doesn't work, transplant is our only option medically besides transfusions. We not only have his lungs to deal with, but his entire system and all the infections he has been getting. If transplant isn't an option, transfusion dependant until they don't work anymore or God calls him home. Please pray, I'm begging God for a miracle. It's so hard to realize they are just borrowed for a while and not really ours to keep. It is beyond my comprehension that there isn't something some where that would work. Only God knows or can bless the medicines to work. Only God can extend life or call His children home. I know Heaven would be his home but I'm selfish and want those little hugs, kisses, and all the cuteness wrapped up in that pure bundle of joy we named Nicholas.

Nicholas was calling Spencer "Sweet Cakes" again yesterday and kept Mary in stitches. They are so cute together. Spencer is now taller than Nicholas by an eigth of an inch! Nicholas is hanging at 40 lbs and Spencer 37 lbs.

Please remember us in your prayers. IF you don't pray, get saved today, ask God to be your personal Savior and start praying! Maria is getting some questions answered about whether surgery is an option so be praying for her. fl/ty is now in NY, getting ready for transplant, ut/jordanbrunson is in Minn getting ready for his 6/20 date, va/apryl has had hers and needs our prayer, ks/nathan gets to go to the RMH today!!!!, all the children on meds, treatments, experimental medicines, all hoping for a cure, a miracle, please pray for all of them, including Nicholas.

Beliving in the Healer,
Donna

Tuesday, June 7, 2005 7:01 AM CDT

Hello,

I decided to create a ticker for the Halotestin, so check it out if you want to know how many days we have been on it.

Nicholas received his platelet transfusion last night. We were there for about 5 hours. Yes, some better but not quite streamlined! Nicholas bounced and danced up to the room and was just full of himself. The nurse couldn't believe how good he was feeling. He just couldn't talk or he would have been heard all over the hospital. He has laryngitis I guess. I'm not sure what is going on. He had been coughing up really thick mucus and I salined him and got a lot out but he lost his voice completely at the hospital. He didn't like it one bit!

During the night, he chilled and spiked a temp. I'm convinced it's a reaction to something in the platelets. I hope and pray they were CMV safe. I can't for the life of me remember seeing that on the bag of platelets and it's worrying me this morning. I'll have to call to find out. I was looking at the bag and didn't see it and then it hit me last night what I was looking for....TOO late now! I'm checking right now! They said that they should have been. Well! I just found out that they do not check for CMV on a single donor platelets, that the radiation should kill it anyway!!!! That is the first time I've heard this! Oh no, here we go again. I didn't see it because it wasn't on the bag! I know it has been on all the rest of them.....how can they say it is "cmv safe" if it hasn't been checked.

Another battle! Well, I've called Cincy and they are going to find out for me. If this means going to Cincy for transfusions, I guess we will be traveling every 9 to 11 days to Cincy! I could problably get the tx done faster going to Cincy! LOL! They have been wanting me to move (Jokingly) to Cincy, they just may get their wish! Hey Dr, get that apartment ready over the garage! Yeah, right! I'm so tired I cannot think right now! I was up seveal times with Nicholas.

Remember all the children going for bmt, on treatments or waiting for some type of miracle like us.

Blessings and Bear Hugs,
Donna

Monday, June 6, 2005 9:36 AM CDT

**Platelets are down to 7k.....please help me pray for my baby.

Hello,

Overall, the weekend was great! Nicholas and Spencer were in great spirits and had loads of fun! Friday evening, Spencer went with Dad and guess what Nicholas and I did? I found a mud puddle and made mud pies. Nicholas wanted to touch them so bad and just couldn’t!!! I held one out to him and he touched it with his fingers. I squashed it into his hands!! Yes, I’m a meanie! He immediately laughed, frowned, and then started wiping his hands on his shirt and pants! I could tell he was on the verge of getting upset with me and I took his shoes off and let him stomp in it! He loved that! I did get photos!! Will post some when I remember to download them!!!

Mamaw Boggs and Aunt Cathy came and made tacos for dinner and we had a great time! They also came back Saturday even for a wiener and marshmallow roast! I was suppose to make a Poppy-Seed cake but I totally forgot! That means that I owe Mamaw Boggs a cake!! Aunt Cathy brought the boys water guns, super soakers! They had a ball with them yesterday! I wasn’t feeling well and slept for about 3 hrs yesterday. I had a stomach bug but feel ok today.

We were trying to schedule a Day with Thomas, the tank engine but it’s so hard! Between transfusions and a low ANC, I cannot take a chance and get Nicholas in a crowd. He is coughing up blood this morning. We did have a blood draw this morning but I haven’t heard back from it. He has some blood around his mickey button too. I’m sure it will mean platelet tx! I’m also worried about his hemoglobin level, he looks really pale. He did have some droopiness over the weekend but also felt wonderful at times.

He has been singing to the top of his lungs! I love to listen to them two! I had to change Nicholas’ trach yesterday and he started crying. Dad came in and held his hand and Spencer had to hold the other. I heard Spencer saying something and looked down to see his little head bowed and praying for Nicholas. It touched me so deeply. The love of a brother in the purest form is amazing. The trach change went real smooth and Spencer wanted to know if his prayer helped! I told him yes and to pray for my tummy. He did and then Nicholas asked him what he said! It was so cute. I love my babies.

I’ll post the blood work when I get it. Keep those in transit to transplant, fl/ty, ut/jordanbrunson in your prayers and those in transplant that we don’t even know and those coming out of transplant. Remember Maria, ga/maria dealing with cancer in her neck again. She is going back today for more scans and results of the test the last couple of weeks. Pray for all of us where bmt is not an option and on some type of medication or treatments.

I hope and pray someone went last week and gave platelets. If you did, please drop me an email and let me know. I’ll keep your names confidential if you want. Thanks to all who’ve donated in the past.

Blessings and Bear Hugs,
Donna

Friday, June 3, 2005 7:40 AM CDT

Day 12 Halotestin/Fluoxymesterone

Hello,

My second attempt to update!

Nicholas is definitely feeling much better! He was clapping his feet together to the tune of “Pop goes the Weasel”! Especially the POP! He finally settled down around 11 pm! His antibiotics had just finished and then he went to sleep. I was back up around 12:30 am venting and suctioning him. Then we all slept through out the night except for Dad, he changed the water on the moisturizer/humidifier and added more formula to the feeding bag around 2 am! He always sets the clock and does this to let me get some sleep! If I happen to be up around this time, I try to do it and then reset the clock ! Then he will wake up around 3 or 4 and ask me if I reset the clock!!!! No rest for the weary!

This one is no where near what I did the first time!! Oh well, take whatever is put in your plate and be content! Maria called yesterday and Nicholas told her, “Maria, God will take good care of you!” Mary and Maria both boohooed! He believes in prayer and knows the healer! His faith puts most grown ups to shame including me!! He will ask Dad to pray almost every night!

To Prayer Bear Heidi, I love that graphic in the guest book!!! You just got yourself in trouble! You will have to create one for all the Prayer Bears!!! I thank you all for signing the guest book and most of all for your prayers. Debbie N, I had missed you!!!

Thanks to Kathy M. for the wonderful picture book of Horses and the coloring book too!! They loved them and “Whooopppeeeees” and “Yiiiipppppeeeeees” continued the rest of the evening! I know that took so much time and I appreciate it so much. Thanks!

Thanks to Racquel for the card campaign to the boys. They love the goat and turtle photos and the stories!!!! Spencer loved the Spiderman stickers on his and said, “Wow! Awesome!” How many more days until you arrive in VA??? 29?

Thanks Trish for the hand made Prayer Bear cards you sent them. They were adorable and I appreciate all you’ve done for us and the PBs! Glad you are feeling better!

Whew! I was behind on my thank yous! I’m sure I forgot someone but I still thank each of you for the prayers and encouragement! Last week and this one was rough but we have survived without too many scars!

God is good!
Blessings,
Donna

Thursday, June 2, 2005 7:00 AM CDT

Day 11 Halotestin/Fluoxymesterone

Hello,

My super ball has finally bounced back!!! He felt much better and wasn't near as sick at his tummy! Thank you for praying for us. God is so so good! I was up a couple of times last night but overall, I can see a huge improvement. I definitely think that Levoquinn was what was making him feel so droopy. Also, he is sounding different when he coughs! Steroids??? Probably! He was being pesty last night, laughing and making silly faces! Oh, how I love him feeling better!

Spencer was feeling better too! He and Nicholas played "Guess Who?" and had a ball! They are a hoot!

I forgot to mention that they got to see their cousins from Illinois. Jeff's brother, Darrell and his family were in and we all cooked on Sunday. Spencer and Kayla played and played! DJ taught Nicholas how to play the Game Boy and that started the "I want one of these and all these games too!" Jennifer and Heather have grown into fine, beautiful young ladies! They are now sporting the FA wrist bands too! Please remember Darrell, he is now on 6 liters of Oxygen and his lungs are functioning at 50 percent of the normal capacity. They are saying he has black lung but their other brother Ronald is on oxygen too and they both started out with nodules in their lungs. They think Ronald had rhumatoid arthritis and it has attacked he lining of his lungs but that isn't definite yet. Anyway, it was good to see everyone! Heidi, keep up the good work! Nicholas and Spencer really enjoyed tickling Kayla! She is so cute!

If and that is a big IF Nicholas has a series of negative blood cultures, then the PICC line will stay! Please help me pray for the bugs to fly away into "Never return Land!"

Please remember Jo, her blood pressure has dropped to 72/54. ks/joandjacybox
ga/maria, she goes back for more tests next week and the tumor has grown into her esophagus, making only soft foods swallowable!
Remember all going to tranpslant, in transplant or on treatments of some kind.

Bloom where you are planted,
Donna

Wednesday, June 1, 2005 7:31 AM CDT

Hello,

Day 10 Halotestin/Fluoxymesterone

I think I'm seeing some moodiness from the steriod! Yesterday, he wanted his mask to carry outside and cried and cried. I told Mary to give him a clean one to play with. I ended up going home because his little heart was breaking and Mary had to run an errand. I wasn't in the best of moods and really had a rough time mentally. I feel like we are causing the bacteria to get into his blood stream. I guess I'm pretty good at beating myself up mentally! I was exhausted by bedtime! If we are doing something wrong, I want to know. I guess I need to be a better advocate for him in the hospital world too. He cannot keep going through all of this. Jeff said, "We are trying to put bandaids on something much bigger!" I guess he is right.

Nicholas continues to have a diarrhea and so nauseated. He was worse yesterday than on Monday. He stopped the Levoquinn yesterday and I think that was part of the problem. He has no energy and yesterday kept saying that he was sooo tired. He is now on different antibiotics!!! They have put him back on Gentamycin and Synercid, yes, two major guns. I'm praying they will work and the PICC line won't have to be taken out. Please help me pray for this, as well as a complete cure!

Spencer, bless his heart, needed a nap yesterday evening and I could not please him at all! Then, all he wanted was "Momma" to hold him. It is so rough on him and me! Especially, when Nicholas had to be vented every 5 minutes! It has been like this all weekend!

I just about lost it last night! I could have cried a gallon! Kim came over but I knew I couldn't cry on her shoulder, she was just about in tears to begin with!!!! Nicholas started feeling some better late yesterday evening! Mary's mom, Clara told him that she would pray for him again (they prayed together earlier in the day), that Jesus was going to make everything better. He said, "No, don't pray, I already feel better!" Then, he got up and acted totally different! I actually left him off his feeding for a couple of hours and let his tummy calm down. He told Jeff that the water I gave him through his tube helped him get better!

Now, on to Maria! The dr feel this is a seconday cancer that there is more somewhere else. Please pray for her and sign her guestbook caringbridge.org/ga/maria

Remember: /ut/jordanbrunson FA bmt 6/14,
fl/ty FA, admit 6/16, BMT 8/10 donor around 6/23/05
http://devin.whittinghamplace.com, FA bmt today! 6/1,
va/apryl, is out of hospital and at the RMDH! Good News!
oh/erinmckee, FA BMT 5/05 remember her.
Remember these children as well as their families.

Trusting in the Healer of broken hearts,
Donna

Tuesday, May 31, 2005 9:38 AM CDT

Day 9 Halotestin/Fluoxymesterone

Hello,

We've had a wonderful weekend! Mostly venting Nicholas' tummy trying to get the gas off so he can enjoy a quality life. It just isn't happening. He continues to grow bugs in his blood stream and on antibiotics, which are going to be changed today. This will mean that the PICC line will have to come out! And that will mean, sticks, pokes, needles, iv's, injections, a very stressed Nicholas and a broken hearted Mom! It seems any device we have installed just doesn't work for him for long and then he starts growing something in it. It makes me furious! It is just one big vicious circle and we keep chasing our tails!

On the bright side, Nicholas doesn't let anything stop him from enjoying life, sand piles, tractors, dogs, outside, or the usual love for reading or bear tales! He did have an accident on the tricycle and skinned his little wrist. I died a thousand deaths when it happened and I just couldn't get to him in time. He was doing so well but was on a slope and turned too fast and over he went. It broke my heart. My fault, I shouldn't have left his side.

Spencer, on the other hand has enjoyed the energy of Nicholas and they have played and played. He will pet on Nicholas when he isn't feeling well. It is so precious!

I think this morning was rough without Momma! But it doesn't take them long to recover! They were playing and talking every breath when I spoke to Mary this morning.

We are getting blood work this morning and I should know something soon. I'm not expecting low counts but remain cautious at all times. I'm devastated about the PICC line coming out so please remember all of us in your prayers.

Remember Maria in your prayers. Cancer is back! It's between her esophagus and spine. They are discussing treatments, so please remember her in your prayer and post her on every prayer group or list you can.

God Bless you and remember to go give blood or platelets in your area.
Our contact is 423-224-5888 or 5886, please schedule a day and give platelets. We need them ever 10 days or so.
Donna

Friday, May 27, 2005 7:37 AM CDT

Halotestin/Fluoxymesterone Day 5

Hello,

Nicholas' platelets went down to 8k and had to be transfused. We got home at 2 am again! Yes, I'm exhausted! Nicholas will not got to sleep when we are there and went to sleep on the way home! He will probably sleep all day! He gets so tired and the Benedryl makes him real grumpy. He started crying because we WEREN"T staying all night!!! I told him at the rate that things were going, we would be staying all night.

Spencer went with Dad and they had a good time together. He wanted to know where Momma was and Jeff explained what was happening. Jeff couldn't remember exactly what he said but indicated that it was something funny about the platelets in his blood! He can come up with the funniest things.

They played "Vet" with these leather horses that I had found and had a ball. I love to watch and listen to them. I had to be the assistant and help hold the horse for its shot! We also did some school work yesterday! Nicholas did really well! I am so proud of him. He knows a lot more than any teacher has ever brought out! Spencer had to do his school work too! He is sharp as a tack!

Another thing about the platelet transfusion, they couldn't find any aphersis single donor platelets available. They found some that hadn't been used and had to be released to us. Thank you, to whomever donated on 5/23/05! Our heartfelt thanks for your generosity. Please call 423-224-5888 or 5886 to schedule an appointment to donate. Nicholas will probably be transfused again around 6/9/05. The platelets are only good for 5 days after they are collected.

Please pray for all transfusion dependent children or adults! Transfusion DEPENDENT means they cannot live without these transfusions. Please check to see if you can donate where ever you live, someone there needs your donation. If you don't have a cause at heart, tell them it's in honor of Nicholas, a little angel that needs blood products in VA!

Thank you God for allowing me to get some sleep the other night, only You knew when I was going to really need it! I'm still waiting on my miracle...patiently? Well, not really, according to the smirk on someone's face last night at the hospital when I went to see if any action was taking place! Lord, please grant me patience too.
Donna

Wednesday, May 25, 2005 6:44 AM CDT

Hello,

Halotestin-Fluoxymesterone Day 3

If you are or have been on this medicine, please email me and let me know the pros and cons. I know someone has been on it for anemia and their platelet count went back over 100k!!! If by some miracle you are reading this, please let me know.

Good news first, Nicholas and Spencer are ok and feeling spunky! They are laughing and playing! The other evening, Nicholas was singing to the top of his lungs! He would swing and sing! I loved it! I couldn't understand a word of what he was saying but it was definitely music to my ears! It was to the tune of "London Bridge" and then later, he was singing "Where, Oh Where have the crocodiles gone?" Spencer just wanted to snuggle in Mom's lap for a while. I think he missed me! Mondays are always the hardest!

The other night when Spencer couldn't sleep and crawled into our bed, he kept saying, "Mom, I can't sleep for you snoring!" It was funny! I probably woke him up and he thought it was a bear! Ha!

The bad news: Nicholas' blood culture is still positive! That makes me so mad! We aren't on the correct antibioitics yet! Now, just as he was finishing this round, he will have to have more or different ones! Also, he is bruising again and will probably have to be transfused tomorrow after his cbc results come back. I hope and pray the platelets will be available.

Pray for all the children struggling, trying to live. Pray for the parents or caregivers. We struggle with all the strength we have to keep our children alive and then someone will try to commit suicide and it makes me so sad. Or you hear of someone abusing or killing their children, Where, Oh Where has the love gone?

Still praying for a miracle,
Donna

Tuesday, May 24, 2005 7:32 AM CDT

Hello,

Halotestin Day 2

Yes, Yesterday was Day 1 of Halotestin. I hope and pray it works. My heart isn't into this medicine and it just about killed me to start it. I wanted a miracle but haven't received it yet. I will continue asking. Seemingly, I'm in constant prayer for my children. I know I'm being prepared again for something and pray for strength to go through it. I know God is faithful but I just need some extra strength so please help me pray.

Blood work! Platelets were 100k on 5/16, yesterday they were down to 19k. That is how fast they go. Rest of his blood work was ok. ANC was 564, Hemoglobin was 11.7. That is because of the red cell transfusion on 5/13/05. Hopefully, he will hang on to those red cell longer than usual. I pray the new medicine boost the little marrow that is left and the cells flourish!

I do have more magnets in now!!! Order yours today for your fundraisers! FA or other bm disorder families get them at cost! Please help us find a cure.

Pray for Erin, oh/erinmckee, bmt 5/11 for FA, Devin, bmt for FA on 6/1, /ut/jordanbrunson bmt on 6/14, fl/ty has the go ahead for bmt and starts testing on 6/16, Apryl va/apryl, bmt 5/6. All these children are in need of prayer and their families. They are or will need blood products at some point. Single donor platelets are the best for these children, please go give platelets where ever you live. Give blood today, give life. Help these children over the hurdles.
Also, pray for Prayer Bear Michelle, she is having heart problems, Prayer Bear Maria is undergoing testing at NIH this week, pray for her. Thankfully, Prayer Bears Trish and Sharon are back up and praying after hospital stays recently too! Let's all pray to beat the Devil!

Bear Hugs and Blessings,
Donna

Monday, May 23, 2005 9:27 AM CDT

Hello,

Today is Halotestin Day 1

Friday, I had a IEP, Individualized Education Plan, for Nicholas and signed up Spencer for Pre-K. Spencer had to be tested for Pre-K and I had to take him back that afternoon. I think he tested himself OUT of Pre-K!!! He acted so sweet. It hasn’t hit me totally yet but I stay on the verge of tears! Nicholas did have a short visit with his class! This is the first time this year! I wished he was able to visit more but his counts are just too low. Monday’s are the worst but he has Field Day on Thursday so maybe, just maybe I’ll take him for awhile.

He was droopy most of Saturday but felt better yesterday. We spent the most part of the weekend at Mamaw and Papaw’s! Uncle Kenny’s birthday party was yesterday too! God’s blessings, good food and family, what more can we ask for! My baby’s miracle is very much still needed! We are thankful that all is as well as it is. Things could be a whole lot worse. We are getting blood counts today and will start the Halotestin this evening. I’m NOT looking forward to this medicine. I’m scared that the side effects will be horrible but hoping and praying they are not. Praying for the bone marrow to respond to the medicine. There is another girl on it and her platelet counts went back over 100k, I just don’t know who she is!! I pray Nicholas responds that well.

Guess what I’m listening to right now! Nicholas’ giggle box has turned over and the giggles are pouring out! He is laughing at Spencer about something and can’t stop! Spencer is hollering , “Momma, I love you!” He says it the sweetest. Momma misses her babies this morning too! I love to hear them laughing and talking, sweet, sweet music! They can sure put a smile on my face!

Specific prayers: Pray for the medicine to boost Nicholas’ marrow. Pray for /va/Apryl, she has mouth sores right now but PTL her counts are getting higher! /ut/Jordan is getting ready for bmt, fl/devin is closer to bmt, scheduled 6/5/05, I think. Fl/ty is waiting on donor for bmt. All these have FA. Also an unspoken request, God knows what we need.

Have a blessed day! Cherish the giggles,
Donna

New Platelet Donor News!!!
With permission!

"Donna:

I just wanted to thank you for inspiring me to become a platelet donor. I gave for the first time today, thanks to your encouragement. YOU have made a difference.

My nephew has FA, and I have followed Nicholas' site, along with other FA children, for the past two years. Unfortunately, my nephew does not have related donor match. However, the great news is that he is not in imminent need of a transplant.

Being able to donate platelets helped me feel like I was able to do something, if not for my Noah, but possibly some other child. It was a blessing and a gift to be able to do so, and I wanted to thank you.

May God bless you and your family,
Lezlie Chesler
Salt Lake City, Utah"

Thursday, May 19, 2005 7:09 AM CDT

Hello,

The boys were raring to go outside and play, play, play! They played in the sand pile and rode the gator. Carolyn brought them some wands that can create 4 foot long bubbles and they look like swords. They had an absolute ball playing with those! They loved them. Thanks Carolyn!

Nicholas is just about up to his normal feeding level and hopefully, we can even go up on the amount he gets. I'm thinking of blending the chicken and dumplings and pouring into his tummy! I think that may help getting some calories into him!!!

He was a little restless last night but didn't wake up at all. He didn't require any oxygen at all yesterday nor last night. He has stopped coughing up blood and the secretions are diminishing. He is getting better!!! PTL!

Please remember Jeff's mom, Viola. She is having a catherization of her heart this morning in JC. Jeff is suppose to call and let me know how everything went. It was suppose to be at 7 am but it will probably be around 9. I'm getting good at predicting how long things take! Just say forever and your are close!!! HA!

The bears are selling and I'm currently out of the Auto Magnets right now but more are on the way! Also, the wrist bands should be here this weekend sometime. I can't keep those! Email me and I'll send you whatever you want, except the boys!!!

Give Blood, Give Life,
Donna

Wednesday, May 18, 2005 11:18 AM CDT

Hello,

Thanks Sissy Bear for updating for me! Your the greatest! The chicken and dumplings also helped!!! Nicholas actually ate some! I must have left him off his feeds too long, he actually ate cheerios, M & Ms, and fruit loops while in the hospital!! He hasn't eaten much since until your dumplings last night. He also tried to eat butter! I looked at him last night and he has shrunk. He looks so small to me and I know he lost another pound and it makes me so angry when I can't get any calories in him. I cannot get the 7 lbs that he has lost back on. I wish I could. I will one of these days!

He is feeling much better and didn't require Oxygen last night. Thank God for answered prayers. He has been playing, laughing, and talking to the top of his lungs. He has spurts of energy and then has to lie down and rest. He says that he is "so tired." I WANT a cure for this horrible disease. I want my baby to LIVE! He is now going for platelet transfusions every 10 days and red cells monthly. It takes 5 days to process the donation of platelets. I pray for God to lay it on everyone's heart to go donate platelets and blood products and get on the bone marrow registry. Please. Please get a desire in your heart to help and get jump started! What on earth can I do to inspire you to donate? If those photos of Nicholas do not inspire you, what will? Yes, I'm begging, pleading, and crying for you to help. If you cannot give blood, then please say a prayer for us.

Have you ever needed something so badly then be told it isn't available? The fear that strikes the heart isn't comparable to anything else. The mountain that falls on your shoulders is horrendous. Whether it be platelets, red cells, bone marrow transplant, or medicine, it brings us to our knees. NO CURE. Shatters the heart and leaves us no strength to even try to pick up the pieces. Without God, we couldn't make it through a second of this journey.

God heals broken hearts too,
Donna

Tuesday, May 17, 2005 12:10 AM CDT

Oops! I didn't know that Donna had updated! Go to the journal history to read her update!

Donna is at work today, but she is very busy.
Nicholas is doing very well today, so far. He has
tried to bargain with Mary today. He told her that
if she would get him loose from the feeder, he would
help her do the work!!!!
He does have pain in his left side occasionally; this lasts
for 30 min. This is very scarey while it is happening. Rem them in your prayers.
Maybe Donna will be back in touch tom.
Thanks for all prayers.
Sissy Bear

Tuesday, May 17, 2005 11:46 AM CDT

Hello,

We are home and slowly re-bounding. Nicholas is coughing up blood clots and needs prayer. He had one bad spell with pain in his lower left lung yesterday and requires oxygen periodically through out the day. His teacher was there for school and realized just how bad he was. He started to feel better and she mentioned that she had brought a book. Nicholas immediately perked up and said, "The pain heard the word b-o-o-k and had to go! Take that Mr. Pain!" It was amazing! Totally came alive again and acted like a different child. His teacher said, "No one would believe you if you told them, they would have to be here and see it with their own eyes!" It was miracleous!

Just a plug about platelets! They didn't have what he needed in Kingsport, where all our blood products come from. They finally found some single donor platelets in Johnson City!
Please, please, if you are able go give platelets! Make an appt today, 423-224-5886 or 423-224-5888.
Thanks. Give where ever you live, some one will need it!

19th: Mobile Blood unit is going to be at Mary's Chapel in Coeburn from 2 to 6 on the 19th. Give life.
24th: they are going to be at the Dickenson County Hospital
26th: NOrton Community Hospital
Thanks.

Remember Devin, Apryl, Ty, and all the rest of the children going to transplant or in bone marrow failure.

We are blessed,
Donna

Monday, May 16, 2005 10:40 AM CDT

Nicholas came home yesterday eve. He was very happy
to be home again! He is not out of the woods yet, so please keep praying for him.
Sissy Bear

Saturday, May 14, 2005 9:24 AM CDT

Good Morning!
Nicholas does have pneumonia! They did another x-ray yesterday eve and it showed up. Good news--his temp is down this morn.
Donna was telling me about his prayers last night. He wanted to pray for Sissy Bear and her classmates(my students who are sick), Clyde(Papaw's friend who may have lung cancer). He asked Donna who else is sick and she told him, "you". He chuckled and said that he couldn't pray for himself. Of course, she asked why not. This is his reply, "because everybody else is praying for me!" Ok, Guys, he is depending on us to pray! Oh, the trust of a child!!!!! The faith of a child!!!! One of God's little ones!!
Until next time, take care; may God bless and keep you.
Sissy Bear

Friday, May 13, 2005 3:51 PM CDT

I called about Nicholas this eve; he is complaining with his side hurting. He did this before and it was pneumonia.
It does not show up on x-rays. He still has a temp of 102.9. Do you think chicken and dumplings would help?!!! I wish. I do have chicken thawing...just waiting for those words, "I'm coming home!"
Thanks for all the prayers and words of encouragement.
Love,
Sissy Bear

Thursday, May 12, 2005 8:14 PM CDT

Sorry, Guys! I was rushing this morn and made error in the
phone #. It is 276-679-6329.
Nicholas has had high temp all day. They finally began antibiotics about 1:30 today!! Grand positive cocci has shown up in culture. Donna kept telling Dr. that he was fighting something, that it wasn't viral! I don't know what part of "not" that he didn't understand; she knows her child. I keep telling her she missed her calling. She should have been a nurse; she is a nurse now, but as a profession, she would be great! Maybe even a doctor!!!
I had plans to go visit this eve., but the Fifth Disease is going around at school and I have been exposed; it causes serious problems for people with low immune systems or with cancer; Nicholas doesn't need anything else. I hope I don't get it either; it is so hard to stay away! I talked to him on the phone, but it is not the same.
Please remember them in your prayers.
Thanks for all support and uplifting messages.
Love,
Sissy Bear.

Thursday, May 12, 2005 6:21 AM CDT

Well....Nicholas is in St. Mary's Hosp. 278-679-6329
He had a temp of 103.9, but it is down to 101.9 now; he is very congested, the usual, maybe ear infection. Donna took him in at 3:00 am.; they are getting a room ready-Room 329.
Rem them in your prayers.
Sissy Bear

Wednesday, May 11, 2005 9:35 AM CDT

Hello,

Where do I begin? The week-end was good and the boys had a great time playing for the most part. Dad and Spencer made me a Mother’s Day Card on Sunday morning. It was precious! Nicholas gives me flowers every time we are outside so I have Mother’s Day every day!!! I also got a dozen red roses!!
Thanks for all the Happy Mother’s Day wishes, they brought a smile to my face this morning!

We did manage to get to church on Sunday with Jeff’s Mom and had dinner on the ground there. We left for Cincinnati afterwards. Nicholas took up with Glenda Johnson while we were there and she fell in love! She told me that “He says the sweetest things! Lord, I haven’t had a man to tell those things in forty years!” It was so funny! Yes, she is now smitten! They exchanged addresses and she is going to send him a card. She is actually a distant cousin on Dad’s side of the family. She sang “Two Coats” during church and had on a red dress! Nicholas told her he liked her singing and how she looked! He is the King of Flattery!!! He knows how to get to these older women that is for sure!!! He also had three other little girls following him around. Spencer took up with a little girl named Christin and she would carry him around! He was almost as big as she was! He kissed her on the cheek and told her he loved her! I’m beginning to wonder just what I’m teaching my boys!! They are sweet and so precious! Everyone falls in love with them!

Both Nicholas and Spencer slept most of the way to Cincinnati. Spencer only woke up for ice cream and dinner. I figured we would be up all night but he was asleep by 11:30 pm. Nicholas doesn’t ask , “Are we there yet?” He asks, “How many more miles is it Dad?” Then when we were just outside of Cin., he asked, “Do you see it yet Mom?” I asked, “What?” He said, “Cincinnati!” We were about 5 miles outside of Cin and there was a Good Year blimp in the air. Spencer spotted it and asked what it was! I told them and Spencer would not call it a blimp! He and Nicholas started pretending it was their friend and called it “Thing!” Spencer said, “Thanks Thing for showing us the way!” He can come up with the funniest things! When we arrived in Cincinnati and Nicholas saw the tall buildings, he knew where he was! He kept screaming “Cincinnati!”

We made it to the Cin Zoo! They really enjoyed it. Spencer was in his glory riding the little train! We rented a little buggy and Nicholas usually doesn’t sit in them but this time he hardly got out of it. Just to stand up and see the animals and then he would sit back down in it again. He kept saying how tired he was. After the zoo, we went to the hospital for a platelet transfusion! Guess how long it took!!!? Can you say a total of 2 hours! That included registering, getting set up in the room, a photo shoot while it was happening, getting the transfusion, and checked out! Can you tell the comparison going on here?? 2 hrs vs 6 or more????? Something is definitely wrong!

Ah, the photo shoot? Yes, he is going to be the poster child for the blood drives! They have them quarterly, I think, and will use his photo for a year. Yes, I do get copies! They took a family photo too! After the zoo trip, you can imagine what we looked like! I glad it will not be used! Nicholas was really apprehensive when we first arrived but the photographer asked him to help with the lights and he was all smiles. Looking at Nikki also helped him smile really big! He became the ham he normally is!

Emily, the nurse, really included Spencer in her play too. She was so nice and made him feel special too. Everyone was thrilled to meet Spencer too! He was accommodating and scared everyone with his cobra mask! He loved it!

Another thing, Spencer got so homesick he cried and cried. He was tired and wanted go home! He finally went to sleep for an hour or so. Then, when I put on my gown, he started again! He wanted to go home! After a little while, he realized we were staying and was ok. I think it was a combination of the zoo, hospital, and home sick! He gets car sick and actually threw up or was nauseated most of the trip. He was glad to be home. Actually, I think Nicholas was more pleased than Spencer! Nicholas jumped on the tractor as soon as we arrived home. Anyway, we are home safe and sound. Spencer thanked God we were home! Too cute!

The bears are in and available to bless your home! I have the white ones now and they are simply adorable. Little white fuzzy bears, with a yellow sweater on! Order yours today! I am currently out of auto magnets ribbons and the wrist bands but more are ordered! If you have placed an order, I’ll mail them as soon as they arrive. Thanks for understanding.

Remember Apryl, Jordan, Ty, as they are in transplant or headed in that direction soon. Remember the Hargraves from CA, they lost their son, Logan. Keep praying for cures, miracles, and patience.

God’s Blessings,
Donna

Monday, May 9, 2005 4:15 PM CDT

Nicholas and Spencer went to the Cin. zoo today and enjoyed it very much.
Nicholas' platelets were 11,000; he had a transfusion after the photo shoot.
They are very tired this eve.and are returning tom. Donna sounds exhausted; please pray for them and also for a safe trip home.
Sissy Bear

Friday, May 6, 2005 6:58 AM CDT

Dear Lord, it's such a hectic day,

With little time to stop and pray,

For life's been anything but calm

Since you called me to be a mom —

Running errands, matching socks,

Building dreams with wooden blocks,

Cooking, cleaning, finding shoes

And other stuff that children lose,

Fitting lids on bottled bugs,

Wiping tears and giving hugs,

A stack of last week's mail to read —

So where's the quiet time I need?

Yet, when I steal a moment, Lord,

Just at the sink or ironing board,

To ask the blessings of Your grace,

I see then, in my small one's face,

That you have blessed me all the while —

And I stoop to kiss that precious smile.

— Anne Foster

Happy Mother's Day!

Hello,

Nicholas wanted me to hold him all evening! That usually indicates that he is getting sick. I'm having second thoughts about the Halotestin, I guess we will have to start it sooner than later. I have just been waiting on my miracle. I wish God and I were on the same time table!!! I think I need a miracle now but He doesn't think so! Not yet anyhow! It just hurts to see him going downhill. It kills me to think that his marrow will not replenish itself. Please help me pray for a miracle! A cure for FA would be wonderful too.

Spencer had a ball helping Dad clean off the garden! Getting ready to plant some veggies! Fresh corn, yuuummmmy!
I can't wait! I love corn! Spencer does too! He told Dad that he had work to do!!! He is so sweet! He came in and got all stuffy nosed again! They had mowed the lawn too. I hope he doesn't have allergies too!

Pray for all the children taking treatments! va/apryl her transplant is suppose to take place today. jordan from ut is going this month, devin from FL is leaving the 16th to begin his testing. ty/fl his donor backed out at the last minute and now are waithing for the back up donor to give the go ahead! Pray for all the FA families, they are very dear to our hearts and we are all connected by a common thread called Fanconi Anemia, a horrible embedded disease that also eats away at the soul!

I'm waiting for more miracles to rain down,
Donna

Thursday, May 5, 2005 6:49 AM CDT

Hello,

Nicholas is screaming to the top of his lungs! Exercising his vocal cords! He even demonstrated for his teacher! He is still laughing, playing, and being a pure ham!

On the other side of the coin, he isn't looking the best (coloring) and he is getting bruised real easy. The next counts will probably be on Monday. No home health today because I have already changed his PICC line dressing! Yes, I did it all by myself! I had to. His secure lock was even loose! That is a little device that holds the PICC line in place! I was just about finished and he decides to scratch it! Before I could say, "NO!", he reached over and scratched it around where the line goes into his little arm! I had to clean it all over again! It was clean that time!!! Being the little imp that he is, he thought it was funny! Spencer was crying wanting me to pick up his mask out of the floor! I was sterile and had to pick it up with my toes!!! He just had to have MOMMY to pick it up because I was paying too much attention to Nicholas!!! This was Tuesday night!

Did I mention what I had to do Friday? Change his mic-key button out!! It was too loose and I added more water to the balloon but it wasn't helping. I knew the balloon was leaking. He started crying when he realized what I was doing and said, "But I don't trust you!" WHAT? Broke my heart! Where on earth did that come from? Anyway, I had it changed before he knew it and was still whimpering and I said, "It is in! I'm finished!" He immediately stopped crying and smiled real big! "You were right Mom! You did a good job!" Stinker! I asked him, "Now do you trust Mommy?" He smiled really big and said, "Yes! Thanks Mom!" Double Stinker! Yes, it was a total melt down then!!!
Spencer was a real big help! He would look at Nicholas with a stern look and say, "Stop crying Nicholas!" After it was overwith, it was funny! Those two keep me laughing!

What next? Oh, yes, the trach. It has to be changed this weekend! He knows its about time and already has mentioned it! It's really easy to change if he doesn't tense up! He thinks he cannot breathe but he really could out of his nose. He doesn't have to breathe that way so he panics when the trach is out for a few seconds. I don't blame him, I would be panicky too.

Last night, I was holding them both and reading, "I'll love you forever!" It is these times that are so precious. Nicholas started it by holding and rocking a little rabbit and he sang that little song to it! Then Nicholas and Spencer wanted me to hold them and I started singing it to them. Spencer decided it was time to get the book and let Mommy rock, read, and sing to them! When the Mom got too old to sing, I changed my voice to a little old lady and Nicholas looked at me so pitiful. I think he was about to cry! Then, when the man sang the song, my voice changed then too, to the delight of two little boys! That is when we all burst out laughing! It was hilarious! If you don't have that little story, go get it! The meaning is wonderful!

Today is the National Day of Prayer! I thought that was every day! It is in a CB family, just ask us! Now, go pray!

Remember Apryl, Devin, Jordan, Nathan, and all the CB families. We are all going through major problems or we wouldn't have a CB site!

Pray without ceasing, Miracles are still happening!
Donna

Wednesday, May 4, 2005 6:54 AM CDT

Hello,

Nicholas and Spencer were in fine form yesterday evening. Laughing and playing until the sweat popped out! Spencer's hair has been soaking wet where he plays so hard! It is no wonder his cold is still here with us! His nose has stopped running but still has some congestion. He is a little stinker! Ice cream with Dad is becoming a big habit every evening! Of course, I have to have a bite too! Spencer eats all the chocolate! Nicholas is actually consuming some things, M & M's!, ice cream, yogurt, and still chewing on the cheese topping of pizza and chicken. He is aspirating though. His thermovent will be blue, red, brown from the M & M's! He actually coughed out some pizza too! I probably shouldn't let him try to eat but how on earth could I not? I love to see him try to eat. That is the one thing that amazed me on our first trip to Camp Sunshine! The FA children were eating! I stood and just watched! It amazed me!

Remember /va/Apryl, she is having an allergic reaction to the chemo. Remember fl/ty, his donor backed out and they are trying for another. Remember all the ones headed for transplant or on treatments. Remember us.

God gives 2nd chances,
Donna

Tuesday, May 3, 2005 6:56 AM CDT

Hello,

It is with saddened hearts that we are journaling this morning. Another little lamb has been carried by the Angels to Heaven, her name is Emily. She is now sliding up and down those rainbows that she loved to chase her on earth! Can you imagine? Having a rainbow to slide on anytime she wants to? I don't know that that happens but it sure sounds like fun. I'm sure there are more beautiful things in Heaven that we can't even comprehend or even imagine! I can only think of the earthly pains and suffering completely gone, that in itself is Heaven. No more cbc's, no more picc lines, ports, central lines, platelet or red cell transfusions, no more pain, no more hospital stays, and no more infections! Fly Free, Emily. You don't have to chase rainbows anymore, you found the pot of gold! Opps! That would be pavement in Heaven, so I don't think the pot of gold is worth much there! Now, she can hop, skip, and jump from one rainbow to another! Rainbow Hopper!

Also, Spencer and Nicholas' personal Santa needs prayer. Mrs. Claus (Connie Fleming) has breast cancer and is going to dr for treatments options now. Please remember them in your prayers.

The boys are fine and have had a ball with the balls that Brittany gave them. They have had all of us playing with them and Nicholas has laughed his head off! Last night, one of my cups was broken! Not the boys! DAD! I said, "OK BOYS! It's bed time!" I don't think Dad thought that was funny! Spencer fell again playing yesterday and hurt the same arm and after I held him and loved on it, he forgot about it hurting! He is still warm at times and has a runny nose. Bless his little heart!

Nicholas' last cbc was yesterday! Platelets-41k, wbc-4.8, hgb-11.5, and an anc of 816! He is holding on to his red cell but the platelets are falling. Hopefully, we can start the medicine this week and get his marrow kicked back to life. NEW LIFE! That is what we need for him, his marrow brought back to life and working!

Blood Mobile Unit is at Paramont, 12:30 to 5 pm Today!! Give! Yes, they want to draw blood, because we may need it!

Pray for all the others that are in pain or taking treatments of some type.

Now, we are chasing rainbows,
Donna

Monday, May 2, 2005 7:54 AM CDT

Hello,

Spencer has had a cold all weekend. He has a red mustache! His little nose has poured! He was a little better yesterday evening though. Nicholas was a little droopy but is ok for the most part. He kept saying he was tired. His coloring is getting "off" again.

We have no choice except to go on Halotestin for now and see if it works. Pray the side effects aren't too bad but that it will work on his marrow! Watching him decline to the point of tranfusions isn't fun and then when he feels perky only emphasizes just how bad he was feeling. Talking about a roller coaster.

I keep hearing, "I know we aren't suppose to question God but I don't understand why you all have to go through this!"
I don't either but I know it's a God thing. God has plans for Nicholas that I can't even touch or tap into, let along understand. It is not for us to understand but to do the best we can to raise him in the admonishtion of God. Who am I to question? I accepted Nicholas even before he was born. I look at him and see the wonderful, beautiful gift God has loaned us for a while. I look at him and I forget the horrible hospital visit we just went through. I see his smile, flirty eyes, and mischeviousness and all I see is one big love bug! He tends to make me forget all the bad and fills my heart to overflowing. Thank you God for these wonderful gifts called children. Every baby is a God-send but we are too caught up in our selves that we aren't enjoying them to the fullest.

Spencer is a sweet heart too and I love him dearly. He had some splinters in his fingers and said, "God will make them better!" They disappeared and I told him he was right! He and Nicholas have had a wonderful time playing this weekend and love their balls that Brittney gave them. He will do something and then wink at me and click his tongue! He is a card! I didn't know I could possibly love so much. Every day, I think my heart gets bigger! I love them more and more each day.

Remember all the ones suffering, Emily, Nathan, and all those getting treatments. Pray for cures.

God doesn't make mistakes,
Donna

Thursday, April 28, 2005 6:35 AM CDT

Good Morning,

Nicholas and Spencer were very rosy cheeked yesterday evening and later Spencer said his throat was sore. Oh, no! I hope they aren't getting sick. Nicholas is having some loose stools again and I'm afraid C-Diff is rearing it's ugly head again. The vicious cycle again and again! Hopefully, we can get some tests started and get ahead of the situation and get it under control. I'm amazed how he just goes on and doesn't let any of this affect his sweet, sweet spirit! He is unstoppable!

I must have had too much sleep or caffine one. I couldn't go to sleep and when I did, I had nightmares. I dreamed Nicholas' blood pressure kept going lower and lower. It was horrible. There was another baby in my dream that didn't make it. I was crying my heart out and was so thankful when Nicholas woke me up. Nicholas coughed quite a bit throughout the night and I was up a lot suctioning his trach out. The medicine I gave Spencer must have helped him sleep, he didn't wake up all night long but was up by 6:30 am. Yes, I was the dedicated mother and sneaked out of the house before he saw me! I can't stand him crying after me. It kills me. I know I'm a big chicken!

I'm in major survival mode. Actually, we all are. It's hard on all of us but we will make it! We are still praying for our miracle or miracles! I'll take as many that can come our way. I know God is there for us all the time and His grace is sufficient to see us through this horrible disease.

Remember all the children that are going through major decisions on treatment, diagnoses, and the families helping make those decisions.

Heaven is our goal,
Donna

Wednesday, April 27, 2005 8:33 AM CDT

Good Morning,

Guess what? I slept last night. Everyone slept! Even Spencer didn't wake up all night!!! Wheew! We needed it! I didn't wake up for the alarm clock, or Jeff getting up to add milk to the feeding bag, or change water on the moisturizer/air compressor. I slept through it all! I woke up once to turn over and that is it. Now, I have a crick in my neck for the effort!!

Nicholas is still rotten to the core. He is still congested a little and his trach was positive for pseudomonas, but we knew it was there anyway. He did have a big gas spell with his tummy this morning and that ususally indicates he is getting sick. I hope and pray not. His last dose of antibiotics was on Sunday. One thing I've noticed is that he cannot hear as well. He keeps saying, "I can't hear what you are saying!"

He keeps asking me to tell him about the baby snakes that couldn't say their sssses!!! I told him that in a bear tale one day and now he keeps asking for it! They can't say their sses, ls or rs! Last night he decided he would help me with the story and said, "Twell a twory!" I couldn't help but laugh! Then I let the baby snakes say it. He laughed so hard you could hear him wheezing! I love to see him laugh that hard! It is hilarious and makes my heart sing. He hasn't felt this good in such a long time. I keep forgetting how good he can be! It is sort of sad when he is this good, it makes me realize just how bad he really was feeling. Just like getting a red cell tx! It livens him up so much!

Spencer laughs at these baby snake stories too. I love to hear him giggle and laugh. He laughs so easy and quick. I love it! Last night, he asked, "Mommy, will you read this book? Will you be delighted to?" He is too cute! There were questions he was answering the other day and one of them was, "What does your Mom say to you the first thing each morning?" I asked Spencer and he said with a little smile, "Good Morning, Sunshine!" He is Mommy's sunshine that is for sure!" You know, each little word makes such an impact on your children. I didn't realize that calling him my sunshine was so important until I saw him smile when he told me and it made me just about cry! Words are so powerful! "Be careful little tongue what you say....x2, For the Father up above is looking down with eyes of Love so be careful little tongue what you say!"

Have you gotten your car magnet yet? NO? Email me and I'll send them to you!!

Remember, /ca/emily, she has had a stroke and needs prayer. /ks/nathan/ is getting mouth sores, remember him. Remember all the others heading for transplant, Apryl, Jordan, and all the others taking treatments.

Blessings and Bear Hugs,
Donna

Tuesday, April 26, 2005 7:16 AM CDT

Good Sleepy Morning,

Nicholas and Spencer had a wonderful weekend. Dad slept all weekend! I've never seen him sleep so much. I think it was total exhaustion!

Nicholas is back to his old perky, pesty, sparkling eyed little tickler! He loves to play argue and will just glow! He is rotten to the core!

We did have a cbc yesterday and most already know that his platelets were down to 10k! Transfusion Circus time again! They told me to be there at 8:30 pm and they didn't start the transfusion until 12:07 am! We arrived home around 3 am! I'm extremly tired today, sleepy, achy, eyes hurting, and did I say tired???? I said that wasn't going to happen again! I lied! I'm between a rock and a hard place. He HAS to have his platelets or I would have left. I now have a Plan B! I will let you know how it works! If I can remember it!!!!

Please remember ca/emily, she has had a stroke and the family is asking for prayer. Remember us too.

Keep Looking Beyond,
Donna

Friday, April 22, 2005 7:06 AM CDT

Good Morning,

Nicholas is feeling much better and Spencer is happy to have his playmate back! Mom is feeling better but Dad is still suffering from allergies. Nicholas still has a runny nose and sneezing but overall, he is feeling perky!

It rained really hard and I looked outside when it quit and there was a beautiful rainbow in the sky. It lifted my spirits up so much! I love rainbows! Dad told the boys, "Only God can make a rainbow!" That is so comforting. Nicholas then told his Dad why the rainbows exist, "Its a promise from God that it won't rain all over anymore!" I thought that was cute! Of course, I grabbed the camera. They boys had to have their camera but it didn't show up with their polaroid. I took one of them and said, "Here's my rainbows!" Spencer smiled so sweet.

Don't forget to order our wrist bands, bears, and auto magnets! We need a cure badly. Pray for our miracle. We will have to make a decision shortly on what to try next, so be praying on that.

Remember Kelly Fultz'daughter, Ashley. She is expecting and in her 8 month and she fell in church on Sunday and it put her into labor. Please pray for them. Kelly was with Ashley at the hospital when she received word that her son had been in an accident. Whew! Pray for comfort during this trying time.

Also, Pray for /ks/nathan, his bone marrow transplant was Wednesday, the 20th for Fanconi Anemia. Apryl, va/apryl was suppose to have hers yesterday but I haven't heard from them. Still pray for /ca/emily for the GVHD, graft vs host disease, this is when the marrow attacks the body or vice versa. Remember the empty arms and broken hearts.

Pray without ceasing,
Donna

Thursday, April 21, 2005 7:11 AM CDT

Hello,

I can see a slight improvement in Nicholas. He tolerated his feeds better yesterday evening. He slept through out the night without coughing and getting sick. Thanks for praying for him. I know this is going to hit his bone marrow as it tries to fight these allergies off. He hasn't been very active and still has a couple of bruises on his knee. I'm sure we will be doing a cbc on Monday.

Sorry this is short but I'm not feeling well this morning. Thanks for all the orders for the Auto Magnets! They are selling well! Order your's today and I'll mail them to you! They would be great for your fundraisers! The heart in the center is detachable and then the ribbon could be for any and all bone marrow issues!!!

Spencer is feeling a little better too. He got to help Dad mow and played outside with Papaw!

Remember all the children with problems and the families,
Bear Hugs and Blessings,
Donna

Wednesday, April 20, 2005 7:08 AM CDT

Hello,

Nicholas has to be suffering from allergies. His eyes are watering and nose is running. He looked so pitiful yesterday evening. He is so nauseated that we are having a time getting any calories in him. You can tell from the photo that his lips continually peel. Is that a part of FA? Who knows? His lips do that all the time and more so whenever he has a fever. Even when he is hydrated!

He was sick during the night a couple of times and I could not get the gas to come out the vent tube. That made me so mad and then he threw up out his mouth and his trach. I was furious at myself! Why he has to suffer so much is beyond me. Now, I know beyond a shadow of a doubt that he has aspirated! I had to turn his rate down to 50 cc per hour. He has lost another pound and looks so frail. It is heart wrenching. The home health nurse is doing blood cultures and trach cultures today and I know what his trach will grow! Aspirated formula! I'm still mad! AAAARRRRGGGGGGHHHHHH! Sometimes, I just cannot get the vent tube to work in my direction especially when he is trying to get relief by burping. The amount of gas on his tummy pushes the contents up and out! I vented his little tummy all evening and Mary did most of the day. Pray for some relief for him.

Pray for strength for Mary and all of us. Thanks in advance. Pastor Danny said to "Speak Life to our children" That is so hard when I see him suffering so much and feel so helpless.

Jeff and Nicholas look like two peas in a pod! They are so sick with allergies, it has to be that! Nicholas was in the hospital this time last year! Pneumonia, same ole same ole!

Remember Spencer too, he doesn't understand when Nicholas is this sick and needs a lot of attention too. Pray for our patience as well. It's really hard on him and Mom and Dad as well!

Remember /ca/emily, she is suffering from severe GVHD stage 4. BMT has engrafted 100 percent and now she is in serious condition. Remember the family as well.

Pray without ceasing,
Donna

Wednesday, April 20, 2005 7:08 AM CDT

Hello,

Nicholas has to be suffering from allergies. His eyes are watering and nose is running. He looked so pitiful yesterday evening. He is so nauseated that we are having a time getting any calories in him. You can tell from the photo that his lips continually peel. Is that a part of FA? Who knows? His lips do that all the time and more so whenever he has a fever. Even when he is hydrated!

He was sick during the night a couple of times and I could not get the gas to come out the vent tube. That made me so mad and then he threw up out his mouth and his trach. I was furious at myself! Why he has to suffer so much is beyond me. Now, I know beyond a shadow of a doubt that he has aspirated! I had to turn his rate down to 50 cc per hour. He has lost another pound and looks so frail. It is heart wrenching. The home health nurse is doing blood cultures and trach cultures today and I know what his trach will grow! Aspirated formula! I'm still mad! AAAARRRRGGGGGGHHHHHH! Sometimes, I just cannot get the vent tube to work in my direction especially when he is trying to get relief by burping. The amount of gas on his tummy pushes the contents up and out! I vented his little tummy all evening and Mary did most of the day. Pray for some relief for him.

Pray for strength for Mary and all of us. Thanks in advance. Pastor Danny said to "Speak Life to our children" That is so hard when I see him suffering so much and feel so helpless.

Jeff and Nicholas look like two peas in a pod! They are so sick with allergies, it has to be that! Nicholas was in the hospital this time last year! Pneumonia, same ole same ole!

Remember Spencer too, he doesn't understand when Nicholas is this sick and needs a lot of attention too. Pray for our patience as well. It's really hard on him and Mom and Dad as well!

Pray without ceasing,
Donna

Tuesday, April 19, 2005 7:46 AM CDT

Good Morning,

IT has happened! I added another ID to myself, I am now the Tooth Fairy!!!!! Nicholas lost his first tooth yesterday in Dr. Begley's office. He looks simply adorable! I was just so thankful that he had just gotten platelets! He keep saying, "I can't believe it! I lost my first tooth!" He bumped his tooth on my leg and then just pulled it out. Didn't cry or anything! I think he was shocked! Spencer was totally amazed at the hole the tooth left! I clicked away last night and he was inspecting it! It was hilarious!!! I couldn't help but laugh.

His cbc came back with platelets at 54k, hgb 12.1. That is all I have at the moment.

The Auto Magnets are in and selling well!!!! If you want some, just let me know! Email me for the postage price!
I'll have more bracelet in a day or two! If you want one, please get your order in early! I can't keep any in stock for long!!!! Selling like "hot cakes!!"

I want to thank you all for the prayers, we really need them. Dr. Begley wanted to admit Nicholas yesterday but I refused! I asked him to order me a Pulse-Ox so I can check Nicholas' oxygen levels and I would feel comfortable taking care of him at home! Some one asked me if I wasn't scared to keep him at home and if we were at the hospital, then we would have help! I laughed and said, "The ER is just a half an hour away, I can get help there faster than I can at the hospital!!!!!" It took 2.5 hours to get a suction cansister changed but I realize the respiratory therapist was in the ER with another little girl that had cerebal palsy with RSV! The nurses weren't allowed to give me one!!?! I should have gotten one out of another room and put it on myself! Policies stink sometimes! I needed suction, but thankfully Nicholas went to sleep and didn't require much suctioning. His secretions were horrible for a while.

Pray for all of us and all the children taking treatments. The girl that is in a coma is Robin Herald. Pray for the family too.

Keep looking beyond all trouble and strife, all the cares of every day life...
Donna

Monday, April 18, 2005 8:52 AM CDT

Hello,

Nicholas is still breathing too fast. I'm racking my brain trying to figure it all out.
His arm was infected from the PICC line. He wouldn't move his arm and would take the right hand and lift his left. After they put him on the big gun antibiotics, he is now able to move his arm better. The PICC line had migrated back in his vein on Friday, so this wasn't the initial problem. We, mostly me!, had to pull the line back out and cut the dressing off! It was tricky but I managed to do it without cutting the line. PTL! The head nurse said, "You are steadier than I would be!" ???? Then the dr came and pull it out some more. The line still wouldn't work and they had to put TPA in the line and let it set for 4 hours and then pulled it back out and the line worked. It must have had a clot in it. The TPA breaks up blood clots. Thank God it workded. At one point, Nicholas looked up at me and was so short of breath that he had to take a breath in between words and said, "Mom, I'll get my strength back!"
Broke my heart! I reassured him that yes he would get his strength back! What an unstoppable spirit! Yesterday, he was able to play outside and thinks he can do everything like before and ended up falling and hurting his knee and leg! Cried to go outside!

We are getting a cbc again today and the home health nurse is there right now to check him out and get the blood. I'm worried. We may just be headed to Cincinnati today.

Thanks for all the encouraging messages and prayers. I have slept some and Sissy Bear let me take a nap yesterday.

Remember all of us, Jeff is suffering from allergies and feels terrible. Pray that Nicholas will begin to breath easier. Pray for Spencer that he will understand what is going on.

Remember all the empty arms. Remember someone named Robin, had breast cancer and now is in a coma.

Bloom wherever you are planted,
Donna

Saturday, April 16, 2005 9:10 PM

Nicholas didn't have to go to Cincy; his arm had not swollen any bigger.
He got his red blood cells and came home, but....
Donna has to give him 2 antibiotics. He still can't tolerate formula; he is taking Gatorade at the rate of 35 and is still barely tolerating that. I just took his chicken and dumplings up to him; he just looked at them, didn't taste them, but that is ok. At least they are there if he wants them.
He is breathing a little faster again and is still so weak. I told him 2 bear tales earlier this eve and he had Mamaw captured; she was telling him some tales, too. He doesn't tire of bear tales!!! He could sit all day listening to stories, read or made up, he doesn't mind. He is like a sponge; soaking up all that vocab.
If we could just give him strength!!! If only....
Keep praying. He is having a harder time this round; he just doesn't seem to have strength to fight this infection. pray a special prayer for Donna; she is like a zombie.
Sissy Bear


Saturday, April 16, 2005 2:42 pm
Well, NIcholas had trouble with PICCU Line; they worked on it til 2:00 this morn. It finally began working about 6:00. He is just now getting red blood cells; they got the platelets in last night. He might have to go back to Cinncy. I will keep you posted.
Keep praying.
Sissy Bear

Friday Eve, April 15

I just came from visiting Nicholas!! He was bossing me around---he is feeling better!!!! He would not let me talk to anyone but him; I had to sit on his bed and tell bear tales!! PTL he is doing much better. X-rays showed that his lungs are clear; the PICCU Line is in place; they didn't have to remove it. He is getting transfused tonight, both red cells and platelets! He still can't tolerate his formula; just gatorade is making him sick. I don't know when he is coming home, but I have the chicken thawing. When I told him what I was doing, he started licking his lips! Until next update!






Friday Morn, April 15
Donna called. Nicholas' arm is hurting and swollen; she is waiting for a call from Cin. She doesn't know if the PICCU line will have to come out or what. The Dr. doesn't know about it yet; he doesn't make his rounds until noon!!!
I called the hospital and Nicholas talked to me; he wants me to come to the hospital. I'm going as soon as I can get away from here; I have two tests to give this eve. or I would have left already. As I hear I will keep you posted.




Thursday night, April 14
Sissy Bear here!
Nicholas' temp has been 103; it dropped today to 99.4, but went back up to 101 tonight. They started him on another med ordered by DR. Harris tonight after some "gentle" persuasion by his mom. They wanted to wait til his temp went to 103!!!!???????????? Don't ask me. He did play a little today with a balloon Daddy Bear took him yesterday. He has not been talking nor responding; our baby is sick!!Hoppefully, this med will kick in and he can come home tomorrow. I'm going to cook him some chicken and dumplings; that will bring him home!!! Why didn't I think of this earlier?!
Yes, his song was a blessing! I think the preacher was revived himself! He was still feasting on the song last night.
Yes, God is reaching a lot of hearts through Nicholas. He knows how to reach each heart, even if it is through a child. Nicholas can walk up to a total stranger and say, "I love you." Usually, it is someone who needs to hear those words, too! Isn't God amazing?
Thanks for all your thoughts and prayers.
Love,
Sissy Bear

Tuesday, April 12, 2005 7:25 AM CDT

Good Morning!

I'm back. A quick update for today as I have a ton of work to get to. Nicholas was getting worse on Thursday and we had to get his meds changed. After a big hassle, he is back on the good meds and after a couple of doses, I could tell a big difference. On the other hand, he is very hoarse and coughing a lot. The night time is worse and no one is getting any sleep, not much anyway.

He did sing, "What A Day" in church last night. He said, "My song blessed everyone's heart!" It did too!

Nicholas and Spencer have had a ball all week-end, playing outside. We put the feeding bag in the back of the gator and Nicholas can play and get his food too! He loves it!

Nicholas fell yesterday and has a big bruise on his knee. His little wrist were scraped. It breaks my heart when this happens. He was in too big a hurry to tell me there was a wasper in the house!

Remember all the children with chronic problems and no solutions. Remember the empty arms.

Blessings and Bear Hugs,
Donna

Thursday, April 7, 2005 7:10 AM CDT

Hello,

It is with very sad hearts that I'm greeting you this morning. Davaan passed away yesterday and I'm very heart broken. He was so special and just a pure joy. He was a sunbeam, that is for sure and will be greatly missed.

Nicholas is having another round of c-diff symptoms. He is so sick at his stomach and had blood in his stool again yesterday. It still isn't keeping him in the house when the sun is shining! He played and rode his Gator most of the day yesterday. Spencer rode the JD Tractor! I was labeled as a John Deere Mom! I thought that was too funny! Thanks Chris! That actually made me smile!

Pray for the saddened FA world this morning and for all the families with empty arms and broken hearts.

Khalita, I'm glad you are feeling better and got a little boost from the transfusions.

Blessings and Prayers,
Donna

Wednesday, April 6, 2005 7:55 AM CDT

Hello,

Nicholas and Spencer had a great time outside yesterday and also when I got home. I didn't even make it in the house until around 7 pm! He played ball with Kenny's girlfriend Sharon. She played and played with them. Nicholas would kick it really well and then ask, "Mom, didn't I do great?" He played hard for an hour and then crashed. He turned pale and was nauseated. I had to take him in and he fell asleep! I guess he was just exhausted. Mamaw and Papaw came so he didn't nap too long! He probably would have slept the night through! Around 4 am, he had a bad gas spell and just about threw up! I hate these violent spells. I'm wondering if it is the c-diff. I don't think this medicine is working really well. His c-diff seems to be coming back by the smell of things!!! Get the picture?

Spencer's face actually had a rosy red tint last night! I told Dad that it was a sun burn! I think he did get some sun, no joke! He is rotten! I could just squeeze him to pieces! He wants attention too and would ask me if he did great too!, mocking everything Nicholas does! He is a pure ham! He wanted to go home with Kenny and cried his heart out when we had to go in! He didn't want supper! Then wanted my spagetti! I was just bragging that he was out of the terrible twos! He was just tired, sleepy, and played more than usual! He slept really well last night! Mom and Dad did too! I was exhausted and I know poor ole Dad was too!

Pray for us, we need direction and guidance to make decisions on what meds to go on next, if we don't get our miracle! Yes, it can happen at any time. I'm still hopeful! That is when God really likes to work, when it seems all else has failed, He chooses to touch! That is what He wants anyway, our total dependance on Him! Not only in the major issues of life, but the little things too. The next time you hear a bird sing, think about it! If we don't praise God, the rocks will cry out to Him, as the birds already do. He deserves all our praise! Thank God for every day of life, it's the best gift ever! God's mailbox is never full, knee mail Him!

Blessings and Bear Hugs,
Donna

Tuesday, April 5, 2005 10:40 AM CDT

Hello,

Nicholas cbc came back with platelets at 13k!!!! hgb was 10.8 and an anc of 1062. The dr sent order for platelets, we arrived around 8pm and guess what time we got home! 3:30 am! If I'd known that was going to happen, we would have waited until today. I'm too tired to be upset! Nicholas was so tired he just started crying. He would not go to sleep! He missed his mask and string, he chews on! I'll try to post a photo showing this!



Thank God for the donor on 3/31/05! Nicholas received O patelets and he usually does better, longer time between transfusions when he gets O !!! Thanks!

We need a blood processing place here in our area! That way we wouldn't have to wait 4-5 hrs on the arrival of the precious bag of gold! They were supposedly ordered 3 hrs before we went for transfusion! I'm not sure what happened!!! My hope and wish is someone rich would read this site and get a center started here! New Life Blood Center!? Good name and a good start!!!! Any takers???

Pray for all of these children needing blood products! Pray for our miracle,
Donna

Monday, April 4, 2005 5:46 AM CDT

Good Morning,

The weekend was ok. Nicholas isn't back to 100 percent but I can tell he is on the mend. He gets a cbc today and I know his counts are lower. I'm guessing 13k but would really feel blessed if they are 10k. He has more bruises last night. I told him no rough housing but yeah right! He wants to play and wrestle so bad. He would run and fall in the floor! I love to see him playing but...

He looks really pale and dark around his eyes and head. It kills me to see him this way. He also has lost more weight. I noticed as we were leaving the hospital that the pants he was wearing were more baggy! It broke my heart. The jeans he had on use to be too tight!

I was so happy to hear the angels chatter this weekend. It's music to my ears, I just love listening to them! I just didn't know that angels stuck out their tongue!! Spencer is getting some bad habits! He began to think before it happened again! I think he picked it up from cartoons! He clung to us this weekend, he had missed us so much. He giggled and giggled yesterday at Nicholas. I was trying to nap but couldn't for laughing at Spencer! I love to hear him laugh!

Remember all the children going to transplant, fl/ty will be leaving sometime this week if his donor is comfirmed. Pray for us for the decision of what medicine to put Nicholas on.

Blessings,
Donna

Friday, April 1, 2005 7:33 AM CST

Hello,

We arrived home last night around 6:30 pm! Nicholas sang and told me bear tales (but I went to sleep on him!) all the way home! He is feeling so much better! He amazes me!

He did get his PICC line in on Wednesday morning, but Dr. Kelly was going to let him heal some before they put it in! I guess it's hard to stop a rolling train! It happened and is now in use! It flushes much easier that the other one did. This one is bigger, a 4 french! I hope it can last up to a year, like they think! Pray for that to happen!

Nicholas has c-diff in his colon! It is horrible smelling and very painful! He was dehydrated and had to be bolused with fluids. His heart rate came down after he received some fluids. He perked up by Wed. night and started talking and playing with me. I knew he was on the mend then! The ER dr took one look at his stool sample (looked like tomatoe gravy!) and said, "C-diff!" I knew it had blood in it! He was so nauseated and couldn't tolerate his formula and I put him on gatorade until they got the IV fluids running and then we let his tummy rest. I put him back on his formula last night and about a hour later, he had a vilolent gas spell and still has diarrhea! I know he has lost weight! His pants are so baggy! It breaks my heart. They put him on Flagl, another antibiotic! It can lower the platelets too.

Antibiotics kill off the good bacteria and the bad bacteria (c-diff) flourish! Then, we have to give another antibiotic to kill the bad bacteria! I told you it was a vicious circle!

Spencer smiled from ear to ear when he saw us! He went to Nicholas and said, "Which arm?" Hugged him and all was back to normal! Snuggles and hugs and kisses! Mamaw and Papaw brought up a fresh made chocolate pie! DEEEELICIOUS! and very much welcomed! Thanks Mamaw, you are the greatest!
Thanks to all who called and checked up on us, we love you all and you help us more that you will ever realize!

Guess how many FA bracelets I sold while in the hospital? 17!!!! I always carry them with me! I could have sold more adults but didn't have enough with me!!! Kristina, take some more to hospital!!!

Pray for all of us, especially Nicholas. He is on the mend but his intake is way below where it needs to be. Pray for his healing. Pray for all the children and the empty arms.

Blessings,
Donna

Wednesday, March 30, 2005 8:43 PM CST

Sissy Bear is back!
I visited with Nicholas yesterday eve before he left for Cin. Childrens Hosp; he had an appointment today for port or piccu line. He was not feeling well at all, so Donna and Jeff took him on to ER; he was admitted. His fluids were low, temp, couldn't tolerate his milk. They don't know what is wrong, but have done blood work and are waiting for results. I called this eve, but he didn't feel like talking!!! I know just how sick he is if he doesn't want to talk. Please pray for him, his mom, dad, and little bro.
Spencer is here with me; I don't know if we will stay the night here or not; he has mentioned home a couple of times this eve.
Please remember us in your prayers.
Love you guys,
Sissy Bear

Tuesday, March 29, 2005 8:42 AM CST

Good Morning,

Nicholas' cbc came back after a couple of hours with his platelets at 15k! Hgb was still at 11.6! ANC at 2059! Thank God they were as high as they were! I guessed at 16k!

Nicholas was a little droopy while waiting for the bloodwork! We wanted to go to a resturant to eat but the lab was backed up and took longer than we thought it would! We decided to get something and take it home! Spencer was starved to death by the time we got home! He ate a whole piece of chicken and some hush puppies too! Dipped in Ranch dressing of course! He look adorable in a long sleeve white shirt with bib overalls and cowboy boots! No, I didn't get a photo! He was a little grumpy and wouldn't cooperate with a photo shooting Momma! I did get one on Easter! Jeff said, "Can't we have anything without that camera around!" He hates cameras! Sorry Dad, I have to try to capture every second!!!!!

That is the way of things when you have a child with a fatal illness, you want to capture every possible memory but we actually realize that is impossible! The best ones are the heart memories! Like last night, Nicholas reached up his little arms and said, "I love you so much Mom!" Melt down time! How do you capture something so precious! You can't, it's impossibe to capture all the love that that child gives. "I love you!" are his words. He tells everyone that, many times over! Three little words spoken by an angel and giants fall! I love watching them tumble! Little miracles every day and we are too blind to see them. Lord, please take the scales off our eyes so that we may see clearly.

Blessings and Miracles for Frannie, Katia, Julianna, KylieJae, RachaelJoy, Jo, Jacy,Davaan, Wesley, Maria, Ty, Benjamin, Will, Joshie and Jamie, oh, the list could go on for pages!
Donna

Monday, March 28, 2005 7:24 AM CST

Good Morning,

A beautiful morning it is! Everything just freshly washed off with the rain, birds singing out praise to God, what more do we need besides a cure for all these chilrens's diseases? God is good! You know, we ask for cures but God may have totally different plans for our children. I need to humble myself and ask for God's will to be done. God's plans for all these children are far greater than anything we can offer here on earth. It still doesn't hurt to ask though! He may just extend their time on earth for our pleasure or send us miracles, I pray so. Pray for acceptance of God's will for all of us that are going through a fatal health condition.

Easter was wonderful for the boys! I was sick but the boys were great. We all made it to church and then to Mamaw Boggs for her birthday and Easter dinner! The boys colored eggs with Aunt Cathy and Michelle couldn't sit anywhere but beside of Nicholas! Thanks to Dad, he did most of everything that needed to be done! I didn't accomplish one thing but sleep when we got back home. I was chilling and covered up with afgans and slept! I feel better today though!

The boys brushed their teeth and afterwards Nicholas asked, "Mom, can I have an enormous cup of water?" I think he was thirsty!!! I couldn't help but laugh! He has been feeling great! I did find a knot on the back of his head with a bruise! I think they bumped heads on the swing! They did get to go outside and ride the Gator and JD Tractor on Saturday for a while! They played and played, on the swing, slide, and the riding toys!

Carolyn brought them big stuffed roosters for Easter! They were adorable. I did get photos but left my camera home and can't download them today, maybe tomorrow!

Nicholas only had droopy time in the evening but he still can't go to sleep until late! I can hear him playing in the bed! He has been doing great! I can tell his counts have dropped some because of the bruising and darkness around his mouth or he is playing more! We will take him in for a cbc today and will know later this evening. Hopefully, he will not need a platelet transfusion.

We have decided to put in a PICC line. Hopefully, they can put in a little bigger one and it will last longer. We will be going to Cincinnati on Wednesday for this surgery. Please pray for my little guy.

If you want wrist bands, please email me your address so I can mail you some! If you can send a little extra for postage, I'd appreciate it.

Since we cannot post other CB links, please email me your child's link if you need prayer and we'll post it to the Prayer Bears. Heidi has created a list for adoption if you are interested in adopting a family to pray for them.

Blessings and Miracles,
Donna

Friday, March 25, 2005 6:44 AM CST

Good Morning,

After 4 finger sticks to get enough blood, the home health nurse took it to the lab only to find out it had a clot in it! I ended up having to take him to the lab yesterday evening for a big surprise! His platelets were 28k! I guessed 25k! I was so thrilled! His hgb went back up to 11.5! Did I say I was thrilled!? His ANC was 4968 and he had missed one dose of his G-CSF. The only down side was overall his counts are low and his wbc was elevated. I'm still excited with my little miracle! It was a miracle to me and I'll take the little ones! Gladly!

Spencer wanted pizza so we went for pizza and actually went in to eat! That was the first time just the three of us had eaten inside a restraunt by ourselves! It was different!

Michael, Sissy Bear's son is getting married on Sunday, March 27! They have all gone to Arkansas for the wedding, even Mamaw and Papaw are going! We will miss them terribly! Congratulations Michael and Robin! I pray that you have a lifetime together and that your marriage will be blessed beyond measure. I'm so sorry I can't be there!(Sniff) My heart is there and I love you both! Brandon, you are getting a wonderful 2nd Dad! We welcome you to the family with open arms! I just had a wonderful thought! I'm getting another niece too!!!! Robin, I know you will make a beautiful bride!

The WRIST BANDS are in! Email me if you want one, they are so pretty!

May you all have a Blessed Easter and remember it's not about bunnies and eggs! Christ is risen!
Donna

Thursday, March 24, 2005 7:16 AM CST

Good Morning!

It seems so odd not to be writing DAY ** of Oxandrolone Trial at the top of the journal every day! It also seems so odd not to be giving him any meds! I keep thinking there is something I'm forgetting! Nothing to do and miss it??? What am I? Crazy? I should bask in it while it lasts, for it won't be like this forever! It amazes me that we get a small break and it feels like a vacation! What was it Krisstina said? "I met you all and feel like we have a breeze!" I knew we were good for something! It makes others appreciate how good they have it even though they are facing challenges too. Met us and you get a perspective change!

I was being prepared again the last time Nicholas went to hospital but Nicholas had had two wonderful days and I couldn't figure out what was coming! It made me realize that I cannot let my guard down for a second. Nicholas got his g-csf shot yesterday and he perked up even more! He was bouncing around everywhere and felt wonderful! He called me and said, "Momma! I got a Flu shot!" They think all shots are Flu shots since Spencer received his!

Spencer was tired, sleepy, and nothing satisfied him yesterday evening! He didn't want Nicholas' teacher there! He didn't want anything! I made chicken salad and he helped me! Then we made banana pudding and I made a face with the mini wafers! I was pretending he couldn't see when I placed the banana layer in it and said in a squeaky voice, "Oh no, I can't see anything but bananas!" Spencer went in the opposite direction and laughed so hard he had tears in his eyes! One extreme to the other! It was funny! It put him in a much more tolerable mood that is for sure! It just takes a crazy Momma to accomplish that!

Nicholas couldn't go to sleep for asking questions about the central line. Then after several "Mom! I want ice!" or "Tell me about Mary, Martha, and thier brother that died!" I told him a really short version and he said, "Can I sing you a song?" I was delighted! He sang, "I love you, You love me...", the Barney song! So precious. I thought he was going to settle down but, again, he said, "Mom! Come!" I went to him and he said, "God takes such good care of me! He watches over me and I love Jesus. I thank God for His gift!" I was speechless and finally asked, "What gift?" He said, "I just told you! He watches over me!" I said, "And?" Then he said, "Everybody isn't made like me, I should have been made healthy!" while dropping his shoulders and sighing really big! What could I say? God makes us all the way He wants us to be. I said, "I know baby, but we will make it through all of this! It will be alright! It's ok!" That satisfied him and he laid down and went to sleep. I asked Mary if they talked about any of this yesterday and she said "No!" He is a very deep thinker! Wise beyond his years! As Mary said this morning, "He glows when he talks about God!" He does.

Pray for all of the children going through treatments and the caretakes making decisions.

Spread the word...if you want your child added to our Prayer Bears, please email me the link. It isn't through CB and we can pray all we want to for these families that need prayer.

Blessings and Miracles,
Donna

Wednesday, March 23, 2005 10:25 AM CST

*Blood Drive BSG, Walmart 1 to 5 tomorrow! Give!

Hello,

Nicholas' medicine came last night and he is getting his injection of G-CSF in a few minutes! Please remember him. He isn't on any antibiotics and I have a fridge full of antibiotics and no way to get them in!

Cincinnati doesnt want the PICC line replaced but how are we going to get a platelet transfusion in! IV?! He will need something so we can give him platelets in order to do a PICC line? He may not need a PICC line at all!!! I don't think that we can go for a long period with just IVs. He is a very hard stick! That is why we went with a port two years ago!! His best vein is in his big left toe! It would be wonderful if we could go without a port or central line. Central line, Hickman will probably be our next option if we can get the outlet away from his trach area! Oh, this is so complicated! Decisions! Decisions! Decisions! Options, and more decisions!

We will have another CBC tomorrow! Nicholas asked questions and was real worried about it last night. He kept saying, "Mom! Come!" I would go to him and he would repeatedly ask, "What are they going to do a CBC for?" HE finally settled down and went to sleep. I did too. I don't think anything could have awakened me! Except for two little boys, one coughing and one wanting Momma! And I woke up once praying for all the children! I did get some much needed sleep though.

Pray for all the children, pray for the parents/caretakers making decisions. Pray for more blood and platelet donors!

Pray for miracles,
Donna

Tuesday, March 22, 2005 6:51 AM CST

*New Photos added!

Hello,

We are extremely exhausted, frustrated, and did I say sleepy? What an evening! Understatement by a million miles!!! We arrived at the ER in JC around 5pm. We were put in a room rather quickly because I told them he was immune suppressed! By 6:30 pm we hadn't seen a nurse let alone a dr! We were visited by a Physician's Assistant and she said a nurse would be back in a few minutes and we didn't see her until Jeff told them what was going on. After a few scenes in the circus, with different actors brought to the room, one call from a hemotologist and the PICC line was removed in about 5 minutes just 6 hrs later!

His platelets were down to 45k. The line wasn't moving in any direction and they couldn't get the TPA in and didn't even try when I told them it wouldn't budge. They pulled the line and Nicholas will have an injection of Nupogen(G_CSF) today. He just won't get any antibiotics. Cincinnati will be informed this morning and I don't know what they will think. Who knows?

Nicholas and Spencer had a great time playing with the chairs and walking the halls last night. They both went to sleep on the way there and back! They had a great time! Mom and Dad are the ones who are sleepy!

Pray for miracles! Pray for Dakota, his brain tumor is back and the family is requesting prayer. It's so sad. Please pray for guidance and wisdom for the treatment. These children are my heros.

Praying for miracles,
Donna

Monday, March 21, 2005 6:41 AM CST

**Nicholas' PICC line isn't working at all! Whew! Please pray for it to start working properly.


Hello,

We had a good weekend. Nicholas and Spencer back to singing and playing, making wonderful music to Mom's ears. They continually play medical stuff, taking an animal to visit someone in the hospital which breaks my heart. The toys of choice are still "Orangy, the snake, Sharkie, the long handled wrench are all Nicholas and Spencer's are "Little long horn bull, and anything he wants to carry around! Trucks, little black kitten, puzzles, Sheriff's badge was a big hit this weekend too! Thanks Libbey! Little Horse finger puppets were too! Nicholas played with them all the way to Cincinnati! Also, thanks for the Easter card and stickers Kathy/CA! Thanks to Racquell for the cards and the green heart. Spencer's eyes lit up when he saw it! Thanks for taking the time to brighten up two little boys life!

Nicholas is scheduled to have his port put back in on the 30th. That will be the 25th time he will be put to sleep! He has a cbc and some other tests today. I think his counts are still up. I pray so anyway.

Thanks for all the prayers. We had very uplifting church services all weekend that were greatly appreciated and needed. God is good! Continuing praying for miracles. I'm still rejoicing over our miracles that are coming our way. Pray for wisdom and knowledge for all parents making decisions for their children. I know we aren't the only ones!

Pray for more miracles,
Donna

Friday, March 18, 2005 12:05 AM CST

Hello!!!

We are home and there is no place like it!! Spencer came through the door and eyes went directly to Nicholas right arm where the blue bandage was hiding the PICC line and wanted to look at it and said, "Hi Brother! I missed you!", then it was on to Mom and Dad. Hugs and kisses all around and then on to playing. They had missed each other so much. I missed the sounds of playing too.

Nicholas did well and said, "I'm a trooper aren't I mom?" He cried so pitiful before the surgery and had everyone else crying. That was the first time I've cried in front of him but made it to the bathroom before he saw me. Should have gotten it out of my system before hand! We arrived to the surgical room and Nicholas puckered up and said, "Mom, can we talk about this?" "I'm just a little scared!" I held and talked to him until he was out. The 24th time he has been put to sleep and it doesn't get any easier. Why not? He is getting older and realizes what is going on and where he is. He didn't want the gas and he didn't get it. They used his port to put him to sleep. When it was overwith, he immediately looked at his arm and said, "Did they put in a PICC line?" Still groggy but knew exactly what was going on! He is amazing!

He will be on antibiotics for another week at least. I am game to keep the PICC line in for a while if it will last. I'm so tired of trying to fight these bugs out of his little system. It seems so hopeless. Then I get so angry and want to zap them to smitherines! Is that a word?? You know what I mean!

Our options? More steroids! More side effects! A different regimen for a immune-surpressed bmt with different drugs that haven't been tried on FA patients! All questionable! As in dosage for FA, side effects for FA patients and their dna damagable cells. Too many unknowns! Too many questions, too many decisions, and not enough clear answers.

Nicholas did get to meet Jo and Jacy Box, another family with FA! Mooooove over past girlfriends! Jo and Jacy are on the front line now!!!! Tooo cute patooties! Nicholas was hugging them and sneaking Jo sugars!!! "I snuck that one in and don't tell Mom!" I'm going to have to watch that boy!!!!

Pray for all these children and families making major decisions! Pray for the decision makers and the families struggling. Pray for all these families.

Praying for miracles,
Donna

Thursday, March 17, 2005 8:50 AM CST

Nicholas is home!!! He came through "with flying colors," he said. He is asking for cherry pie, chicken and dumplings!!! I'm getting ready to take them to him in a few minutes!! I was almost ready when they got back home!!
I had to go buy buttermilk or I would have had them done on time!! Everybody says I'll be late for my own funeral! Oh, well.



Good Morning!
Mary talked briefly to Donna last night; Donna was talking to another parent while Nicholas was running around screaming and having a good time playing hide-n-seek with 2 little girls!!! Yes!! He had the port removed and a pic line put in yesterday, but when there are girls around....!
Doesn't he amaze you? He has a great attitude which is healing within itself, but we know why and where all these blessings come from, don't we? Isn't God good? What would we do without Him? If you don't know Him personally, you need Him in the worst kind of way. What if this were you going through this with your child? What would you do? God knows all about you and would carry you, too, and He would gently remind you that He's there. All He wants is for you to acknowledge and praise Him. That is our sole purpose in life--that is why we are on earth--to serve God. When you realize this, your life will never be the same. Once you make that decision and turn to Him, you will be the happiest you've ever been. Yes, you will still have problems, but you will have God to turn to and totally depend on. It is so different, knowing He carrys our burdens for us; they are too great for us to bear.
He is definitely carrying us; He deserves all the praise and glory we can give and then some.
Hopefully, Nicholas is on the way home and will arrive safely later this evening.
Thanks for all your prayers.
Love.
Sissy Bear

Wednesday, March 16, 2005 8:20 AM CST

Sissy Bear here.
Pray for my little sister! She didn't update yesterday;she said she didn't feel like it! She does have a bad cold, but I am not sure that is what she meant. Please lift her up this morning and today. Don't forget Jeff either. Don't you wish there were something we could say or do to comfort them? All we can do is pray for them and be there to listen when they feel like talking. Only God has that comforting spirit; isn't God great? He is carrying them right now!!! Not only is He there for them, He is there for everybody in whole world!!!
They are in Cin.; she called last night after they got all the equip. packed in and settled. Nicholas has his port taken out today at 1:00 and a pic line put in his arm. Pray for this surgery, too. They are supposed to be coming home tomorrow.
At first, Spencer said he was going to spend the night with Papaw and Mamaw, but when it came time for bed, he wanted to go home. I took him home and spent the night with him. He was more content and went to sleep almost as soon as his head hit the pillow. All this is tough on the little fellow, too.
Thanks for all your prayers; thanks for signing the guestbook. Nicholas loves to have them read to him.
Love,
Sissy Bear

Monday, March 14, 2005 9:45 AM CST

Hello,

I guess I've put it off long enough! I don't like to journal anymore...

A lot has happened! Miracles, Dropping the Oxandrolone, Port Infections, Red Cell Transfusion AGAIN!, and platelet transfusion. One hassle after another at the hospital! It amazes me the number of times I had to ask, "Do you have your alcohol prep?" AAARRRGGGG! No rest for Mom! Always have to be on your toes and it's total nonsense! You would think the RNs would know to clean, clean, clean, any type of access that goes directly into the system! I'm so disgusted! It is no wonder that there are so many infecions and disease in the hopsitals. It is spread because of lack of cleaniness from the nurses! Some are dedicated and some aren't. Some are there to draw a paycheck and that is ALL! Besides incompetant nurses there is the drs dropping the ball! I wouldn't leave a loved one in the hospital for any length of time by themselves for anything in the world, unless they were well enough to care for themselves! Where on earth did common sense go?

Sorry guys! I'm frustrated and need to vent. If you are a RN and are reading this, then please try harder to take care of these children or sick adults! They need professional caring care! If you don't know how to take care of a mediport, then ask and find out! I'm sorry! Ignorance isn't bliss in this case!

Back to the reason for this website: My sweet precious babies and dealing with this horrible monster, FA! Nicholas made it to Day 227 of the Oxandrolone Trial and was taken off the Clinical Trail due to "NO RESPONSE!" I received this ground breaking news while we were at the hopital! Talking about depressing! I know, I've been saying that for months but to literally be told there is no hope with this medicine is such a let down. I guess I wasn't expecting the "punch in the gut" feeling. It made everything more real, the lack of hope, the turmoil of making more decisions on what to try next, etc. First things first, the port is coming out on Wednesday! Yes, another surgery and a PICC line put in. I'm so exhausted and there isn't a chance to rest or sleep.

Which brings me to another thought! Don't call me and tell me what a relaxing week-end you had!!!!! I think my "Friends" like to torture me!!!! I'm going to write a book of "What NOT to do, when a friend is going through a major crisis!" Another called, yawning, stretching, and purring, still in bed at 11:30 am!!!!!!!! Yes, you know who you are! Thanks a million! ;>) Hey, I have to insert some humor!

Pray for Nicholas during surgery and all the children going through transplant or some type of treatment. Pray for hope and wisdom for the decisions on their care. We are basically at the mercy of the drs and thier knowledge. Pray for bolts of enlightenment to hit the drs!

One more thing, I came the closest of witnessing a miracle that I can remember, except for when Nicholas stopped bleeding at birth. Nicholas was in the ER, temp went to 103.3*, respiratory was in the 30-40 range, pulse 166 and he went into a deep sleep. Breathing slowed so much that I thought he was going to stop breathing. I was mesmerized and was starting to panic. He started mumbling something and just sat up a few minutes later, a totally different child. Sweat started, fever broke, and he was perky! God touched that child through the miracle of prayer. I will believe nothing else! Someone touched the throne of Grace and Jesus intercepted to God on Nicholas' behalf. Thank God for another miracle. Mary witnessed this too and will verify what I'm telling. We haven't talked about it but I'm sure her version will be close to mine. I'm still in awe at the power of prayer. Thanks Prayer Bears and all the others who were praying for us.

Nicholas broke out in hives again with the platelet transfusion. I'm taking my own Benedryl from now on. I'm packing an emergency bag to take to the hospital from now on too. As Sissy Bear stated, Nicholas started singing during the red cell transfusion! Thanks to the donors for the 2nd Chance with the blood products. Please go give blood and platelets.

Praying for another miracle,
Donna

Sunday, March 13, 2005 2:12 PM CST

Sissy Bear here again!
Nicholas is at home on 2 antibiotics! He wasn't feeling too well this morning; he didn't get to go to church. He called me before church and said, "you know why I can't go to church, don't you?" We missed him and Spencer, of course.
He is weak and gets tired easily. Please storm Heaven for him, his mom and dad, and Spencer. Spencer worries about him and he has to stay home a lot, too.
Donna always requests prayer for all the sick children and to remember those going through transplant at this time. I want you to know that she prays constantly for you guys. She is always telling me who is going through what; not only does she deal with Nicholas, she is remembering you and hurting with you, too. Lots of times, she talks, I listen, and we cry together. It seems like I know some of you already, even though we never have met face to face.
Apryl, I have met and love dearly. I think she is up for transplant this month or next. We haven't heard an update. She is on our hearts and minds and we send lots of prayers her way, too.

Remember: A FAMILY THAT PRAYS TOGETHER WILL STAY TOGETHER.

May God bless and keep you and yours.
Sissy Bear

Friday, March 11, 2005 9:29 PM CST

Sissy Bear here! Sorry, I didn't think to update; I had parent-teacher visitation, mostly had Nicholas on my mind.
Donna did bring him home today; he is on meds for pseudomonas and staph in his port; he has to take another med or two for a couple of organisms they found in his trach. But he is singing!!! Donna said that halfway through his red blood cell transfusion, he started singing!!! He is like his mamaw; she loves to sing, too.
Please storm Heaven for Nicholas, Donna, Jeff, and Spencer. It is tough for all. Then pray for the rest of us, too. We all need your prayers.
Thanks for every thought and prayer.
Love,
Sissy Bear.

Wednesday, March 9, 2005 9:27 AM CST

**Temp is over 102* now and that was with tylenol. Going to ER. Pray for us.

Day 227 of 228 Oxandrolone Trial

Hello,

I’m having a hard time getting started on journaling today. Nicholas counts were lower than we wanted of course. Options we have are:
1. Go off the Oxandrolone Clinical Study but stay on Oxandrolone at a higher dose.
2. Go on another androgen, Oxymethalone, which has bad side effects, but what doesn’t?
3. Go on another medicine that may or may not help. That is the option for all of them evidently.
4. Go on another medicine that may or may not help!!!!!!!!!!!!

Are you getting the picture? We are down to trying anything and everything to get a response from his marrow. We need a miracle. At the moment, I’m comfortable stopping the Oxandrolone and seeing what his marrow will do on its on! Thinking back, his infections began when we started the medicine but in reality, his counts were falling and his ability to fight off infection has diminished. Medicine? I don’t really think so but who knows for sure. When we stop the Oxandrolone, I guess we will see exactly what it was doing. If his counts plummet, then we will know the Oxandrolone was holding it up some! If they go higher for no reason, then it’s obvious! The reason we went on it was because his platelets were on a steady decline. I just pray for something good to happen.

On a lighter side… Sissy Bear was speaking too much Spanish last night and Nicholas said, “Sissy, let me teach you to count in English!” “Now, repeat after me, One….!” It was hilarious! I couldn’t help but burst out laughing! Too cute!

A Spencer funny… he came running into the kitchen and scared me yesterday evening. I screamed and told him to pick up my heart that fell into the floor! He stopped in his tracks and looked around and then looked up at me and laughed. He said, “MOM! It’s stuck in your chest with bubble gum!” I haven’t a clue where that came from but I loved it! Too funny! Oh, how they can make me smile!

Pray for all of us, the extended family too. It’s hard to understand the situation fully unless you are directly involved with his care. He has two huge bruises on his legs. Terrible bumps! I ask him what happened and he said, “I guess it was the table when I climbed up on it!” I can’t hog tie him and keep him immobile! He flopped down on a pillow and hit his head on a rocking chair but it wasn’t a hard hit. It scared me into a million pieces!

Mary just called and said that Nicholas isn’t feeling well at all with a temp of 100.2*. Please help me pray for him to feel better. I pray he isn’t getting a virus or the flu. His counts would definitely fall if he has to fight anything else.

I’ll keep you posted,
Pray for miracles,
Donna

Tuesday, March 8, 2005 7:40 AM CST

**Platelets are 23k, hgb-8.6, anc-1020!

Day 226 Oxandrolone Trial, 2 days of medicine left and we don’t know for sure what we are going to do…..stay tuned!

Good Morning,

Nicholas had a wonderful day yesterday. He slept late and woke up a totally different child. He laughed and played all day. I think he was just exhausted and needed to get more sleep! He was rotten and pesky! I love it when he is like that! The twinkle was back in his eyes and the “I’m up to something” smile was on his face! He hadn’t read that message in the guest book from his secret admirer either!!!!!

He told everyone he talked to on the phone, “I love you!” That is he favorite thing to tell everyone. Unconditional love, that is what he has! Not only for Mom, Dad, Spencer, and family but for everyone he meets! He is the epitome of love. He is so sweet. Spencer doesn’t say it as much but shows it. He will just walk up to you and give you a kiss. Last night, Spencer leaned over and kissed Nicholas on the head. Precious and priceless! Nicholas will pet on Spencer too. How precious they are!

Spencer has found something else he likes to do! Take my braid loose and brush my hair!!! He had a ball yesterday trying to brush it with a baby brush! He went to the kitchen and carried a stool back to the bed room and proceeded to take my hair loose! He is something else! He also gave me a flu shot! A BIG one! Then he pretended to give me blood! It breaks my heart that all he knows to play is “hospital” or “dr”! I guess that is all we do!!! Play “Dr!”

I wish I knew all that the drs knew! I would be trying a blue million different meds to help my child. Yes, I need lots of patience, so get busy and help me pray! I need a miracle for my baby. It is scary to be stopping a medicine that is suppose to help. We are getting a cbc today and another port culture. I’m praying that his platelets are still up, 50k would be fine with me! 100k would be a whole lot better! Oh, we need a miracle.

Pray for all the families that have lost loved ones this week. Pray for all the ones on a treatment of some kind, for hope and a cure.

What would you be doing if it were your child? Where is our compassion? Why aren’t we helping each other, bearing one another burdens like we are suppose to do? I know for a fact these families that have a website need you, your support, and most of all your prayers. If you feel lead to become a Prayer Bear and want to spread cheer, join today and begin praying. If you can’t pray, let us know and we’ll pray for your salvation. We aren’t the only group that is helping others, if you don’t want to known as a prayer warrior, then join another group but do something! We would welcome you with open arms. One stick can be easily broken but a bundle is a lot harder to break! One prayer warrior can easily be discouraged but a group is a lot harder to break up! Keep the faith.

Pray without ceasing,
Pray for miracles,
Donna

Monday, March 7, 2005 12:18 AM CST

Day 225

Hello,

We've had a good weekend, no major mishaps. Nicholas did have a very hoarse voice a couple of days. Tylenol cold help him get over that. I was worried it was strep or something. He has tolerated the Synercid really well. No diarrhea, Thank the Lord. I have been pleasently surprised!

We will culture his port again this week and he will probably be on antibiotics for another week. Hopefully, he will get over this infection too!

Those boys have everyone wrapped around their fingers! It is so funny to watch! I love it! It is a total melt down when someone falls in love with them! I can't blame them though!! I love listening to them laugh and play. They have said so much that I can't even begin to remember it all! They keep me in stitches that is for sure.

Pray for all the ones on treatments! We are down to the days on Oxandrolone! No definite plan as of yet! This is very nerve wracking for me and Dad! Constant worry so pray for us too.

Pray, Pray, and Pray some more,
Donna

Thursday, March 3, 2005 7:00 AM CST

Day 221 Oxandrolone Trial

Hello,

The new antibiotic, Synercid, came around 7 pm last night! The home health nurse came around 6 and Nicholas' blood pressure was up, had a temp, high pulse rate and respiratory rate! He wasn't running a fever a half hour before! That is how quick he can get sick! He was also wheezing! You couldn't tell anything was wrong except for the fast breathing! He was playing and having a good time, not running around but sitting at the bar! I was so thankful that the antibiotics were on the way. We prepped him with Benedryl and Tylenol before the antibiotic and he did fine. I was worried about a reaction with a different antibiotic! Yes, I just had to pick it back up and worry some more!!!(Read Yesterday's Post!)

Another worry, is he keeps scratching his head where the V-P Shunt(for Hydocephalus) is. I would hate for something to be going on with it too. I have a suspicion that this bug is on that artificial device too! It may be the source! That is what I found out about this Staph Epi that is in his port, it likes artificial devices and creates a slime on the plastic parts! His V-P Shunt has a line just under his skin that runs down his neck and into his abdomen cavity. Could this be why he stays so nauseated? Probably! Have I mentioned this to drs? Numerous times! And ready to tell it again until someone listens to me! The only problem with this shunt is that it isn't working! He still has fluid on his brain but shows no problems with it and they want to leave it alone for now. If they tap it, it could take infection in directly to his brain. We don't want that! The other plastic devices he has are his trach and Mic-key Button but those are changed pretty often without a surgical procedure! Dr. Mom does that!

Did you check out the little Teddy Bear? It is so adorable and will be available in white also! Please email me with your order anytime, so I can get an idea of how many to order. We are working for a CURE FOR FA! That can only be done through research. Thanks in advance for your order.

Spencer is fine and going strong! Mary Bear said he was a good little boy yesterday! He is sweet and precious. He has a hard time dealing with a sick brother that hogs all Mom's attention! Bless his little heart, he needs lots of special attention. Pray for extra strength for us to meet all the needs of our family.

Please help me pray for all the children on some type of treatment. Pray for hope! Pray for miracles!

We need a miracle,
Donna

Wednesday, March 2, 2005 6:55 AM CST

Day 220 Oxandrolone Trial

Hello,

I'm in a fog! I am aching all over and feel rotten! Mentally and physically! I hope and pray it is not the flu! I think I'm allergic to sleep! I slept like a log last night but must have laid wrong on my pillow. My neck is sore! Could it possibly be because I couldn't move for a little snuggle bug in bed with us? I barely woke up enough to realize he was getting in our bed and went right back to sleep! I woke up this morning with his arm thrown across me and hugging my neck! What better way to wake up? Being hugged and cheek to cheek with a sweet precious baby. He did this night before last too! He is sleeping better though and growing straight up!

Well, it seems we are on the wrong antibiotics! New ones should arrive today! It is the same bug in his port as before but this time it is resistant to the antibiotic that he was on before! Is this bug becoming use to the antibiotics and becoming resistant to all the antibiotics we feed it? What if that continues? The port will definitely come out if that is the case. What if it is in his little system and we cannot get rid of it? What if....I could go on like this for a year! I'm so glad God takes care of "What IF's", don't you? There, Lord, I'm giving it back! Please help me not to pick it back up! It's too big for me to handle anyway!

Whew! I feel better already! God is good all the time and all the time God is good!, quoted from Ann Eckstadt! Thanks Ann! I love it!

Pray for Nicholas that these antibiotics will take care of the bug in his port. Pray for a cure, a miracle for his bone marrow whether it be through medicine or whatever the Lord choses to do. I know all He has to do is speak it and it would happen, please help me plead for this to happen or bless the medicine to boost the marrow or just however He chooses to bless. Pray for Jeff and I to have the patience, wisdom, knowledge, and did I mention patience?, grace, and keep our sanity. If Jesus has other plans for my baby, please pray for grace for the entire family.

And Nicholas is just one child, there are numerous ones that also need miracles.

Pleading, praying, begging for a miracle,
Donna

Tuesday, March 1, 2005 7:09 AM CST

Day 219 Oxandrolone Trial

Good Sleepy Morning!

As some already know, we went for a transfusion last night! His platelets were down to 10k, hgb-8.8, and the rest I don't even know yet. I haven't received my faxed copy yet. The transfusion was just about over when he started squirming and I check him. He had broken out into a couple of hives, one on his hip and the other on his shoulder. He was scatching his head too but I couldn't see anything there. For some reason, I knew it was going to happen and wouldn't hardly take my eyes off of him. We had to stop the transfusion and give him epinephrin and it stopped the itching immediately. Thanks to the A donor who took the time to donate on the 25th!

Dad and Spencer went with us. Spencer was eating chips and Nicholas ate some too. Spencer said, "We're having a party!" I said, "Yes, a platelet party!"

Spencer fell asleep on the way home. Nicholas was grumpy from the Benedryl but he has been feeling bad all weekend. He would cry at the drop of a hat some times. It may be the Oxandrolone but I think he is just feeling bad. I'm sure I wouldn't be half as civil if it were me and my counts were this low. God love his little heart. He is a true hero.

We had Mamaw a little party yesterday evening. She loved the purple roses on her ice cream cake! Spencer sang "Happy Birthday" a dozen times, much to her delight.

Remember all the children on the brink of The Incredible Journey to Heaven and their families.

Blessings,
Donna

Monday, February 28, 2005 6:35 AM CST

*Antibiotics are on the way! Home health made it through the snow and finally got enough blood for cbc and cultures. Port wasn't working the best but they finally got it! Keep praying!

Day 218 of Oxandrolone Trial

Good Morning,

First and foremost, we don't have antibiotics yet! They were ordered Friday evening but we haven't received any yet. I'm fuming. I had some Clyndamycin to give via g-tube and I started him on that Saturday. I figured some in his little system is better than none. He ran a temp of 99.4* last night. I'm holding my breath and praying he doesn't get any worse. He is droopy.

Which brings me to Saturday and the wedding, he turned pale and started crying in the middle of it! It was his shut down time and Aunt Cathy went and brought him to me and he cried his little heart out. I think when the bride was saying those vows and started crying it got to Nicholas. He is so tender hearted. I put him back on his milk and he just laid in Sissy Bears arms for about an hour before he perked back up any. He later said, "I was happy too when I was crying!" He tries so hard to be a big brave bear! He is the bravest one I know! Spencer decided he could be a part of the wedding too! He held a song book and began, "Doo de dooo"ing! When? While the preacher was quoting I Corinthians 13, the passage on "The Greatest of these is Love!" Anyway, he was too cute! I guess I had better mention the little bride, Alexia! She was adorable and they looked so sweet together! Nicholas was scared of course! They walked up the isle and Nicholas didn't stand where he was suppose to! He went and stood beside of the groom! It was cute!

I know! I'm going backwards but on Friday, when we went to get the tux, there were several girls trying on prom dresses! Which was a huge delight to the boys of course! One tried on this red dress that didn't leave anything for the imagination and Nicholas and Spencer were all smiles! Nicholas modeled the tux and Spencer modeled "Bob the Builder" in front of the mirrors and they kept waiting for the girls to join them but they were all finished! It was so funny! Mary Bear got some photos of that!!! Thanks Mary, I'm glad someone was thinking! I'll have to get a copy and scan them in!

Going back to Saturday, Mamaw turned 76! Please wish her a happy Birthday. She tells the best bear tales on earth! We thank God for Mamaw and are so blessed to have her with us! She is a cancer survivor you know! She had a heart attack and they were reviewing her x-rays and saw a golf size tumor in her lung. She had half her lung removed about 15 years ago! It hasn't effected her singing very much at all! She still sings to the top of her lungs! She is a blessing to all of us and definitely an inspiration to many. She is the sweetest mother on earth! Thanks Mamaw for everything, we couldn't do without you! Spencer loved the chocolate pie she baked for him this weekend! Her birthday and she baked for Spencer! Spencer had made a comment that he didn't want Mamaw to come back up because he didn't like cherry pies! Nicholas like cherry pies and she buys them for him! I told him he was going to have to ask for a chocolate one! He did! Ask and ye shall receive!

Pray for all the children and adults on treatments. Pray for the parents or decision makers! Pray for the families too that have lost their loved ones. It hurts.
Nicholas is suppose to get a cbc and repeat cultures today but it has snowed here and may be postponed until tomorrow.

Pray without ceasing,
Donna

Friday, February 25, 2005 6:59 AM CST

**Port is positive for something!! ARRRGGGGHHHH! Pray it's identified quickly and he gets on the correct antibiotics asap. What a way to go into a weekend! Bummmmmmmmeeeerrrr!

Day 215 Oxandrolone Trial

Hello,

Well, Nicholas' bloodwork came back, Platelets were 16k, Hgb-9.5, and Anc-918. Overall, a little low. RBC-2.8 which was lower too. His temp came back down to normal during the day but went back to around 100* last night. He slept really well and didn't cough all night long. I didn't hear a peep out of him except one time when he turned back around and put his head back on the pillow! Yes, he was upside down in the bed! Spencer woke up around two and was hollering for "Momma" and when I put the cover over him and check to see if he had a fever, he went back to sleep. He is such a sweetie and has the greatest giggles!

Nicholas called me yesterday to tell me about the needle change! He said, "I was perfectly, perfectly still and didn't even have one tear!" He is such a brave bear! He wants Mary to pray and then will ask her to pray again! He is so sweet.

Nicholas is suppose to be in a wedding tomorrow! I'm not sure if that is going to happen or not! He says he will feel like it! He seems ok. Laughing and playing, just a little droopy and breathing a little fast. The dr in Cincy wanted a chest x-ray and we may take him this evening if he gets worse today. His breathing slowed down yesterday evening and I was hesitant to take him to that flu and stomach virus infested hospital! That is why the blood work wasn't back until late yesterday evening! The hospital is full! I'm so thankful that he didn't require platelets or we would have been right in the middle of all those bugs!

Thanks to all who gave blood yesterday at Pound High School! Sissy Bear was able to give and she was on cloud nine last night. Her blood type is 0 too! That means her blood can be given to anyone!!! She cannot give platelets for 56 days now! That is what they told her, so it will be sometime in April before she can give platelets. Sissy Bear is a brave bear too! She worked really hard to get her count up! Even ate liver!!! Thanks Sissy Bear! You're the greatest!

Pray for all the sick in the hospital too. Pray for Susan, our new banner maker! She is having kidney stones and in lots of pain. Pray for the ones on various treatments, clinical trial, chemo, radiation, etc. All hoping for a cure.

Keep praying,
Donna

Thursday, February 24, 2005 6:58 AM CST

**It seems that the hospital is full of flu and stomach virus and the lab is way behind. I did get a number on the platelets.....16K! I wanted 20 but I'll take 16...better than 7! Maybe they are on the way UP! I pray so!

Day 214 Oxandrolone Trial

Morning,

I can't tell if its good yet! I'm too tired and sleepy! Nicholas spiked a fever yesterday evening around 4:30 of 101.2* The tylenol took care of it and it bounced around but started going down and he was cool every time I checked on him through out the night. Thanks Prayer Bears for praying for my baby! God heard our prayers and cooled his brow. Keep praying that his blood work is up and an infection isn't starting.

By the way, if you want to join the Prayer Bears and adopt a child, please click on the Prayer Bear logo and do so. Lots of families need prayer and support. Thanks Heidi for starting this and for the bear blowing kisses in the guest book! That is so precious.

He felt good enough for school! Did really well for feeling bad. Spencer had to work in his workbook too! He is such a sweet heart.

I'll keep you posted on the blood work. I had to cut his feeding off around 3 am for some fasting glucose, liver, and kidney function tests. It worried me but since he had cooled off, he seemed to be ok. I'd much rather do the fasting part while he is asleep than when he is awake and asking for food. I'm thankful the home health nurse comes the first thing in the morning.

Remember all the children/adults taking treatments. Remember the empty arms, too.

Pray without ceasing,
Donna

Wednesday, February 23, 2005 7:14 AM CST

Day 213 Oxandrolone Trial

Hello,

Guess what we did yesterday evening? Hid Easter eggs inside! I know we are early but they love to hide eggs! We took turns hiding them and they did a great job! Some were hidden so well that we couldn't find them! Spencer would forget where he hid them all!!! It was so much fun. It's good to have fun!

One little mishap, Nicholas got Spencer's thumb with "Sharkie". Have I told you all about Sharkie? If so, please forgive me, for I'm telling it again! Sharkie is a pair of long handled pliers! This is one of his favorite toys! He found it in the tool drawer and laid claim on it. Sharkie and Orangy, the coral snake, are constant companions with the boys! Spencer started crying and said that Sharkie bit his thumb. Nicholas started crying because it scared him. That is the first time he has inflicted pain on anyone in his life! It scared him and he puckered up so pitiful. A bandaid took care of it! I think Spencer was shocked too! Sharkie apologized and made everyone laugh again and then the Easter stuff came out!!!

Mamaw, Papaw, Sissy, and Daddy Bear came and the boo-boo was kissed and the banjo was a total distraction!! Mamaw laughed at Daddy Bear singing "Kicking my Dog Around!" that he had to keep singing for Nicholas! Nicholas sang "What a Day That Will Be" and I captured it on video this time!!! Spencer requested "Jesus Loves Me!" but would not sing!

Those boys sure make monkeys out of everyone!!! They are so funny and we all love to hear them laugh! I'm am so blessed to have two beautiful angels.

Pray for a little girl named, Melody, brain tumor and getting her angel wings shortly. Pray for strength and comfort for the family. Pray for a little girl Hunter, ALL and on long term treatment.
Ty, is starting his transplant process for FA. Please remember them. Emily, FA, leaves today to begin her bmt process too. Please remember all the ones taking treatments too.
Pray for comfort for the ones with empty arms today.

Pray for Nicholas, tommorrow is blood work and needle change. I feel the real picture will be seen in the counts tomorrow. If his platelets are higher, the Oxandrolone will be working, if his platelets are back down to the 10k range, we will definitely be changing medicines. I have contacted the ones in charge and there is a chance we will give it until April, until after all the scans are completed again. Pray for wisdom for us as parents to make the right decisions and for knowledge to know when to do what. It definitely isn't easy.

Be Blessed, Give Blood!
Donna

Tuesday, February 22, 2005 6:43 AM CST

Blood Drive Today!!! Crutchfield/EMI, Norton 12 to 4:30....Give, it will help sustain life in some one!

Day 212 Oxandrolone Trial

Good Morning,

Nicholas had school yesterday evening and it was hard for him to get started. I had bought a new Leap Pad game (on sale! of course!!) and he was distracted to say the least!! Spencer loved the the Talking Word Factory game! He caught on really quick and has it mastered now!

Racquell was blessed by a little song bird last night! Nicholas sang the course of "What A Day That Will Be!" She told him his voice was angellical! He asked about Diane and Racq told him she was in Heaven. Nicholas looked at me so quick and asked "WHY?" Later, he wanted to hear what Racquell said about him again. I told him that her heart was heavy and his sweet little voice lifted her spirits! He said, "I know. That is my power!" I asked, "Who gave you that power?" He said, "God."

Then, the questions began...."Why did Diane go to Heaven?" I told him Jesus took her home and now she wasn't in pain. He said, "Oh, that is why Jesus called her home." He ask ed, "What is cancer?" I told him and he asked, "Do I have cancer?" I told him "NO!" He went "Whew!" with his tounge hanging out and rolling his eyes! Then the bomb hit. He said, "It won't be long and I'll go to Heaven." With my heart bursting into a million pieces, I said, "I hope not!" He patted my cheek and said, "Mom! I want to go be with my Father!" What on earth do I say to that? I said, "I do too Baby." One question after the other and then asked, "Why did Balaam beat his donkey?" He wanted it to go forward but it wouldn't because the angel was in front of it. "Why couldn't Balaam see the angel?" Because he wasn't obeying God and wasn't listening to the voice of God. "Why did the donkey see the angel?" Because it had more sense than Balaam did and the angel was in front of it!
On and on the questions went and Momma finally said, "Nicholas, it's time to go to sleep!" I finally made it to bed and then I heard, "Momma?" What. "Can I have a drink of water?" YES! I can handle that question!!!!

Pray for a little girl named, Melody, brain tumor and getting her angel wings shortly. Pray for strength and comfort for the family. Pray for a little girl Hunter, ALL and on long term treatment. Pray for comfort for the ones with empty arms today.

Pray without ceasing,
Donna

Monday, February 21, 2005 6:53 AM CST

Day 211 Oxandrolone Trial

Hello,

The boys have had a great week-end. I did pull out Nicholas trach on Saturday while taking his pjs off! He was in a panic! I put it back in and told him, "See you can breathe while the trach is out!" He said, "That is the first time!" He is so funny. I worried that it hurt him inside and would start bleeding. He did cough up blood later in the evening. He also got strangled eating pretzels, or the salt off of them and coughed some into his thermovent. Then, yesterday, he was eating some blue candy, powder form and coughed out blue mucus! He is definitely aspirating a little. He looks some better in his coloring. He is such a sweetie. I have noticed some mood swings and pray the oxandrolone is kicking in and will work on the bone marrow.

Spencer? Is pure Spencer! Hanging on to Mom like a leech! Eating much better and loves to play on the computer. He can turn it on, and start his Elmo Pre-school "game" that teaches them shapes, numbers, patterns, and has a session on feelings that you make a face to match the feeling. He will be frowning at Nicholas and turn to me and smile real big!!! Yes, he is rotten to the core! Maybe it will help him to sort out his feelings. He did really well this week-end. We went to church last night and they let him ring the church bell. He loved it.

Remember Davaan, his leukemia is back and they are preparing for his journey home to Heaven. His counts have fallen and he is being transfused. They are going to Disney next week if he feels like it. Please pray for comfort and peace for this precious family. They feel that Davaan has fought long enough and now want to have quality time with him as long as God lets him live. He is truly a warrior and a true hero.

Remember all the others taking treatments and have to face major decisions. Pray for wisdom, courage, faith, and most of all peace.

John, in Alabama, please email Sharon.

Pray without ceasing,
Donna

Friday, February 18, 2005 7:08 AM CST

Day 208 Oxandrolone Trial

Hello,

I didn't mean to have such a down journal entry!!! Some days are like that but most aren't. Some days are much worse!!!!

"Momma, God DOES answer prayer!" I know, what makes you say that? "My platelets were higher!" That is one of the statements he wanted me to get back out of bed and hear!
He is so sweet! He had to tell everyone on the phone last night.

They were laughing and playing so sweet last night. I love to listen to them playing.

My little guys had to help Momma make chili yesterday evening. Spencer wanted a hot dog and wanted some of that "brown chili!" Yes, Momma made chili and he ate most of a hot dog. He loves my chili. That made Momma happy!

Remember all the ones taking treatments of some type. Remember Racquell and Ed, the care givers of Diane Keel. They went yesterday evening to make funeral arrangements. Remember her family too.

Blessings in every little thing,
Donna

Thursday, February 17, 2005 6:56 AM CST

Platelets 75K, hgb-10.4, anc=3888!!
Nurse Bessie did great with one stick and one ouch! no tears during but a few before! He is such a Brave Bear! She brought him some Easter stickers!!

Day 207 Oxandrolone Trial

Hello,

Nicholas has blood work today. I cannot see a difference in him after the last transfusion. His coloring is still off and the bruises aren't disappearing. He still complains of being tired. I'm curious what his platelets are going to be today.

Kayla, it isn't easy to watch your child deteriorate. It's torment. It's heart wrenching. It's horrible. It's nerve wracking. It tears the soul out of you. It's very depressing but I'm not on anti-depressant meds! It's mind boggling. It keeps me searching for a cure. It makes me downright mad, angry, and oh, so helpless. My hands are completely tied. I may not be able to do a single thing to help my son but I continuously try to find the miracle medicine to boost his marrow in hopes of harvesting for gene therapy. Yes, I'm jumping at straws! When you are drowning and going down, you will grasp at anything, even a straw to try to stay above the water. The downward spiral gets faster the farther down you go. I feel we have hit the bottom and struggling to get it in 1st gear so we can move FORWARD. Right now the current is just pushing us along, we can't find 1st. When you do all you can and make the most of every day with your loved one, there isn't anything to regret. We do not have REVERSE for this trip! We won't be able to take this same trip more than once that is why we have taken lots of scenic routes along the way. It will only be by the Grace of God that we pull out of this abyss we are in and get in the FORWARD motion again. We don't know God's plans for us or our children. We do have to trust in Him and accept His choice for our life and theirs. God knows when they have suffered enough. Nicholas was telling Mamaw and Papaw that in Heaven, everything would be perfect. "No more mic-key buttons, no ports, no needles, and there won't even be trachs in Heaven, it will be PERFECT. I will even have thumbs!"

FORWARD to PERFECTION,
Donna

Wednesday, February 16, 2005 5:23 PM CST

Hello,

It is with sad hearts that we journal today. Remember the family of Diane Keel. Remember Racquell and Ed for their loss. They were dedicated to Diane and no one will understand to the fullest how they are feeling right now. Remember the children and the rest of the family. Pray for peace and understanding.

Until tomorrow,
Donna

Tuesday, February 15, 2005 7:03 AM CST

Day 205 Oxandrolone Trial

Hello,

Platelet transfusion! Last night! I called the lab and couldn't get a definite answer on when the platelets were going to be there! After about 3 calls, they said to come on in, they wanted to transfuse him because the platelets ran out at midnight! We was there around 8 pm and I opened the door for someone carrying a huge box. "Human blood products!" were the words on the box! We had arrived about the same time!!!! He received his transfusion of A platelets that were collected on the ninth of February! He is 0 and that is universal!!! That means he can accept different types! Go give platelets!! I'm so happy that someone did! Thanks to all who have gone and donated platelets in Nicholas honor! You are truly an angel.

The mobile blood unit will be at Mountain View Regional Medical Center (Old St. Mary's) collecting blood from 12 to 4 pm TODAY!!!!! Eat a good meal and then go give blood a couple of hours later! THANKS. There was an elderly lady getting platelets last night too. Someone needs those blood products and you know how much cancer we have in this area, give in honor of your loved one or Nicholas.

Spencer had a terrible time with me leaving last night. He woke up at 6 am and I hugged him. He said, "I missed you Mom!" He let Nicholas wear his Thomas shoes last night! He said, "You can wear them if you want to brudder! I'm getting to be a big boy and they are too little!" Well, I didn't know that!!!! They are actually a little big on him!! He is so funny. Dad said he cried and cried. It breaks my heart to have to leave him.

Remember Diane Keel, they have called the family in. They have stopped all treatments. Pray for them and for Racquell, her care giver. They need your prayers.

Remember all the others still taking treatments. The horrible side effects of the only hope they have have to be endured in hopes of a cure!

Blessings,
Donna

Monday, February 14, 2005 7:06 AM CST

Platelets are 12k! anc- 660 hbg-10.7
Also pray for Diane Keel, the family has been called in. Her link is in the drop down box above.



Day 204 Oxandrolone Trail

Hello,

Today is bloodwork day...don't know when they will get there or I'll get the results. He was so pale yesterday and so tired! Dad just tickled his legs and it ended up bruising them. I know he was devastated! Nicholas was having such a great time, laughing and tickling his Dad! I told them no wrestling but he just has to do something!! Tickling became the game of choice. It wasn't until later that I found the bruises! They are just little specks all over his legs. I know they will be lower today according to that! I keep hoping and praying they are higher but the evidence isn't corporating!

They boys have had a wonderful weekend. Sissy Bear made chicken 'n dumplings again! I told Nicholas to stop asking for them but he will not listen! She sent cherry pie too! He gets anything he asks for!!! He actually ate some too so what can I say! He ended up having a bad gas spell with his tummy on Sat. night. I barely kept him from throwing up but it was close. I know he didn't eat enough to hurt him so it couldn't have been Sissy Bear's cooking!!!! I just pray he isn't getting sick!

He is now off all antibiotics! I don't know what to do with myself! I was on the 10, 6, 2 schedule for so long and feel lost now! It was wonderful to drop one antibiotic and gave me a break. Now with none, I'll feel like I on vacation!

He just got out of bed on Sunday and said, "I'm so tired!" He was pasty looking, pale almost white. I was worried but he had more color a little later.

Spencer is ok, just having a Mommy crisis! I think he is scared I'm leaving and cries out for me all night long. He seems frustrated and mad at me during his dreams. It breaks my heart. He isn't that way during the day. It is so hard on him, I hope he isn't tramatized for life. I am only one person and feel like I'm stretched to the limit but I know everything will be ok. With the Grace of God, I'll have the strength I need to care for my babies. Sissy Bear came up Saturday and I took a good nap! Thanks Sissy Bear! I really needed it! I didn't realize how tired I was!

Remember all the ones taking treatments and having to deal with a sick loved one in their family. God's grace is sufficient.

Still praying for higher counts,
Donna

Friday, February 11, 2005 6:55 AM CST

Day 201 Oxandrolone Trial

Hello,

Mary Bear and the boys baked Daddy a heart shaped cake at Spencer's request! Nicholas and Spencer had a big time decorating it for Dad! He was surprised! They made him cards and it thrilled Dad! He hugged them and told them it was the best birthday ever! Dad's family didn't celebrate birthdays growing up and he just cannot believe I make a big fuss about it!!! He has 8 siblings and I guess they couldn't afford a big todo. Even after about 23 years of marriage, he really doesn't like a big fuss over him! He doesn't know about another cake coming his way today!!! I think seeing the boys enjoying the surprise helped him too! He let them light the candles and they loved it. Mary had found some tool candles for his cake and he really liked them! I took photos and will try to post one later today! Thanks Mary for all you have done!

I cannot believe that it was yesterday when Nicholas had labs. It seems like forever ago. His platelets were down to 13k, hgb 11.3, and anc of 2015. We are holding off on transfusion and getting bloodwork again Monday. Hopefully, no major mishaps this weekend. It is scary for his platelets to be this low and the possibility of him hitting his head! I don't even want to think about it. I know who is on call at the Home Health in case I need to call. Mic-key button has a little blood around it that is normal most of the time but gets worse when his counts are down. That is how I can tell most of the time. His little bruises on his legs seem to be fading more so than yesterday. I pray his platelets are going up!!! 20k on Monday!!!!

Pray for all the children and adults taking treatments of some type. It breaks my heart to see the side effects of most of the meds. It is only by the Grace of God that we survive them!

Hoping and praying for higher counts on Monday,
Donna

Friday, February 11, 2005 6:55 AM CST

Day 201 Oxandrolone Trial

Hello,

Mary Bear and the boys baked Daddy a heart shaped cake at Spencer's request! Nicholas and Spencer had a big time decorating it for Dad! He was surprised! They made him cards and it thrilled Dad! He hugged them and told them it was the best birthday ever! Dad's family didn't celebrate birthdays growing up and he just cannot believe I make a big fuss about it!!! He has 8 siblings and I guess they couldn't afford a big todo. Even after about 23 years of marriage, he really doesn't like a big fuss over him! He doesn't know about another cake coming his way today!!! I think seeing the boys enjoying the surprise helped him too! He let them light the candles and they loved it. Mary had found some tool candles for his cake and he really liked them! I took photos and will try to post one later today! Thanks Mary for all you have done!

I cannot believe that it was yesterday when Nicholas had labs. It seems like forever ago. His platelets were down to 13k, hgb 11.3, and anc of 2015. We are holding off on transfusion and getting bloodwork again Monday. Hopefully, no major mishaps this weekend. It is scary for his platelets to be this low and the possibility of him hitting his head! I don't even want to think about it. I know who is on call at the Home Health in case I need to call. Mic-key button has a little blood around it that is normal most of the time but gets worse when his counts are down. That is how I can tell most of the time. His little bruises on his legs seem to be fading. I pray his platelets are going up!!! 20k on Monday!!!!

Pray for all the children and adults taking treatments of some type. It breaks my heart to see the side effects of most of the meds. It is only by the Grace of God that we survive them!

Hoping and praying for higher counts on Monday,
Donna

Thursday, February 10, 2005 6:34 AM CST

Day 200! Oxandrolone Trial

Hello,

Happy Birthday Dad! We had a little box waiting on Dad this morning! He was shocked! It was a "Dad" ring! It wasn't the bulky ones but a little thin one! I knew he wouldn't wear a big one and was tickled pink when I found the little ones! It was definitely a surprise!

It is snowing here but the roads weren't bad. They have closed schools everywhere! Snow and the flu! I am worried about the flu issues with Nicholas and Spencer. Spencer ran a temp yesterday but didn't during the night. He looks weak eyed and pale but seemed better later in the evening. Nicholas had school and Ms. Phyllis said he did an exceptional job! Yeaaahhh! He was feeling pretty good.

Those boys and Mary Bear have been up to something! I have an idea what but will have to wait until Monday I guess!!! Spencer pulled out a birthday card he had started for his Dad but Dad didn't really look at it! He will get his cards they made this evening! They have been so sneaky and will not tell me what is going on. Their little eyes just sparkle!!! Precious!

We are getting Nicholas' needle changed today and another cbc. Pray! Pray! Pray! He fell against the book case and has a huge bruise on his arm and the other bruises aren't fading. That means the platelets are about the same or lower. I'm hoping that bone marrow will kick in and start producing cells.

Congratulations Ms Eva from NC! Ms New Gramma Eva!!!! I think Ms Racquell has adopted this grandbaby too!

Pray for Diane Keel, battling cancer and on some heavy pain meds as well as radiation treatments. Pray for all the children on treatments in some form or the other. Too many are sick!

Keep knee-mailing!
Donna

Wednesday, February 9, 2005 6:28 AM CST

Day 199 Oxandrolone Trial

Good Morning,

No Transfusion!!!! Not yet anyway! Thursday may be a different story. His platelets are back down to 14k! Hgb stayed at 11, and his ANC is 1475. I'm just praying his platelets will be higher tomorrow and start going in the upward direction!!!

Spencer was happy to see Mommy yesterday evening! He just hugged and hugged on me! Dad brought him pizza and he was one happy little camper! He loves pizza and could eat it three times a day! Last night as we were going to sleep, Spencer whimpered and said, "Mom, I don't want you to go to work! I want you to stay with us while Daddy goes to work!" Broke my heart. I know he doesn't understand everything and our life is so confusing to him. It is so hard on the siblings of a sick child. We had to talk to him about being rough with Nicholas and had to stop the wrestling completely for now. Nicholas didn't like that one bit! I just pray for all of us!

Nicholas has had a couple of episodes of crying, just bursting into tears without telling you what is wrong. Very moody or sensitive, reactions of the Oxandrolone? Most likely! Are we going to get a marrow reaction too? I pray we get a good reaction! No, a great reaction! Or Fantastic reaction would be much better!

We were playing "I Spy" and I said I spied a cutie patootie. Spencer pointed to himself and said, "Me!" I couldn't help but laugh. Nicholas kissed me and said, "You are my cutie patootie!" I just had a melt down there on the spot! So precious! They are the sweetest!

Please remember all the ones taking treatments of some type. Pray for patience, guidance, wisdom to know when to question the drs, knowledge of what to ask in the first place, and understanding.

Surviving by the Grace of God,
Donna

Tuesday, February 8, 2005 11:31 AM CST

Day 198 Oxandrolone Trial

2nd time I've updated today!!!! Lost the first one! ARRRGGGHHH!

Anyway,

Hello,

Today Nicholas gets bloodwork and should already be at the lab at this time! Pray for his counts even though the bruising is worse. Considering he is more active, maybe just maybe we won't be going for a transfusion!! Who am I kidding? You I hope! Why do I try to make things appear normal? When they are definitely not! I don't want you to worry. That is just the way I am. I'm the type of person to pray and then help Jesus make it happen! Pray for rain, take an umbrella!

My baby, Spencer was awake this morning. Dad had to lay back down with him and then he left for work asap. I wasn't so lucky, he woke up again before I left for work and I had to lay back down with him too. He didn't go back to sleep! and of course that made me late for work! I finally talked him into a smile and was able to leave. Whew! What a way to start the day!

Is the rest of the day going to be the same or worse? Not! It's already better! Every small blessing is a GIANT blessing at this point! Racquell and I are doing the happy dance together for good reports! Yes! Thank the Lord.

Remember all the ones taking treatments. Remember a lady that has breast cancer and they did bone scans on her today. She will start treatments soon too. Oh, I hate cancer and sickness.

Susan thank you so much for the banner. It made me smile. You are so talented!

Ask, Jesus knows how much I have asked.
I'm waiting for a miracle,
Donna

Monday, February 7, 2005 6:40 AM CST

Day 197 Oxandrolone Trial

Hello,

Nicholas and Spencer have had a wonderful weekend. We did make it to church yesterday and then took Nicholas to get fitted for his tux. He is in another wedding as a little groom! He will be adorable! I hope he will be able to do it and the weather is warm! Yes, I can ask for it all!!! I may not get it but I can always ask.

Nicholas will have blood work again tomorrow. No one wanted to wait until Thursday. He is bruising terribly and getting that darkness around eyes and mouth. He is complaining of being tired. I'm sure his platelets have dropped down some. I keep hoping they will get up and stay up. Why isn't that medicine working? There are other medicines available but not all FA patients respond to them either! It is so frustrating.

I think his appetite is increasing. He wants something to eat more often now. I hope and pray it kicks in and stays there! Wouldn't that be a miracle??? Am I asking for too many miracles? It doesn't hurt to ask!!!

Remember all the ones taking treatments of some form, pill, machine, chemo, radiation, therapy, trials, or transfusions. They all need prayer and the care givers too. I heard more request for cancer patients than anything yesterday. I don't know all the names but God does. He even knows the number of hairs on their heads. Yes, God knows what is best for us and we only have to trust Him. He can heal all our diseases or self inflictions as in drugs and alcohol. God can take the desire away. We have to turn it over to Him and let Him take control of our lives. He knows what is best for us but it is up to us to choose, that is why it's called free will. It is our choice, Heaven or Hell.

Trusting in the Healer,
Donna

Monday, February 7, 2005 6:40 AM CST

Day 197 Oxandrolone Trial

Hello,

Nicholas and Spencer have had a wonderful weekend. We did make it to church yesterday and then took Nicholas to get fitted for his tux. He is in another wedding as a little groom! He will be adorable! I hope he will be able to do it and the weather is warm! Yes, I can ask for it all!!! I may not get it but I can always ask.

Nicholas will have blood work again tomorrow. No one wanted to wait until Thursday. He is bruising terribly and getting that darkness around eyes and mouth. He is complaining of being tired. I'm sure his platelets have dropped down some. I keep hoping they will get up and stay up. Why isn't that medicine working? There are other medicines available but not all FA patients respond to them either! It is so frustrating.

I think his appetite is increasing. He wants something to eat more often now. I hope and pray it kicks in and stays there! Wouldn't that be a miracle??? Am I asking for too many miracles? It doesn't hurt to ask!!!

Remember all the ones taking treatments of some form, pill, machine, chemo, radiation, therapy, trials, or transfusions. They all need prayer and the care givers too. I heard more request for cancer patients than anything yesterday. I don't know all the names but God does. He even knows the number of hairs on their heads. Yes, God knows what is best for us and we only have to trust Him. He can heal all our diseases or self inflictions as in drugs and alcohol. God can take the desire away. We have to turn it over to Him and let Him take control of our lives. He knows what is best for us but it is up to us to choose, that is why it's called free will. It is our choice, Heaven or Hell.

Trusting in the Healer,
Donna

Friday, February 4, 2005 12:33 AM CST

Day 194 Oxandrolone Trial

Hello,

Nicholas' platelets are 42K!!! That is the difference between 150cc of platelets and 408cc of platelets via transfusion!!!! He goes a little farther on more fuel!! His white count is up to 8.5 which is a little high for him. He may be fighting something again! Face was flushed yesterday evening and temp of 99 when the home health nurse was here. His hgb is 11 and that has remained steady. He is still feeling good and wrestling around with Dad and Spencer! I love to hear him giggling! I didn't realize how much I'd missed it. Brings tears to my eyes every time I hear him laughing. He just bubbles over and Spencer will laugh so hard! I love to listen to them playing, have I mentioned that???

Nicholas is eating Sissy Bear's chicken and dumpling right now. He is going to tell her to make more!!! Buy more chicken Sis!! I'm having a gall bladder attack so don't count me in on eating any!!!! Nothing sounds good right now!! I was real sick last night but feeling some better today.

Spencer is looking at a Thomas the Tank Engine book and dreaming!!! He has been playing with little trucks and cars and the car wash! They love that car wash!

Thanks Debbie for the package full of goodies and valentines. They have played all evening and most of the morning with the little bears. They pretend they are their cubs and have had a ball with them! Spencer is mocking me type right now! He is so funny! I love being here with them. He doesn't take a nap when I'm home!! He is afraid he'll miss something I guess.

Pray for Mary Bear's husband, Charles. He has a ruptured disk in his back and they are at the dr today! He has been in lots of pain and foot has been numb! Surgery is in the future for him so be praying for them.

Remember all the others taking treatments of some type. Remember all the care givers too.

Remember my baby too for his miracle. We have dodged a transfusion today but Tuesdays counts may be very much lower. If you can give platelets and are O , please consider donating platelets. The number is at he top of the page, please make an appointment today to give. Many heartfelt thanks to whomever donated in the past and for the ones in the future. He could have a hemmorrhage anywhere if his platelets get below 10k. He hasn't had a nose bleed or bleeding gums and I'm so thankful. Him having a nose bleed would be terrifing with a trach. I don't even want to think about it.

Hoping and praying for a miracle, really soon!
Donna

Thursday, February 3, 2005 6:58 AM CST

Day 193 Oxandrolone Trial

Hello,

We are home!!! Quick trip that has left me tired to the bones! My heart was lifted yesterday, "Nothing remarkable about the MRI" other than the existing fluid that we knew was already there. The fluid is showing no signs of increasing the pressure in his brain. Thank God! We will only revise the shunt if the eye dr thinks there is pressure on the optic nerves. The eye dr will check again the next time he is under anesthesia.

Nicholas was blowing kisses when he came awake and immediately looked up to the anesthesia dr and said, "Thank you for taking good care of me!" The nurses were amazed! He was the comedian of the hour and had all those nurses eating out of his hand! They couldn't believe him! He is so precious and sweet.

He was very anxious about being put to sleep and the MRI! Daddy, trying to console him said, "Nicolas, if they did that MRI on me they wouldn't find anything but a watermelon!" Nicholas said, "I know Daddy!" I couldn't help but laugh!!! It was so funny.

Spencer was so happy to see us that he burst out crying!!! He was hugging us and just started boohooing! It broke my heart. Nicholas was so worried about him! He kept saying, " Spence are you ok?" Nicholas kept waiting for Spencer to hug him but he didn't until later and then he said, "I missed you Brudder!" Oh, how precious my babies are!

Nicholas has blood work again today! I hope his counts are up high enough that he doesn't have to have a transfusion. He received the LAST bag of platelets that were on the shelf last time! I hope and pray someone has donated more since then! If you can possibly give, please do so. Call the number listed above and set up an appointment to give platelets. Please.

Remember Diane Keel, she is in tremendous pain and discomfort. Remember Natalie, www.caringbridge.org/ma/natalie she is in PICU and needs three organ transplants. Remember their families and the care givers. Remember all the ones on various treatments too.

Blessings,
Donna

P.S. Debbie Estep, you actually made me laugh!!!!

Tuesday, February 1, 2005 7:02 AM CST

Day 191 Oxandrolone Trial

Hello,

Nicholas was so happy that his port isn't coming out and he doesn't have to have a PICC line! He cried, "Yippppeeee!" Exactly what I said!!! That was too funny.

He was so happy and I'm sure couldn't concentrate in school yesterday eve. The teacher said he did well but I have my doubts! He was so hyped up! I'm glad that he is happy and able to laugh and play. He is so much different with that red cell transfusion! I'm amazed at the difference in him. Yes, I know I'm repeating myself as I have done so the past few days but I'm so thrilled and I want you to understand what it is like. If you don't have a cause, you don't understand the seriousness of giving blood and platelets. It is actually giving renewed life. He came ALIVE!!!! He hasn't felt this well in so long, I couldn't imagine him at full force, healthy, and no problems!! That would be awesome! Fantastically awesome! And I think being refueled is awesome!!! WOW!

Now, get your mind on Nicholas and feel the need, the need to give blood and platelets. It is a blessing to give. Thank you donors for restoring my babys energy. Thank you, thank you, thank you, and thank you again. Being on the receiving end is a blessing to and so humbling. Thank you.

Remember all the ones taking treatments and on some form of medicine. Remember the care givers for renewed strength, wisdom, and courage. God's Blood bank is always open for transfusions. What type of transfusion do you need? An instant renewing of Faith, Grace, Patience, Salvation, Wisdom, Love, Hope, Courage, and a heart full of pure Joy. Ask and ye shall receive, seek and ye shall find. Thank You God for always having the fountain open and all we have to do is tap into it. And we don't have to worry about germs! That is so wonderful and fills my heart with joy.

Jesus was the first blood donor!
Donna

Monday, January 31, 2005 7:22 AM CST

**Blood cultures from the port are coming back negative!!! Port is staying in!!!! We still have to go for other procedures but I'm so happy!!!! If it shows up positive again, we'll have to do something then but for now it stays in!!!! Thanks for praying! Yipeeee!

Day 190 Oxandrolone Trial

Hello,

I'm trying to remember what happened last!!!! It was late Friday evening before he received his transfusion!!!! Same old story, same old fight! Incompetence! I know we aren't the only patient there but the orders were sent ahead of time this time and they still weren't carried out! I can get aggervated about it in a second! OK, let me explain! They will only give him 150 cc of platelets because of his weight, according to their hospital lab policy!!! They they throw away the rest of the platelets, which breaks my heart! The dr ordered an entire unit! They even contacted the Oncology dept in Kingsport! They cannot take orders from Dr Harris in Ohio but they listened to Dr. Kalwinsky in Tn!! He hasn't seen Nicholas in 3 yrs!!!!! I was furious! Just so happens, the charge nurse walked by and spoke to Sharon! She came in to see us and I told her the hospital policy needed to be changed! She asked what was going on! Within 5 minutes, she came in with a Lab tech, they were discussing the situation. I told them that Nicholas could tolerate the entire unit, he had several times before!!! They received another dr's opinion and he blessed the whole unit!!! That releaved the Lab from their responsibility and put it on the 2 dr shoulders! and mine!!!!! Nicholas received the entire unit!!! and did well, no problems at all! Thank God! Swoooosh, went my baloon and I crashed, after I came home of course!!!

Aunt Cathy and Mamaw Boggs came again and they baked valentine cookies with them. The boys loved it!!!
Sissy Bear brought up chicken, gravy, and dumplings again!!! Nicholas ate some of the gravy! He is rotten! Yes, he has Sharon trained!!!!

Overall, we had a wonderful week-end full of laughter and lots of hugs and kisses! Some wrestling with Dad and just hanging out together! We let the bed out that is in the couch and the boys thought that was the best thing in the world! We had a ball!

Getting geared up for this week! Getting all the ducks in a row! We are real tired and frustrated but still kicking! I'm just devastated that his port is infected again and it makes me mad too. Pray for us!

Pray for the families that are struggling and fighting for life. Pray that the nurses will have more common sense and do their job properly. Pray for peace of mind and comfort in the ones that are ready to take flight.

Remember when you are scared, Jesus is right there!
Donna

Friday, January 28, 2005 7:01 AM CST

**Platelet Transfusion!!!! Some time today!!! I hope and pray it will be better than last time.


Day 187 Oxandrolone Trial

Hello,

Nicholas asked for prayer as Anita was changing the needle and we prayed together. He was very anxious but did really well. He held his breath and didn't cry! He is so brave! He was so proud of himself. I pray the cultures come back negative so they don't have to take his port out. Please help me pray. The cbc showed his platelets have dropped to 18k. Short lived happiness! They have fallen from 95k to 18k in a week! I wish the cars could have stayed a little longer at the top of the roller coaster! These downhill plunges are killing me. Swooooooosh! We will have to have another cbc and it probably should be before Monday for sure. I'm in La La land today!!!

We told Nicholas he couldn't wrestle very hard last night and he was disappoint! They played some and he told me later that he has so much fun! Bless his little heart. Spencer cannot understand why he can't be rough!!! I think he understands some but forgets! He has started to aggervate Nicholas by pretending to bite or tickle him chasing him all over the house wiggling his fingers. Nicholas can't stand it and ends up crying! I noticed yesterday that he is realizing that Spencer is playing and they had the best time, laughing and playing. God is good!

Remember Diane Keel, a very courageous Cancer Warrior is in the hospital and needs your Cy-Bear Hugs. Remember all the ones taking treatments and the care givers.

Waiting for a miracle,
Donna

Thursday, January 27, 2005 8:12 AM CST

Day 186 Oxandrolone Trial

Hello,

Nicholas overheard me telling Aunt Cathy that his port had to come out and the questions began. He is getting too sharp. I answer only what he asks and do not tell him everything that is going to happen! He is such a worry wart and immediately started to cry. The first thing he asked was, "Are they putting in a PICC line?" while pointing to his arm. I told him yes. Spencer said, "What is a PICC line?" I told him it was a pheriphally inserted catheter. Nicholas said, "Oh, no! I can't wrestle with Daddy and Bubby with a PICC line!" Yes, he is feeling so good that is the first tradition he picked back up was wrestling with Dad!!! Spencer told him that he would be very careful!! Well, we have the bruises on his legs to show how much fun he has been having! They try to be easy with him but Spencer gets so excited he just cannot be easy at all! Nicholas is feeling so good he can't be easy either! That is a good thing! The feeling good part, anyway!

We are getting bloodwork today but Anita is late getting here. There was black ice at her house and she has to wait until her car thaws out!! Nicholas knows that Thursday is needle change day and he was talking to Sissy Bear on the phone (again!) and asked, "Sissy Bear, do you know what Thursday means? Needles!" He lives in fear of Thursdays and is constantly asking what day it is! Then he will say his days of the week until he comes to Thursday! He is counting the days!

Thanks Megan for the photos! Nicholas loved them! They are on the fridge! Thanks for whomever gave blood and platelets for Nicholas' last transfusion, it restored life and refuel him! It also brought joy, joy, joy to the entire family's hearts. Everyone can see such a difference! He was singing to the top of his lungs yesterday and I told Papaw, "I didn't realize he was feeling so bad, did you?" Papaw couldn't help but laugh, but it was with pure joy!

I found Mamaw a sweatshirt that said, "My Grandkids are the Beary Best" with three bears and hearts on it. She loved it of course!!!

Spencer is still up to his big tall tales! He told me the first thing this morning that he left his big sword at the big house he was building! He pretends to build houses all the time. He will tell me his progress. It is so cute! He told Sissy Bear that he was building her a big house! He will get started talking and there is no stopping him! Sissy said he had a motormouth which cracked Nicholas up!

Remember all the ones taking treatments. Remember the families and the care givers too! It is a wonder we can carry on a normal day and most of the time we are just functioning. Normal? This is our normal! Praying, worrying, and researching continueously, that is our norm!
Waiting for our miracle! Nicholas wanted me to sing, "waiting so long!" last night. It took me a minute to figure out what he was wanting and it was, "When He(God) is four days late, He is still on time." It is a song about Jesus raising up Lazarus! Yes! It broke my heart! I had to hurry out of the room and I don't know how I kept it in! Thank you God for continued strength. He is always faithful.

God still answers prayer,
Donna

Thursday, January 27, 2005 8:12 AM CST

Day 186 Oxandrolone Trial

Hello,

Nicholas overheard me telling Aunt Cathy that his port had to come out and the questions began. He is getting too sharp. I answer only what he asks and do not tell him everything that is going to happen! He is such a worry wart and immediately started to cry. The first thing he asked was, "Are they putting in a PICC line?" while pointing to his arm. I told him yes. Spencer said, "What is a PICC line?" I told him it was a pheriphally inserted catheter. Nicholas said, "Oh, no! I can't wrestle with Daddy and Bubby with a PICC line!" Yes, he is feeling so good that is the first tradition he picked back up was wrestling with Dad!!! Spencer told him that he would be very careful!! Well, we have the bruises on his legs to show how much fun he has been having! They try to be easy with him but Spencer gets so excited he just cannot be easy at all! Nicholas is feeling so good he can't be easy either! That is a good thing! The feeling good part, anyway!

We are getting bloodwork today but Anita is late getting here. There was black ice at her house and she has to wait until her car thaws out!! Nicholas knows that Thursday is needle change day and he was talking to Sissy Bear on the phone (again!) and asked, "Sissy Bear, do you know what Thursday means? Needles!" He lives in fear of Thursdays and is constantly asking what day it is! Then he will say his days of the week until he comes to Thursday! He is counting the days!

Thanks Megan for the photos! Nicholas loved them! They are on the fridge! Thanks for whomever gave blood and platelets for Nicholas' last transfusion, it restored life and refuel him! It also brought joy, joy, joy to the entire family's hearts. Everyone can see such a difference! He was singing to the top of his lungs yesterday and I told Papaw, "I didn't realize he was feeling so bad, did you?" Papaw couldn't help but laugh, but it was with pure joy!

I found Mamaw a sweatshirt that said, "My Grandkids are the Beary Best" with three bears and hearts on it. She loved it of course!!!

Spencer is still up to his big tall tales! He told me the first thing this morning that he left his big sword at the big house he was building! He pretends to build houses all the time. He will tell me his progress. It is so cute! He told Sissy Bear that he was building her a big house! He will get started talking and there is no stopping him! Sissy said he had a motormouth which cracked Nicholas up!

Remember all the ones taking treatments. Remember the families and the care givers too! It is a wonder we can carry on a normal day and most of the time we are just functioning. Normal? This is our normal! Praying, worrying, and researching continueously, that is our norm!
Waiting for our miracle! Nicholas wanted me to sing, "waiting so long!" last night. It took me a minute to figure out what he was wanting and it was, "When He(God) is four days late, He is still on time." It is a song about Jesus raising up Lazarus! Yes! It broke my heart! I had to hurry out of the room and I don't know how I kept it in! Thank you God for continuied strength.

God still answers prayer,
Donna

Wednesday, January 26, 2005 6:56 AM CST

*check out his counts after his red cell and platelet transfusions!!!

Day 185 Doubled Dose of Oxandrolone yesterday!

Hello,

Good news on the marrow!! No leukemia, malignancies, or blasts. He is hypocellular with only about 0-30f marrow in his bones. Our options are: double the dose of Oxandrolone, nupogen but all fa patients do not respond to it, oxmethalone that is known to cause bloody cysts in liver, chronic transfusions, or as a last resort a bmt. We chose to double the dose of Oxandrolone since Dr. Smith felt he had responded in a small way before. If it doesn't work in about a month, we will have to do otherwise.

BMT is not possible with pseudomonas (a bacterial infection) in his lung. I asked if the bottom part of his lung could be removed to elimate the chances of it flaring up during transplant. Dr Harris is consulting with the lung specialist to see if there is any way possible to get it out completely with antibiotics. Thinking back, there is no way they can get biopsies of the bottom part of his lung (unless they go through his back!) and the washings they did previously showed pseudomonas and that means its all over his lung not just isolated to the lower lobe. My opinion is that he has too many bugs in his system that are hanging around and will definitely cause major problems for bmt. The lung specialist may want to do biopsies this visit too. That would be signing a definite death warrant to go into transplant and him with so many infections. His little system is just too weak to fight off the normal bugs that are in the air and on the skin. But that is totally science talk and not God talk!!! I know God can touch him and make a bmt a success. Nicholas is in His hands and always has been.

The boys have said so many funny things and my mind is completely blank!!! I wanted to remember them so and should have written them down!!!! If they come back to me, I'll pass them on. They are so funny and sweet. I love to listen to them playing. Music to my ears!

Did I mention Nicholas is on another high powered antibiotic! He had a reaction to the first dose, broke out with a hive under his arm and a couple of blisters on his chest. It was an instant reaction and I couldn't believe it was the medicine. It disappeared by the time the medicine finished and hasn't had any allergic reactions since. We have to give him about 5 min. worth and stop it to watch for reactions, then we can finish it. Who knows?

His port is coming out next week. Meaning, he will have to have a PICC line put into his arm or another location for a while. They may go with a central line next time but if the bugs in his system aren't gone, it will become infected too. DUUHHH! That is just common sense stuff! I suggested a completly different location if possible!!!???

I tried to change the subject but you see where my heart is!!!

Remember all the ones taking treatments, Diane Keel, Apryl who is getting ready for transplant for FA, Will, Pam, the Tys, Khalita, Matthew, Kyliejae, Alyssa, and all the ones that I didn't mention but are on my heart and I check on. The family of Jack Baker also need our prayers.

God DOES answer prayer,
Donna

Monday, January 24, 2005 11:24 AM CST

Day 183 Oxandrolone Trial
Yes, we are still on it for now!!

Hello,

No decisions to change medicines have been made as of yet. We will make a decision after the bone marrow aspirate results come back.

Good news first? As Sissy Bear updated, Nicholas is prancing, dancing, singing, laughing, playing with boundless amounts of energy. Different as Daylight and Dark!!! Talking about re-fueled!! The red cells brought him back to life!!!!! Amazing difference! He sang all the way home except for a nap!!!

After hugging, kissing, laughing, and acting silly in front of Nicholas, Spencer informed him he didn't miss him!!! I burst out laughing!!! No one believed that!! Oh, we all missed each other so much.

Bad news! His port is infected with yet another bug and has to be removed!!! They wanted us back this week but it looks like it cannot be scheduled until February 2. The eye dr did get to look in his eyes while he was under anestesia and consulted with a neurosurgeon. The neuro wants a MRI of the brain and that will take place while he is under this next trip. Nicholas was too scared to do the ct scan while awake, he tried and said, "I'll try to be brave!" but he was just too scared. He was so pitiful. It broke our hearts too. I should have known better. We couldn't get it scheduled while he was under this time like we normally do. Hopefully, that will be different this time.

I did manage to get his port needle changed and his mic-key button while he was under this time!!! He was shocked and the first thing he said was, "Anita will be shocked!" Anita is the home health nurse that usually changes it. He will have a big story to tell her on Thursday!!!

Remember all the ones taking treatments and their care givers. Keep praying for our miracle.

God does answer prayer,
Donna

Sunday, January 23, 2005 8:08 AM CST

Sissy Bear here!
Nicholas is home again!!! There is a world of difference in him after receiving red blood cells and a platelet transfusion. He came prancing through the door, practically dancing! He and Spencer met with a big embrace; they were so happy to see each other. Of course, another embrace came later and some performing from Spencer which made his brother laugh.
I had chicken gravy and dumplings ready for Nicholas; he told me I had made his day. He knows what to say when!!!!
He told his mamaw and papaw, "God answers prayers!" From the mouth of babes....

Test results will come in next week; no decisions have been made at this time.
Love,
Sissy Bear.

Friday, January 21, 2005 10:52 AM CST

Sissy Bear here.
I talked to Donna last night; Nicholas did not feel like talking. It was about 9:30 P. M.; they had just given Nicholas red blood cells and was going to give him a platelet transfusion. They began yesterday morning about 9:00, so they had a long day of bm aspiration, blood work, and I don't know what all. While he was sedated, they changed the needle in port, changed his mickey button; he was glad all that was done while he was sleeping.
Donna and Jeff don't eat either while Nicholas has to fast, so Donna had a severe headache last night; I suppose partly because of no food, but mostly from stress.
Please remember them in your prayers for strength and safe travel. There was a 3" snow on and they were supposed to travel back to hotel in KY, about 15 min. away. Also, they will be traveling back home tomorrow.
Thanks for all your concern and prayers,
Sissy Bear.
ps. Spencer is staying with me; he is missing them, but is doing well.

Wednesday, January 19, 2005 7:08 AM CST

Day 178 Oxandrolone Trial

Good Morning,

Everything was booked in Cincy at our normal stomping grounds and we had to get a room about 10 miles out! I'm sure we could have found something closer but we really aren't far away. Nicholas was devastated! He couldn't understand why we weren't staying in Cincy! He keeps on asking the name of the place where we are staying, over and over. I can tell he is forgeting other facts too. He will try to tell me something and forgets the name of things. I've noticed it alot this week. It is so scary.
Heartbreaking! I hate FA and cancer and all sickness.

New cup!!!! I was going through their stuffed animals, trying to get rid of some!!! Yeah, right!!! Every time I'd pick one up, they wanted to keep it and would start playing with it. They left the room and I managed to get rid of some!!!! Ronald McDonald House, here we come!!!
Nicholas would say, "This one isn't fuzzy!" He knows he cannot have the fuzzy ones! Some were smooth or cloth! He is too smart!!!

Please be praying for our miracle. Thanks Khalita, I know everything is up to God and it is all in His hands. That is where my miracle is coming from!!!!! Pray for our patience!

Pray for all the people taking treatments, for courage to fight and the wisdom to know when to let go.

I was praying for some pain relief this morning and then stopped in the middle of it and just asked God to give all of whatever He had in store for me to Nicholas. I would joyously endure all of his pain if it were possible. Why can't I trade places?

Blessings,
Donna

Tuesday, January 18, 2005 7:33 AM CST

Day 177 Oxandrolone Trial.
Day 180 will be 6 months!!!!!!

Hello,

If you came back here yesterday evening, then you know Nicholas platelets were up but the rest of his counts were down. They were: anc=160 :(, platelets are 52k transfused!
hgb down to 7.8!
mom and dad's spirits= together may be a 1!!!

Mamaw and Papaw came to see the boys yesterday evening. I was telling Mamaw that if they find an abundant amount of CD-34 cells, then we may do the gene therapy. Nicholas asked, "What did you say Mom?" I knew I was in trouble then!! He had heard me and then the questions began. I told him what I had said and he asked, "Where do they find those cells?" "Do they have to stick my port?" I told him no, that he was already accessed. I hope they can change the needle while he is still under for the bm aspirate! "How do they get them out? Do they have to put me to sleep?" Yes. Then he started puckering up and saying that he didn't want to be put to sleep. I told him that Dr Harris had to look at his bone marrow to see what kind of medicine to give him. I then pretended to be Dr Harris and was writing down the facts as I found them! Bone Marrow, Check! Platelets, Check! Red Cells, Check! Now what kind of medicine do we need to boost those platelets and red cells, hummmmmmm, Oh this one will work!!!!! This got him tickled and turned the tide!! I looked at Mamaw and she was about to burst out crying. Thankfully, when he started smiling, so did she. Mom finally began to breathe!!!
Sissy and Daddy Bear came up and played hide-n-seek for a while and Nicholas was short of breath again. He was pale and sort of pasty looking. I can tell his counts are going down just by watching his color.

Talking about breaking my heart, it is. Watching him go down hill and then someone else will say, "He is so pale!" in front of him! I cringe inside! Sometimes, I want to scream, "He has ears!! and feelings!!!" Everytime we have to explain what is happening, the wind is knocked out of my sails. It is hard to be strong for everyone. Especially for Nicholas and Spencer, but I have to be strong for them.
We gathered around the bed and had prayer last night. Spencer reached over and kissed Nicholas' foot. So sweet! Broke my heart! Then he patted my hand and kissed it. He senses that something is happening and is trying to process it. He prays for Nicholas. Thursday, when Anita came to change Nicholas' needle, Spencer knelt down at the hall tree. Mary thought he was playing with a car but later, he popped in the bedroom and asked, "Brother, are you ok?" "Mary, did you see me praying at the hall tree?" Precious, the love of a brother.

Remember Diane Keel, Ed, and Racquell Werbe, Diane's cancer is back and they need our prayers. What a fighter she is! She is an inspiration to all of us to keep moving FORWARD, no matter what the circumstances are, just keep going!!!! Pray for grace, mercy, and wisdom for her doctors and all the family, all the TEAM!! Life is a TEAM sport, the slogan on Hendricks Motor Sports, wrist bands for bone marrow awareness!!!!! It is definitely a TEAM effort, especially the CB team!!! Thanks for all the guestbook entries here too. You are a part of our Team and we couldn't make it without you!!

Hug them tight and let them know you love them,
Donna

Monday, January 17, 2005 6:59 AM CST

anc=160 :(
platelets are 52k transfused!
hgb down to 7.8!
mom and dad's spirits= together may be a 1!!!


Day 176 Oxandrolone Trial

Hello,

We've have a very busy weekend. Mamaw Boggs and Aunt Cathy came over yesterday and the boys played and played with them. Popcorn and banna splits were the party foods and crawling through the tent was the highlight, well, Aunt Cathy getting stuck in the tent was!!!! Nicholas butted her with his head to help her through!!!! He is too funny. Spencer giggling all the way!! They were hilarious.

Nicholas cannot play for long at a time without breathing real loud and fast. We had to make him sit down a couple of times to rest. He hasn't coughed up any more blood though. He has been feeling good and playing in spurts. He keeps saying, "I'm so tired!"

We were saying our prayers and prayed for Uncle Ronald who is in the hopsital and Nicholas said, "That woman with the race truck, what is her name?" I told him Racquell and he said, "And Diane, she isn't feeling good either." Sorry Ed, he didn't mention you! We have been praying for you all all weekend and I requested prayer from others too. Hope you all are having a better day today. All things are possible with God.

Remember us as we go to Cincinnati this week. Nicholas gets so scared and panics when a nurse goes near him. Remember all the children and adults taking treatments and for the families for guidance, wisdom, and patience.

God Bless,
Donna

Friday, January 14, 2005 12:28 AM CST

Day 173 Oxandrolone Trial

Hello,

A transfusion of confusion once again!!! Yesterday, we waited and waited, it was after 8:30 pm before they even started and we were there around 4:15!!! Someone dropped the ball!!! Nurses didn't have orders, platelets were there and waiting. I was so mad, I would have walked if he didn't need the platelets. We finally got the platelets transfused and arrived home around 11:30 pm last night!!! Nicholas wanted mashed potatoes and ham!! Guess what he was doing around midnight!! Yes, eating mashed potatoes and ham!!! Dad and Bubbie were asleep but Dad woke up when we came home. He had just dosed off to sleep and Nicholas tried to climb on the bed to get some sugar!! What a night!! That will never happen again. I promise!!! Chaos! Total Chaos!!!

Nicholas is still coughing up pink tinged sputem and is breathing a little fast. He appears to be ok but I'm not sure what is going on with his lungs. His secretions are very thick and dark sometimes with bright red specks of blood. Sorry to be so descriptive but that is just the
facts!

I'm drained today but in survival mode!! I'm fortified with a couple cups of coffee and still barely keeping my eyes open!! Sitter is off today and I'm home with my precious babies. They are so sweet. Ms Libbey brought a bunch of stuff to play with by the hospital last night which included wooden snakes and that is all they have played with this morning. They are something else! I found out later that Nicholas had asked her to come. He is getting good at begging that is for sure or Libbey is easily persuaded!!! Honestly? A little of both!!!

The speech therapist is here and they are playing a game of "Guess Who!" She is trying to explain the rules!!! Good Luck, Ms Davina!!! The rules will be modified that is for sure!!! I'll try to join in a moment!!! I want to play too!!!!! It helps to be a big kid sometimes!!!

Now, Nicholas' counts should be good for the trip to Cincy next week. I would like for him to have is port needle and his mic-key button changed while he is asleep for the bone marrow aspiration. He will think that is so cool!!! God Bless his little heart! He still looks pasty this morning but not as dark around eyes and mouth. He has been playing and laughing all morning. They are a hoot!

Thanks to whoever gave platelets on 1/10/05!! Our heartfelt thanks for your dedication, platelets, and time it took for you to donate. Thanks for the gift of life.

Remember all the children taking treatments and their families, for hope and patience.

Blessings,
Donna

Thursday, January 13, 2005 7:02 AM CST

*** Going for transfusion but not sure when. Please call the above number and schedule an appointment to give platelets if you are able. Thanks.

**Nicholas hasn't coughed any more but his platelets are down to 12, hgb is 8.3 and his anc is 1987. Overall, his counts are the lowest they have been this year except for the platelets.
I still don't know about transfusion yet.


*Nicholas is coughing up bright red blood! We will probably be going for a transfusion......stay tuned. :(

Day 172 Oxandrolone Trial

Hello,

Nicholas has his needle changed today in his port. Please remember him in your prayers. Pray for good cbc results too. He had a great day yesterday and told his teacher that he was terrific!! He was feeling so good. After school, he immediately called Sissy and Daddy Bear for him to bring up his banjo! He was thrilled and played and played on it. He actually rubbed a blister on his pinky in just a short time but he had a ball doing it!!! We found something for him to use as we didn't have any picks. Talking about jamming!! Spencer and Sissy Bear went to town! I captured it on video!!!! Can you tell we are all monkeys!!? Especially, when it comes to the boys!!!

Nicholas wore his red boots yesterday and had to put them on to show Sissy Bear too! He stepped back on Spencer's toe and Spencer fussed at him. Nicholas said, "Spencer, Don't you know I don't have eyes in the back of my head?????" Sissy and Daddy Bear cracked up and I could here Spencer giggling! They are so funny!

I will not be worth a hoot today until I get those results!!! I don't really have a bad feeling about them today for some strange reason. Maybe, just maybe, he won't have to go for a platelet transfusion. Or I'm numb. Too much happening in too short of a time span. It is hard to process all the feelings, emotions, and the realization that we may be out of options for Nicholas at the same time. Besides the fact that I had surgery too. I don't know why I'd be so bogged down!!! I know, God makes a way and I'll keep trusting in Him. That is how we are making it!

Now you know why I've signed this years motto as "Strive to stay alive in 2005!!!!
Donna

Wednesday, January 12, 2005 6:51 AM CST

Day 171 Oxandrolone Trial

Hello,

I predicted that Dr. H would put Nicholas back on an antibiotic and guess what?? He did!! He is now on Clindamycin through his port for 7 days. The local folks said it was through his g-tube. I had to make several calls to get that straightened out. I knew it should be though his port!! I know what Dr H is doing, keeping him on antibiotics until we get there next week. Nicholas has a lot of appointments in two days. He will get another bone marrow aspiration and a possible ct scan of his head for the little episodes that he has been having. I feel his hydrocephalus is getting worse but not causing seisures, I don't think anyway. His shunt hasn't worked in 3 years. I just pray they don't have to replace it soon unless of course the fluid is putting pressure on his brain, then it would have to be replaced. He is definitely dropping platelets and getting more pale every day. Did I mention that I dread tomorrow's counts!!!?

I have photos of the boys putting on their shoes they got for Christmas! His red boots were a huge success!! He thinks he is IT, THE COWBOY! Spencer loves his Thomas tennis shoes too! He had to go put on his boots too and posed and posed!! I'll try to post some photos today if I can. They are gorgeous! and some are hilarious!!! All are precious! Nicholas told Sissy Bear, "They are red as red can be!" Sissy Bear told him she would wear her red boots and they could dance! I told them they could do the boot scooting boogie! Look out Lyons Fork, our house will be shaking!!!

Kim's hubby Sammy called me and said that Kim was in lots of pain. She had one disk that was badly ruptured! She may get to come home today. Please remember her in your prayers.

Remember the Fecteau family from Canada, their daugher Charlotte passed away last week. She had FA and suffered many complications from the BMT. She is now a beautiful angel.

Remember all the children taking treatments. Remember all the families, it is a struggle every day dealing with sickness, heart break, and the emotional roller coaster ride. The last time Nicholas has a transfusion, it zapped me! I was forever regaining my strength back. Thanks for all who have been there for me, you will never know how important a positive attitude is when you need one!!!

Strive to stay alive in 2005!
Donna

Tuesday, January 11, 2005 7:12 AM CST

Day 170 Oxandrolone Trial

Hello,

Here is an example of how sensitive Nicholas is. He spoke to Diane Keel on the phone and knew immediately she wasn't feeling well. He said, "You sound funny, what's the matter?" I told him I bet she thinks he talks long and slow!!! and that got his mind off of her!!! It was great talking to her and Racquell. Nicholas'eyes just sparkeled when she mentioned riding in the race truck!!! He loved that idea!! He got so excited when I told him they may come to see us or we would meet somewhere when the Werbe Team goes to NC!!! Maybe it will turn into a CaringBridge Picnic like Eva said!!!! That would be great!

Yesterday was a pretty good day, he felt some better and was laughing and playing for the most of the day. It's times like that that make you forget the bad stuff. Nicholas did well in school yesterday evening too. He is reading more and more and impoving some too. I don't think anyone is pushing him at the moment! I don't know how he feels like concentrating anyway. He is amazing and just doesn't stop trying. He is definitely a fighter and has a lot of fight left in him!

Aunt Cathy brought them a Brit Lite Cube and they loved it!!! I printed off some photos for her and she fell in love with my printer!!! Now she wants one!!!

I am ordering some Wrist Bands to sell. They will be pink, red, and white with www.fanconi.org written on them. If you want one, just let me know. I'll post the price when they come in. Thanks to Krisstina and the Joy Team for getting this on the roll!

Remember all the children taking treatments in your prayers. Remember Kim Belcher, she is having back surgery today. Nicholas told her he would pray for her! We left her a photo that Nicholas autographed at her home this morning. Be sure to get it Kim!!!

Need God? Ask Him!
Don't need God, Thank Him!
Donna

Monday, January 10, 2005 6:58 AM CST

Day 169 Oxandrolone Trial

Hello,

We had a wonderful weekend until the home health nurse called and said that Nicholas' port culture came back positive with staph, the kind that is common on the skin. It takes a high powered antibiotic, Vancromycin to kill it and Nicholas had an allergic reaction to it. We had to take him in yesterday for a foot stick for blood cultures and cbc. He cried so pitiful that it broke my heart. He had only one stick but that was enough. As soon as it was overwith, he was all smiles and we went for ice cream. He actually took a couple of licks off Dad's cone. He said, "This is the greatest day ever!" He is definitely a super hero!

His platelets have fallen to 28k from 61k on Thursday. Hgb was 9.6 and his anc was 1380 I believe. I don't have them in front of me and trying to do it from memory! I'll change them later if I'm wrong. I dread to see what this Thursdays are going to be.

If we don't get the correct medicine in him to help his bone marrow to produce more cells, then we are in trouble. If God doesn't heal my baby, there is no hope for him. How long can he live being transfusion dependent? If anyone knows, please email me. I know as long as God wants him to live and until the transfusions do not make his counts any higher. That is scary, scary, scary. All Nicholas wants is for March, Spring, warm weather to get here so he can go outside and play. I pray he gets his chance to ride the Gator!

Keep praying for all the children taking treatments.
If you need something, Call on God
If not, Thank God.
Donna

Friday, January 7, 2005 6:37 AM CST

Day 166 Oxandrolone Trial

Hello,

Nicholas bloodwork came back with platelets 68k, hgb 8.6, hct 24.7 and rbc 2.41. I'm not sure what his anc is yet. All of it wasn't back by the time I left here yesterday evening. Overall, he has held on to the platelets a little longer this time and the other counts had dropped a little bit. I think.....who knows what I think! I forgot what I was going to type!!! Of course, I'm not brain dead, you have to have a brain first!!!

Can you tell by the above photo that Nicholas has lost weight? The little boy on the left holding Spencer is six years old too! It breaks my heart to see how different he looks with just a 5 lb drop. His jeans are so baggy and they were getting too tight around his thighs, not now! I hope he can gain some back soon. You can bet your breeches, I'm trying! He has been pulling one over on us, wanting off the feeder, he just has to use the bathroom!!! Yeah, right! He has picked up this term and uses it all the time now!! It's so cute. Mom's to blame for that one!

I found a Thomas Fix-It Station at Wal-Mart and Spencer played with it the rest of the evening. It was so cute with a little air compressor that moves various tools which are used to wash and repair Thomas the Train Engine! He didn't even participate in anything Mamaw and Papaw did until Papaw got in the floor to wrestle! Then, he was back and forth. He absolutely loved it!!! I know, I know, he needed another toy!!!

Nicholas called Kimmy Bear to see how she was feeling. She was moving some boxes and injured her back. She may be going to surgery on Monday!! Pray for her! She had been asleep and when she spoke, Nicholas asked, "What's wrong?" immediately. He is so sensitive! She probably doesn't even remember talking to him!!! He told her that he would pray for her. How precious is that?

Pray for Kimmy Bear, and all the others taking treatments of some type. There are so many that need your prayers.

Thanks to the donor who gave platelets. If you are O and would like to be a single donor for platelets, this is the type Nicholas needs, call 423-224-5888 to make an appointment. It takes a couple of hours to harvest the platelets. If you are not O , go give so some other child can live. Thank you.

Blessings to you,
Donna

P.S. Susan, I'm sorry I had to take the graphic off your guestbook enty, it was hanging up the site. I printed it off to show Nicholas! It was so cute. I copied/pasted back the message. I hope I didn't mess up too badly!! Thanks for being there for me and answering my mulitude of questions!!

Thursday, January 6, 2005 6:36 AM CST

*One stick reaccessed the port and no other blood work!!! PTL! I'll post when I have some counts.


Day 165 Oxandrolone Trial

Hello,

Nicholas and Spencer were thrilled to the max when they saw Damon and his family there to visit! Spencer said, "There comes Dad in his grey truck!" Nicholas said, "That's not Dad!" Spencer said, "It may be Damon!" About that time Damon popped his head out of the truck and Nicholas screamed, "DAMON!" He loves Damon! He kept on screaming his name! Jacob, Ben, Abram, Amanda, Mamaw, Papaw, and Damon came up and ate with us and the boys were so happy. Spencer kept after Jacob! I had to scold him several times for hitting him! He was excited and couldn't be still and was a little too rough! Jacob, bless his little heart is 9 and just let them wool him good! It was so precious. Nicholas couldn't play hard without breathing too hard and fast and had to continually sit and rest. It didn't matter as long as DAMON was holding him!!! He had Damon in the Spiderman tent!! Damon is about 6-5!!!! Yes, his long legs stuck out of the tent!! I should have snapped a photo!! I did get one of the boys together that is just precious. I'll try to add it to the home page later.

Nicholas does get bloodwork today, port and foot sticks too. I dread it for him and pray it's not too bad. Hopefully, Anita will get it on the first stick. Pray for them.

They are going to do a bone marrow aspirate when we go to Cincy later this month. I cannot believe they even think they are going to find any cd-34 cells, those are what is needed for gene therapy. He only had 10 percent of what they needed in April, 04! His counts are lower now! It doesn't take a rocket scientist to figure this stuff out!!! Common sense can easily do the job for the most part!!

I honestly don't know if we are going to continue the Oxandrolone or not. Six months is a good try in my opinion and we have not gotten the results that we wanted, as in higher platelet and rbc counts. I just pray there is another medicine available that will do the job. If not, we may be without an option. No hope for help. I know God can heal but He may have other plans. Pray that we can accept His plans whatever they are, with Grace and peace.

I pray for inspiration, strength and courage,
Donna

Wednesday, January 5, 2005 6:32 AM CST

Day 164 Oxandrolone Trial

Hello,

It seems that the nurse didn't take one of the ends off Nicholas' line when she drew the blood cultures which could result in a contaminated culture! I hope and pray that is what happened. They are doing repeat cultures tomorrow!

Nicholas was feeling lots better yesterday evening. I set up their Spiderman tent and they had a ball. I laughed and laughed at them playing. I took pictures!!! They loved it and guess who slept in it last night? Spencer had to have in in his room and he slept in the floor. I put pillows down first! He thought he was something. I just couldn't get enough sugar yesterday evening. He had missed me too!

Nicholas sounded dry when he was breathing and I put him back on moisture and gave him a treatment. It didn't take long before he coughed up some really junky gunk. Then I could hear something still in his trach that he couldn't get out. I had to deep suction him! That was a first in a long time. He was scared but I talked him through it and suctioned out a huge plug! It would even go into the tube with water! Nicholas' couldn't believe it! He said, "Wow! I didn't know that was in there Mom!" Sorry, I don't mean to be gross but this is an every day thing with us! He sounded better but coughed throughout the night. I think he needs to stay on his moisture a little longer or during the day some. He is getting his antibiotics now once a day and I'm not up every 6 hrs. Thank the Lord! I was still up with him suctioning during the night, venting his tummy, and checking his temp. He was running a low grade of 99.6* when we went to bed but he cooled off during the night.

I had my staples taken out on Monday and Nicholas told me last night that he would pray for my tummy to get better! He is so sweet. He told Mamaw the other day that he would pray for her arm where she had burned it. When we left the hospital, Nicholas asked, "Mom, do you know who is with us?" Who? He said, "God is with us!" Debbie, the nurse, said, "Some one is teaching him right!" He told Mary the other day that he missed his father! She asked him if he meant his Dad and he said, "No, God, my Heavenly Father!" Sometime we have no words to say and just listen.

Sissy Bear went to give blood but her's was too low to give! It broke her heart and she cried all the way home. She told them that she wanted to give for Nicholas and the lady told her that Nicholas had brought out a lot of donors!!! That thrilled my heart. I know how she feels, I cried when I realized I couldn't give any for a while because of surgery. A BIG thank you to all who gave on Nicholas' behalf.

Baby Eddie received great news! There wasn't any evidence in his heart that anything had been wrong! God is good!

Remember all the children and adults taking treatments. Remember those parents with empty arms too. Remember my baby.

Congratulations to David and Michelle Altizer on the birth of their baby girl, McKenzie Jade! Now, Tanner and Ethan have a new baby to play with!!!

Thanks again to all who gave blood,
Donna

Tuesday, January 4, 2005 7:03 AM CST

**The Vicious cycle has begun again. His port cultures are positive for "gram cocci", not identified as of yet. That means antibiotics, which means diarrhea, which means dehydration, which means....
see what I mean. How much of this can my baby stand? Pray for him, please.


Day 163 Oxandrolone Trail

Hello,

We went to the dr office and let him check Nicholas. Nicholas was feeling pretty good and loved and kissed on Dr B. Dr Begley said, "Nicholas, I believe you know how to get to a man don't you!" Nicholas said, "Dr. Begley?" Yes. "I love you!" Dr B told him he loved him too. This is how it usually goes when Nicholas is feeling half way decent. We got to the hospital for chest x-ray, blood cultures, and a dose of Rocephin and then we had to wait over two hours until the platlets got there. I gave Nicholas his dose of Benedryl and Tylenol before the transfusion. Nicholas jumped and said, "Mom, where am I?" He looked so scared and he was frantic. I calmed him down and am still trying to figure out what exactly happened. He did it again a little later. It broke my heart and the nurses just stopped whatever they were doing and just watched him for a while. It was scary. The Benedryl makes him real grumpy and he wasn't in the best of moods when we arrived home at 9:30pm. Spencer was in major hyper form! He was bouncing off the walls and Nicholas wasn't the least impressed! He was totally mad at Spencer for making too much noise while he was trying to talk to Sissy Bear. He pouted and pouted! Dad talked to him and he told me, "I'm just going to ignore Spencer!"

I'm totally washed out this morning and overslept! I feel achy all over and cannot even imagine what Nicholas feels like with platelets down to 7k! I checked him through out the night for fever but he didn't have one. He coughed up a lot of junk. I hope and pray he has a much better day today.

Pray for Baby Eddie, the baby with a hole in its heart. Pray for Kylejae's family, they are having one tradgy after another in their family besides the flu!! Pray for Heather that she gets some much needed sleep. Pray for my baby too. Pray for Kayla Lackey's Dad, Bill who is having a stint put in today.

Thanks for all the prayer yesterday, for all the guest book entries and the encouragement. You all are the best! Thanks for being there for us. Give your children a big bear hug!

Thankful for another day,
Donna

Monday, January 3, 2005 7:01 AM CST

**Platelets are 7, yes 7, we are going for transfusion, blood cultures, antibiotics, and dr visit!! Pray for my baby.


Day 162 Oxandrolone Trial

Hello,

Saturday, Nicholas ran a temp of 101.6 most of the day. He started the New Year off with feeling bad and drooping around all day. I was droopy too but we have survived. I think my motto for this year is.....Strive to stay Alive in 2005!!!!

Yesterday, he felt better and was back to his little loving self. Kissing everyone that crossed his path and just being his normal little angel self. I love it when he feels good. He looks real bad, pale but dark around his eyes and mouth. It is breaking my heart in two watching his decline. We have a very somber household as of now. New Year's was just another day. The only highlights are when the boys are laughing and playing. Sweet, sweet music to my ears. Spencer was trying to take the tires off the Gator! They are too cute with all the tools banging here and there! I get so tickled at them. Nicholas and Spencer are still playing with the stuffed snakes they bought at the petting zoo in July! They loved them and now are putting them in the Gator and taking them for rides! Hilarious!

I have taken a load of photos! I'll have to post them asap! The boys have said so many cute things that I can't remember all of them. I have enjoyed being home with my babies! Nicholas keeps asking when Spring is getting here. He knows it gets warmer and wants to take the Gator and Tractor outside! He keeps asking! I pray they get to enjoy them as much as they can. Uncle Kenny has a new foal that is simply adorable. I can't wait for the boys to see it.

I'm sorry my mind is hopping and jumping but Nicholas gets bloodwork today and had to fast for five hours! I am worried about him and know his platelets are going to be down again. How long can he hold on with his counts so low? How long can he be transfusion dependant? His body will get use to the transfusions and will get to the point that they won't work anymore. I'm still praying for a miracle. We are in desperate need of one or more!

Remember Lakshmi Amulya's family, she passed away on the 29th from complications of the BMT for FA. Pray for all the families taking treatments of some type. Pray for Nicholas.

Strive to stay alive in 2005,
Donna


Another prayer request:

I have an URGENT prayer request for you all. One of my cousins on Kent's side of the family has a nephew who is about 6 months old named Eddie. Tonight they found out that he has a hole in his heart and that the heart is so enlarged that it is pressing on his little lungs and so they cannot function properly. He is being sent to a children's hospital tomorrow. They don't know if they can get his lungs working properly. My pastor and Kent and I prayed together for this little baby and I need you all to stand in prayer with me also. This is a SERIOUS situation. Little Eddie needs a miracle. Pray. Pray. Pray. Please.

Love in Christ,
Marsha

Thursday, December 30, 2004 6:49 AM CST

Day 158 of Oxandrolone Trial

Good Morning,

I went home to two happy to see mommy boys. "Hi Mommy, I missed you!" were the sweet Spencer words that greeted me.
Nicholas was getting a breathing treatment and was feeling a little droopy. It is no wonder with him trotting to the bathroom all day. He was a little on the "Spencer is getting on my nerves!" mode, which means he isn't feeling well. I couldn't lift him so he slid off the bed and we went into the living room to play with Legos!

Nicholas wants to use the phone all the time now that he can dial Mamaw, Sissy Bear, and Kim all by himself. He loves that phone! He called Sissy Bear and asked them to come up. He told Daddy Bear, "I miss you!" Yes, you guess it, here they came. Who wouldn't after that!!!! They played Hide n Seek and Nicholas had to take a break, then it was Lego time again. Nicholas was crawling around on top of the Legos and I know he will be bruised to high Heavens!

Nicholas has blood work today and was suppose to be fasting for five hours but guess who didn't wake up at all last night!!! I slept like a log and so did everyone else! I figured Spencer would have nightmares from watching Dad change the dressing on my surgery sight! He just had to watch and then he would pet my head and say, "Poor Mommy!" "It will be all right, Little One!" "It will feel brand new in a minute!" Nicholas had to have his glasses on so he could see my stitches! They weren't stitches they were staples, six of them! He was straining his little eyes out trying to see! I thought Spencer was going to turn green but he didn't and came back to watch again! He is something else! Dad was so patient with him and explained every thing he was doing. I think that helped him not to be scared. He wanted to know exactly what Dad was doing. He is too cute!

Remember all the children taking treatments and the adults too. Remember to hug'em tight and let them know you love them.

I'll post the results when I get them.
God Bless you,
Donna

Wednesday, December 29, 2004 6:49 AM CST

*check out photos!

Day 157 Oxandrolone Trial

Hello,

I'm baaack! After a big scare and some minor surgery, I'm back in the saddle! Yes! I said me! Scar tissue from the c-sections was giving me some problems and I had to get it taken care of. They sent it for evaluation but I think its ok. Thank God Dad is there to help lift the boys or I couldn't make it!! He is definitely a handy man!!!! Ha! I love my jokes!! He is a carpenter by trade!

Now on to the main subject, His Highness is suffering from diarrhea again. I think it's a bug or the antibiotics he just finished up. His blood work came back with his platelets down to 49k (transfusion 12/23/04), hgb 8.9, and his ANC was 389! We are staying with the G-CSF three times a week instead of two. Thank goodness. He looks really pale and peaked. I wish Santa had a healing dose in his sack. I keep praying for a miracle. He will play for a while and then just lie down. They have enjoyed the Gator and the tractor so much even without batteries! I love to listen to them playing. It is music to this Mom's ears. Nicholas was singing to the top of his lungs the other day, "Don't ever loose sight of your goal!" I had the monitor on and it sounded so sweet and precious, I wish I'd taped it. One of those heart memories. One I did capture was him laughing at Spencer! He was so tickled he couldn't stop laughing. Oh the joy that radiates from his sweet little face. It's infectious! Spencer kept trying himself when he realized that Nicholas was laughing at him! It was too cute! They are so precious. Wonderful gifts for Christmas! I love my boys.

Remember all the children and adults taking treatments. Go give your babies a big hug and kiss, it doesn't matter how old they are! Let them know you love them. Don't take them for granted.

God's Blessings,
Donna

Monday, December 27, 2004 6:37 AM CST

Day 155 Oxandrolone Trial

Hello,

Where do I begin!? Overall, we were blessed beyond measure for Christmas. The boys had a wonderful time and do not want me to take the tree down.

I'll start with the 22nd, Wednesday was blood work and needle change day! His platelets had dropped to 11k and Dr. Harris wanted him to have a transfusion. I called and they said the platelets would be ready at 3:00 pm the next day! I couldn't believe my ears! The next day? What if it had been an emergency? To me it was! I was so hyped up and when she told me that all the air left the balloon and I was completely exhausted. On Thursday, I wasn't much better and could not function properly! I didn't have any energy nor coffee!! If it hadn't been for Sissy Bear, I wouldn't have made it through the day. She came up and loaded the blazer and took us to get the transfusion. Thanks Sis, you are the best! The platelets were not single donor and that worried me. They had finished going in and Nicholas started chilling and his temp went up to 99.9* but they let us go home. We were gone for 5 hrs total! We arrived home and his temp went to 101.6* but Tylenol took care of it! Santa also helped! Yes, Santa came to our house early to visit with the boys! He was just the greatest! The boys were thrilled! I couldn't believe Spencer! He just took up with him like he was part of the family. He climbed up in his lap and hugged him. Spencer has NEVER sat on Santa's lap before!! I do have photos!!! and video!

Friday, the boys opened their gifts and they have played and played and then played some more. They loved their Gator and Tractor that Santa brought. Dad asked Spencer if he was going to sleep in it and he asked, "Where is my pillow?" He would have. He did eat in it!!!! They both loved them and I can't wait until Spring so they can enjoy them outside. We didn't put the batteries in but they've had a ball with them. They also received Laser key chains from Mike and that is all they have played with since! They absolutely loved them! Thanks Mike, they loved them.

Saturday, everyone came to our house for Christmas! Yes, all of us turkeys were stuffed!! Good food, fellowship, and God's blessings, how much more do we need? It was wonderful. Mamaw and Papaw loved their footprints and handprints on the ceramic tiles!

Yesterday, Nicholas said he was hurting in his side "my hip", I patted his lung on that side but he wouldn't let me go very low. He said, "Ouch!" I know he has pneumonia in it. I pray the antibiotics work soon. He is still on them! He even gives to his left side when he walks. Please remember him in your prayers. I think they are doing blood work again today. I'll post when I find out the results.

Remember all the children and adults taking treatments.

God Bless you,
Donna

Tuesday, December 21, 2004 6:40 AM CST

Day 149 Oxandrolone Trial

Hello,

I have some good news!!! Pita and The Werbe Crew do the hat dance all over again! Nicholas is feeling much, much better! I think the worst is over with and he is on the mend. He is still sneezing and coughing some but overall looks and acts much better. I'm so thrilled. Spencer still sounds like he has some congestion in his chest but you can't tell anything is wrong with him! He is rotten! Thank the Lord they both are feeling better.

I hooked Nicholas up to one of his meds and checked on it a half an hour later when it should have been finished and guess what? I hadn't unclamped one of the clamps and his medicine hadn't even started!! Oh well! That's how it goes some days. It definitely got me off track with his others meds. He had to have two antibiotics, the g-csf, a breathing treatment, and his oxandrolone. Yes, I managed to get them all in before bedtime. One of the antibiotics runs for half an hour and one for an hour! Then, I have to give the hour one every six hours! That is going to be difficult when he is feeling better! Did I mention he has to stay on them for 2 more weeks!? Dr Harris from Cincinnati changed that one! I would be headed for Cincinnati if Nicholas had gotten any worse. I'm thankful to be home for Christmas!

Here is a poem I wrote the other day:

To:
Nicholas, who just got out of the hospital but isn’t bouncing back very fast.
Spencer, who has a cold and doesn’t feel well.


IT MEANS NOTHING
By Donna J. Boggs


Christmas is coming.
Gifts mean nothing if you aren’t feeling good.

Christmas presents wait to be wrapped…
It means nothing if you aren’t happy and well.

The tree is up and the decorations are hung…
It means nothing if you aren’t able to enjoy them.

I need to shop for Christmas…
Presents aren’t important, if you aren’t well.

I need to think….
But cannot when you aren’t feeling good.

I’m frustrated and want answers…
I look at you and realize what is important.

All the above are unimportant
You are, your hugs and your kisses.

Christ is why we celebrate Christmas,
He was born, buried, and rose again. Christmas will always be.

People including myself will always rush around the last minute and forget what is important , this too will always be.

I want you both feeling good, laughing, and playing.
My wants aren’t material.

Could Santa possibly bring me my wish?
I don’t think he has that power!

A healing Santa! What a picture that conjured up!
What would be in his healing bag for you?

Hair? New blood? No chemo? Remission? A happy home? A child? A husband?
Cures for FA?, ALL?, AA?, CML?, AML?, and all types of cancer and disease?

Only God can dish out those type of gifts,
Would we give Him the praise? The glory He deserves?

Why is it we glorify the man in a red suit but not the man with scars in His hands?
Why is it easier to believe in flying reindeer than Christ dying on a cross?

If all is well in your household and with your loved ones,
It will mean nothing if Christ isn’t in your Christmas.




Please have Christ in the center of your Christmas this year,
Merry Christmas,
The Boggs FAmily
Jeff, Donna, Nicholas, and Spencer

Thanks to all for the cards and gifts for the boys. They loved pulling all the goodies out of the boxes. Thanks Debbie for the ornament, it's hard to find Spencer's name on anything! Krisstina, I have another journal entry about the gift you sent to me, thank you so much. To the Werbe crew, I tried my best to claim the butterfly pillow for myself but Nicholas would not give it up!!!!! Thanks for everything. Spencer loved pulling out the candy canes! I loved the photo of Diane and Ed on the pillow idea! Good ideas!!!