History

Saturday, March 19, 2016 7:14 AM CDT

Today is Hannah's 6th Angel Day. It's hard to believe it's been 6 years without her. We still miss her everyday. But her spirit lives on and her story still inspires others. A big part of Hannah's Art from the Heart is sharing her story with the students who make the artwork, and then again with the people who buy the artwork.
During her short life, she impacted so many people, and she still is.

We miss and love you Hannah Bear.

Saturday, July 25, 2015 5:48 AM CDT

Today is Hannah's birthday.
She would be 13, a teenager.
She loved birthday parties, especially her own.

We Love and Miss you Hannah Bear.

Thursday, March 19, 2015 7:40 AM CDT

Today is Hannah's 5th Angel Birthday.
We will commemorate tomorrow with some friends for a beach sunset baloon release.

We all Love and Miss you very much Hannah Bear!

Friday, July 25, 2014 9:07 AM CDT

Happy Birthday Angel Hannah!
We Love you and Miss you still!

Wednesday, March 19, 2014 7:01 AM CDT

Today is Hannah's 4th Angel Birthday.
It is still so hard without her.
We still Love and miss you Hannah Bear.

Tuesday, November 5, 2013 6:51 PM CST

The Cheval Cares event in September was a great success! The event raised over $25,000 for Pediatric Cancer Foundation!!! There was a great turnout for the event on a beautiful day. I ran the 5K in 32min10sec, a little bit under my goal of 36min. We had a great display for Hannah's Art from the Heart, unfortunately, runners don't carry cash! So, we didn't sell a lot. But, we recently did 2 events over the past 2 weekends which raised over $1,300!!! My friend, Stacy, has done an amazing job in a true labor of love and is really starting to get a lot of support from the local school art teachers. We hope to continue to grow this project and raise enough money to fund one clinical trial with the Foundation.

Halloween passed quietly. Now, the rest of the holidays will soon be upon us. It is probably the hardest time of the year. I guess mostly because they bring back so many memories, which usually brings the tears. I wish I could fast forward right past the holidays. Unfortunately, now the times that used to bring so much joy, now bring sadness.

GrandmaD been in her new home for a couple of months now and is really enjoying it. She is feeling well with some occasional "senior moments" of forgetfulness.

Please remember to pray for the warriors that continue to fight every day.

Wednesday, September 11, 2013 5:54 PM CDT

September is Pediatric Cancer Awareness Month - please support your local charity.

In the Tampa area, on September 28th, there is a 5k run and family fun day with proceeds benefiting the Pediatric Cancer Foundation. "http://fastercure.org/special-events/cheval-cares-5k/" (copy & paste into your browser) . I will actually be running the 5k in Honor of Hannah. For those of you who know me, I am not known for running, but you also know I believe in this cause.

We will also be showcasing some artwork from Hannah's Art from the Heart at this event.

So, If you live in the Tampa area, please come out and join us.

Thursday, July 25, 2013 5:16 AM CDT

Happy 11th Birthday Hannah Bear!!!
I know there will be a beautiful party in Heaven today!!!

We still miss you so much.

Monday, June 17, 2013 6:19 AM CDT

Father's Day - it's one of the toughest days for me. When you don't have your child or your father anymore, not much to celebrate.

So, yesterday, Kathy & I went for a motorcycle ride to the beach for breakfast. That was about it for me. I just wanted to escape from the world.

Robby will be home for good in July. We still have Michael every other weekend and he is doing well. We are all looking forward to Robby coming home.

GrandmaD's house burned down in April. She was not hurt, but the house was a total loss. She is now in a new mobile home that she likes very much.

Please continue to pray for the little warriors that continue to fight.

Tuesday, March 19, 2013 7:08 AM CDT

Happy 3rd Angel Birthday Hannah Bear.
We still Love and Miss you so much!

Wednesday, February 27, 2013 8:46 AM CST

I realized it has been quite awhile since I last posted.

We have been quite busy. Kathy is studying very hard, working towards a Bachelors degree in Echocardiography. GrandmaD's house had a fire in January, she is ok. But the house had some damage. So, we have been working to get it repaired so she can move back in. Luckily, she has sons (not this one), who have the skills to do such work. I help out where I can. I my little bit of spare time, I like to get on my motorcycle and go for a ride. How I wish Hannah was here to go riding with me. She loved speed! I remember when she knew I wanted one, she would point out almost every motorcycle and say, "Daddy, do you like that one?" I have a little Angel bell on my bike, so she is riding with me.

Of course, March 19 is coming up, which makes for a very difficult time. I am flooded with the painful memories of her last few weeks. I try to also remember the good times, but am usually overwhelmed with sadness. I don't know if that will ever end. I just get better at hiding it. There is still such a hole in our lives.

On a more positive note, this past Saturday, there was a fundraising event by Hannah's school, Bayshore Christian. Her step-dad, Fred, has been working very hard to raise money to get a building named after Hannah. The school decided to name the building fund after her, so that all that is built will, in effect, have her name on it. I was unable to attend, but heard the event was a great success. Thanks to Fred for his efforts to keep Hannah's memory alive. Indeed, her Spirit lives on strong! Click HERE for a link to an article in the local paper with a very nice video of people at the school and their memories of Hannah.

Please continue to pray for all the little warriors who continue to fight and for the families, like ours, who lost their warrior to the Beast.

Sunday, December 23, 2012 9:38 AM CST

The Holidays are obviously a very difficult time for anyone who has suffered the loss of a loved one.
It will be especially difficult for those in CT that were recently struck by tragedy. Please remember those families in your prayers and the children and families who are still fighting cancer everyday, even through the holidays.

We wish all of you and your families a Merry Christmas.
Thank you for your continued prayers.

Tuesday, November 6, 2012 6:57 AM CST

Well, we made it past Halloween. We went to dinner and a movie.

I would like to again share that Hannah's spirit still inspires. My friend, Stacy, has put much effort into raising money for pediatric cancer research. She has formed Hannah's Art from the Heart. She is a 2nd grade teacher here in FL. She has spoke with art teachers in many of the schools in her area, and they have helped by donating different types of artwork (paintings, pottery, note cards) which she sells for donations and then donates the money to the Pediatric Cancer Foundation in Hannah's Honor. I was priveledged to be part of such an event a couple of weeks ago where Stacy's hard work raised over $400!!! She has lots of ideas to get bigger and raise more money. Thanks Stacy - Love Ya!

Please support pediatric cancer research, it's the only way to find a cure. Donate, write your congressman, tell your friends. Although we lost Hannah's battle, thousands of kids are still fighting, EVERY day! They are just kids, and they are brave and courageous, but they need our help.

Thank you for your continued prayers and support.

Tuesday, October 30, 2012 8:31 PM CDT

I know it has been a bit since I last posted. Not even sure how many are still stopping by.

Halloween is here. It was one of Hannah's favorite times of the year...in addition to her birthday, and Christmas. She loved the dress up part...not so much the scary part. Her last Halloween, she was Super Girl, I was Super Man, and Rocky was Wonder Dog. It was a tough nite for her, it was pretty warm for October and by then her breathing was becoming more labored. But it was also a good nite as I saw many smiles on her face!

Next will be the holidays. And they have been pretty tough. I'm sure this year will be no exception.

Please continue to pray for ALL the little warriors still fighting every day...they still need our help!

Wednesday, July 25, 2012 0:13 AM CDT

Happy 10th Birthday to our Princess!!!
I'm sure the birthday parties in Heaven are wonderful.
We miss you and love you terribly.

Sunday, June 17, 2012 6:49 AM CDT

It's Father's Day - yet another time that is very difficult and empty.

Friday, May 18, 2012 6:40 AM CDT

Well, here we are in the middle of May. Not much new to report.

We are coming up on 1 year since we moved into the new house. We've pretty much settled in. We just re-did the spare bath in preparation for Robby coming home. He will be here on May 22nd, for 3 weeks of leave. We are very excited to have him back home safely. He will still have a little more than a year left in Alaska. His son, Michael, is doing well. He has been taking swimming lessons. Since we have a pool, we wanted him to be able to swim, especially with summer coming up. He did quite well. It reminded me of when Hannah was taking swimming lessons. She was always so excited at the lessons. She was my little mermaid.

Each day still holds lots of memories of Hannah. I am contstantly reminded of her in most everything I see & do. Some of the pain has subsided, but it is still very near the surface. The other day, I was working, and her Hannah Montana song came on the radio. I started to well up with tears, and had to leave the room. Sometimes, it's the little things that just hit you out of the blue.

I say Good Morning and Good Nite to her every day and ask her where she's flying that day. And sometimes I talk to her through the day, when I see something she would have liked. I wish I would dream of her more often, but for some reason, I rarely do. Even though I ask her to come "visit" me in my dreams. Maybe it's some kind of protection mechanism in my brain, who knows. I still feel very isolated and lost. When you're entire life's focus was on one person and one goal, and that's gone....it's taking me a little bit to get re-focused. Someimes, it seems as though my life now really has no purpose. In time, I hope to find a new one. I would like to become more active in the crusade, but it is too dificult now. To raw. Before, Hannah was a sign of hope. Now, she is another precious one taken from us by the beast.

Please continue to pray for all the little warriors that are fighting for their lives and for all the big warriors fighting for our freedom.

Wednesday, March 28, 2012 9:42 PM CDT

UPDATE: Robby is safely back from Afghanistan!!! He arrived back in Alaska this past Monday. And he will be back home in Florida in May for a months leave! We are all so very happy for his safe return.

Well, we made it through the 2nd year without our Hannah.

On the 19th, Kathy and I took a motorcycle ride down to the beach where we spread her ashes 2 years ago. We released 2 balloons, one pink & one purple. Then we watched the sunset. We talked of Hannah, how she loved the beach and feeding the seagulls, how she loved being "fashionable", how she had amazing inner strength, how we missed her so. I still don't know how I'm supposed to "recognize" these type of dates. We just tried to do some things Hannah liked.

My friend Stacy, who started Hannah's Art from the Heart, had another event and raised $530 for the Pediatric Cancer Foundation. The event had mostly art teachers and students from her school district. The event raised alot of interest. It was even posted on the school boards website. She hopes to continue to get more teachers involved with providing art for the cause and raising more money for research. Thanks Stacy & Marny!

Kathy's son, Robby, is still in Afghanistan. He is scheduled to come back to Alaska on April 15th. His stay was extended a couple of weeks. He seems to be doing pretty well, considering he is in "hell". Please pray for his safe return, and for all the troops to come home safely. Robby has said that he has often thought of Hannah's strength during difficult times and that it has always strengthened him. That means so much to me. We ask Hannah everyday to keep watch over him and we can't wait till he is back home safely.

We are also enjoying watching Robby's son, Michael, growing up. He's 2yrs old now and is such a joy. Sometimes it is difficult to see him playing with Hannah's toys, watching him sleep in what should be Hannah's room. But he also brings sunshine into the home.

Otherwise, we are still just trying to get through each day. Always thinking of her, always missing her.

Please continue to pray for all the little warriors that are still fighting.

Monday, March 19, 2012 6:49 AM CDT

Two years ago today, Hannah became an Angel.
We still miss you and love you Hannah Bear!

Wednesday, February 1, 2012 10:06 AM CST

Well, the days continue to pass. And all of them are still dificult. I wonder if it ever gets easier. Each day is filled with reminders. Going through pictures and cards, usually brings tears. My life feels so empty without Hannah here. I try to remember that she is in such a wonderful place, with no docs or owies, but it still hurts so much that she's not here.

I've been going through old videos, getting them on disc so they don't degrade. Sometimes they bring smiles, but mostly tears. But I'm glad to have the memories on tape, to see her move and hear her laugh.

Soon it will be her 2nd Birthday in Heaven. It's already on my mind. In ways the time has gone so fast, and in other ways, it has been dragging.

Please remember to pray for all the little warriors fighting the beast. And for our real warriors, the troops, fighting for us.

Thursday, December 22, 2011 1:12 AM CST

Well, here we are...almost Christmas Day.
I have to admit, it's been very difficult to get into the holiday spirit. I'd say just as hard as last year. Hannah loved Christmas. She loved the decorations, and the lights, and of course, the presents. I remember driving around the different neighborhoods, looking at all the lights, and singing Christmas carols with her. She loved decorating the Christmas tree with all of her ornaments. She was always full of life, and that kicked into high gear during Christmas. Not having her here kinda sucks the life out of the season.

This year, we put up a Christmas tree for the first time since Hannah passed. We did it for our 2yr old grandson, Michael. It was very, very difficult for me. But he liked it. Wrapping presents isn't any fun when you're wrapping for everyone else's kid and not yours.

I doubt this feeling of loss ever goes away. But it's consuming and really changes what this time of year means. But I think it's Christmas every day for her now, that helps... a little.

Our Thanskgiving was wonderful. Robby was home from Afghanistan for a little over 2 weeks. We had a big Thanksgiving dinner, about 20 people. He enjoyed being home and it was hard to have to send him back. His deployment is over at the end of March, and he will return to Alaska.

Otherwise, we have been just settling into the new house. And although we are happy to have it, it just isn't the same without Hannah.

We wish all of you a wondrouse Christmas and Holiday season with family and friends.

Please continue to pray for all the little warriors that continue to fight, and many will be in the hospital for Christmas. And please pray for the safety of all our warrior troops that fight for us on the battlefield.

Thursday, October 27, 2011 9:11 AM CDT

Here we are, Halloween is this weekend. It's still been very difficult seeing all the costumes and thinking, "Hannah would have loved that". Of course, it happens daily, no matter what time of year it is. She is constantly on my mind. And the hole is still in my heart, and always will be.

A dear friend, Stacy, has been working very hard to start "Hannah's Art from the Heart". She is a school teacher and had the very cool idea that takes artwork from various students in her school and then sell the artwork to raise money for the Pediatric Cancer Foundation. Her first "event" is this weekend in Inverness, FL and we are hoping for great success!
UPDATE -- In it's very first event, Art from the Heart raised $250 at a weekend festival. We sold several pieces of art and had some donations. We also got to talk to alot of people and spread the word about the need for funding for pediatric cancer research. Thanks to the whole Griffin family, Marny, Lo and family too! Great job girls!

Robby is doing ok. He is still on schedule to come home in Novemeber and we're very excited. Please pray for our troops!

I know September is over and now it's Breast Cancer month, and you can't escape seeing it all over. I still can't figure out why we can't get the same exposure as they do. So, Please take this time to donate to one of the organizations that is working to find a cure. You know I fully support Pediatric Cancer Foundation and Children's Neuroblastoma Cancer Foundation. And you can make your donation in Hannah's Honor. And Please continue to support the little warriors and their families in prayer.

Tuesday, October 4, 2011 4:13 PM CDT

Well, it's the beginning of October and we actually had temps in the 60's this past weekend in Florida with lots of sun and blue skies. It felt really nice after the long hot summer. But it also means the holidays will be here soon. As you can imagine, not the happiest of times when you don't have your child with you to celebrate.

Hannah loved Halloween...mostly. She didn't like the scary stuff too much. But she loved the costume part and the candy part. I vividly remember her last Halloween. She was SuperGirl, I was SuperMan, and Rocky was WonderDog. Oh how she loved dressing Rocky up with the little cape that we made for him. I also remember that she had trouble breathing that nite, it was very hot for late October. And that I had to carry her for several blocks. But she had lots of smiles that nite. My, how I miss those smiles.

We are still getting settled in the new house. We have pictures of Hannah in every room. I think she would have liked the house. But there is still such a hole in the house and my heart. I'm sure that will never go away.

I recently finished reading "Heaven is for Real". It reinforced my belief that Hannah is watching us.

I will be going to California again in October and meeting with other Dad's who have lost their kid's to the beast. Again, it's not the best group to be in, but it's a good group of guys.

Robby has returned to his base from his mission. There were some fatalities and severe casualties in his platoon. So he saw some terrible things and lost some buddies. But he is in a much safer base now. He will be home in November for mid-deployment leave. We're looking very forward to his return.

I know September is over and now it's Breast Cancer month, which you can't escape. I still can't figure out why we can't get the same exposure as they do. I guess breasts are more valuable to us than kids. So, Please take this time to donate to one of the organizations that is working to find a cure. You know I fully support Pediatric Cancer Foundation and Children's Neuroblastoma Cancer Foundation. And you can make your donation in Hannah's Honor. And Please continue to support the little warriors and their families in prayer.

Wednesday, September 7, 2011 7:05 AM CDT

We hope you all enjoyed your Labor Day weekend with friends and family, and cookouts!

As you may remember, Labor Day marks the passing of my father in 2008, and my brother, Robby, in 2009. So it is a difficult weekend. But I know they are in Heaven with Hannah looking down on us.

As a bit of a distraction, we had some friends come down for the weekend and stay in the new house. We had about 10 adults, 3 kids, and 4 dogs, but it was all good. The kids had a great time swimming in the pool and we walked to a nearby playground. I know Hannah would have loved having a pool party at her new house. These kids knew Hannah and they miss her too. It was the start of college football season, so the adults watch the Gators play and had some good eatin'. I am so thankful for this group of friends. They have been so supportive over the past few years. Who would have thought after meeting in college 20+ years ago, we would still be friends, with families, and watching them grow. Thanks Krewe!

Kathy's son, Robby, in Afghanistan, is doing ok. But this week, he leaves on a 2 week hi-risk mission. We are certainly looking forward to his safe return for his mid-deployment leave in November. Please pray for his safety and for all the troops in harm's way.

In closing, September is National Pediatric Cancer Awareness month. Please take this time to donate to one of the organizations that is working to find a cure. You know I fully support Pediatric Cancer Foundation and Children's Neuroblastoma Cancer Foundation. And you can make your donation in Hannah's Honor. And Please continue to support the little warriors and their families in prayer.

Monday, August 15, 2011 10:55 PM CDT

Well, it has been a very, very busy past few weeks. But this past weekend, we moved all our stuff into the new house, which is still somewhat under renovations. Hopefully, that will be all finished by the end of this week. It has been very emotional leaving "Hannah's House", but as I've said before, Hannah was excited about moving to a new house, so I'm trying to be as well. But leaving that house, with the memories that were made there is difficult as well, as I feel it's kind of my last "link" to her. But regardless, we have moved..now we can focus on settling in.

This morning, I flew to California for training. Trying to pack, when you can't find half your clothes, made for an interesting morning, along with the contractor, the carpet guys, and the electrician all showing up about the same time. Anyway, once I arrived in California, I met up with Larry, another dad who had lost his child, Michael, to the beast. And we went to Paul's house, another dad who lost his child, Eden, to the beast and another dad, Neil, who lost his child, Sam, to the beast met us at the house. So, there we were... 4 dads who all had lost a child. But it was an enjoyable time. Paul, and his wife, Nina, have a very lovely home. And they have adopted a little boy from Russia, Tor. We played a little bit of hoops and had hamburgers. Because of our loss, we had an instant connection. But we didn't dwell on our losses and the years of agony. We talked of sports, and TV shows we watch, and work...kinda normal stuff. I wish we could have stayed all night, but being during the work week, we ended kind of early. It's not a club you want to be a member of, but it's also good to know you're not alone.

Kathy's son, Robby, is doing ok in Afghanistan. They are moving his base to a reportedly "better" area. We are hoping this means he won't be as exposed and will be able to use his Stryker training.

This past Sunday, we had a birthday party for Robby's son, Michael, who turned two. He is such a happy little boy. He likes trains, or as he says "choo choo", and Pooh and baseball. He is starting to talk a little bit now.

That's all for now...from the left coast.

Please continue to pray for all the little warriors and their families.

Wednesday, August 3, 2011 7:10 PM CDT

Well, we made it through Hannah's birthday..barely. It was another emotionally tough day. Kathy and I took the day off and kept ourselves busy with errands for the new house. That worked for awhile. And at the end of the day, we lit a candle in some ice cream, sang Happy Birthday (complete with tears) and released a Hannah Montana balloon. I really don't know what to do on these type of occasions. There is definetly no desire to celebrate. But I think it is important to acknowledge. And Hannah really loved her birthday. She turned 9 in Heaven. And I'm sure she had a great big party! I just wish I was there too.

We are preparing to move to the new house. This past Sunday, on the heels of her birthday, we had to pack up her room. I am so grateful to two great friends, Marny and Stacy, who came and were a tremendous help. It was very difficult and emotional. Not just because of all the memories made in that room, and not just because of all the memories that came to mind going through her things, but because that's all that's left...memories. One day, I hope they won't make me cry so much.

Please continue your prayers for all the little warriors that are still fighting.

Monday, July 25, 2011 5:26 AM CDT

Happy Birthday Hannah Bear!
We Love and Miss you so much.

Tuesday, July 12, 2011 9:01 PM CDT

Well, I did make it through Father's Day. As expected, it was very tough. We went to Kathy's brother's house for a BBQ. It was very low key, which was good.

But July is another difficult time, with Hannah's birthday coming up on the 25th. Oh how she loved her birthday! And the birthday party! I remember taking her to Bibbidy Bobbidy Boutique with some of her little friends. All dressed up as Princesses. She had a smile on the whole day. On her 5th birthday, we had a bowling/Litttle Pony party. That was a fun day. I always did my best to give her as much fun as I could, because so much of her life was not fun at all. But she always enjoyed every moment she could. She always had a strength that amazed me. She truly was a warrior inside that little body. She would have been 9yrs old this month. I'm sure she will be having the best party ever in Heaven.

Kathy and I closed on our house and have been busy painting and cleaning it up. And although it has been somewhat of a distraction, the fact that we are not painting a room for Hannah is very tough. As I've said before, Hannah was excited about a new house. And she will be there, in spirit. We already have her picture up, above the fireplace. She's watching us!

Robby is doing ok, but one of the boys in his platoon was seriously injured by an IED this week. He was taking Robby's place on guard duty. Obviously, this has affected Robby greatly. Please pray for this boy and his family.

I still miss Hannah every moment of every day and it still hurts so much. I doubt that ever goes away.

Thank you for your continued prayers.

Tuesday, June 14, 2011 8:19 AM CDT

Well, yet another holiday approaches that tears me up...Father's Day. It seems so empty now, with both Hannah and Pappy gone. I hope to fair better this year than last, but the fact that I've already been dreading it is not a good sign. I still stumble when people ask if I have any children. I think, "Yes, I have a daughter in Heaven" is about the best one possible. But God knows I'd like to be able to answer it differently. Please remember all the Warrior and Angel Dads this weekend.

Kathy is recovering very well from her procedure earlier this month. There are some occasional pangs of discomfort, but that's been about it. GrandmaD also had surgery, last week, to address her hip issue. They put in a constraint liner that will hopefully prevent any more dislocations. We'll just have to wait and see. Again, she has been wonderfully cared for by her friends, Bill & Dorothy, and her family. Please pray for her continued recovery.

We have been hearing from Robby pretty frequently. He is able to text a bit and we have been able to Skype with him too. It's good for Kathy to be able to see her boy, even when he's half way around the world. His ankle is healing, but still not 100%. He is doing some training this week away from the front, which is good. It looks like he will be coming home for a couple of weeks in November. Please pray for his safety and for our troops.

Well, I guess that's about all for now. Thank you for your continued thoughts and prayers. God Bless.

Thursday, May 26, 2011 2:01 PM CDT

I know it has been quite a while since I last updated.

Happy Belated Mother's Day to all you Mom's!!!
Unfortunately, I was not able to spend it with my Mom. But I did send her some pretty tulips, which she loves. Instead, I felt I needed to stay with Kathy. With her son in a war zone, it was a muted day. I made her her favorite dinner, but other than that, it was a very low key day. Robby was not able to call home that day, but she has had limited (almost weekly) contact with him. We learned that he had hurt his ankle pretty badly, pulled ligaments. So, he was on radio duty, but now is back on patrol. About a week or so ago, 3 members of his platoon were killed by an IED. So, needless to say, each day is a waiting game to hear from him that he's ok. We talk to Hannah each day to watch over him.

GrandmaD's hip came out once more. Luckily, she has very good friends that take care of her when we cannot. A heartfelt Thank You to Bill and Dorothy! They spent the day with her at the hospital. The docs were able to get her hip back in without surgery, which is good. She is being very careful (at least that's what she tells me) now. She is scheduled in June to have a constrainer liner installed to try and help prevent future problems. Otherwise, she has been busy fishing and playing cards. She had some relatives come visit and they went to Universal Studios (yes, this was after her hip came out). But, she had a blast.

Kathy had a female procedure yesterday. All went very well, better than expected actually. We spent the nite in the hospital for observation and just got back home today. I have to say, spending the nite in the hospital again brought back some painful memories. Especially since this hospital was directly across the street from the hospital where Hannah passed (and Kathy works). Each time I looked out the window, I was reminded of Hannah's final days here on Earth with us. Now, she watches over us from Above!

We have finally found a house we'd like to call home! We have a signed a contract and are proceeding towards completing a sale. If all goes well, we will close on July 5th. It is a nice spacious house with a pool and lots of trees. As I said before, there are mixed emotions about moving. But we were talking about "the new house" while Hannah was alive, and she was very excited about it. I know she will go wherever we go, which is only about 15min away from where we currently live.

Kathy's nephew, Taylor, continues to do well. He has been off chemo for a few months now, and his last scans showed the tumor in his brain remains stable. And for the most part, he looks and behaves like a "normal" 18yr old. And after alot of hard work on his part to make up for all the school time he lost while in treatment....he will be graduating and walking with his Senior Class next Saturday, June 4th. It's a big event for any kid, but when it's a kid that has endured and fought through what he has in the past 3yrs, it's a truly wonderful event! Congrats to T-Man! Hannah's "Chemo Bro"!

I must say, I sometimes feel conflicted about posting. After all, this is Hannah's site. And there aren't any more updates to give about her life and her fight and I don't really know how many people are still following along. But I try to update on the things that were important to her, like family: GrandmaD, Kathy, Robby, to name a few. I don't know how much longer I will continue to post. Sometimes it's a bit theraputic, sometimes it's a bit depressing.

I've almost completely withdrawn from visiting all the CaringBridge sites, and forums, and listservs...it's still just too damn hard. But it's surely a cause that is close to my heart, and when I am able, I will be more involved. But I do emplore you to continue your prayers for the little warriors, and their families. And for the Angel families, like us. The loss of a child, due to any circumstance, is the most devastating loss one can endure. And it is an endurance. I do continue to speak with other dad's who have lost a child to the beast. And even after years have passed for them, it is still a daily struggle to get through each day. I can relate.

Please, continue your prayers! And contact your local Congressman to support funding for Pediatric Cancer Research. The Carolyn Price Walker Childhood Cancer Act needs to be re-funded. There is also a pediatric brain tumer Act that was just introduced. Call them and Write them. Make them hear your voice!!! To find your local Congressman and send them an email, click HERE. CureSearch is an organization that does a great job on trying to bring attention to pediatric cancer on a national level.

God Bless!

Monday, April 25, 2011 8:50 AM CDT

Happy Easter! We hope you all had a wonderful holiday with family. Hannah loved Easter. She loved coloring the eggs and the egg hunt, especially finding eggs with money! It is truly a significant day, as Christ's resurrection is the reason I know I will see Hannah again in Heaven.

We had Easter dinner with our neighbors and spent the afternoon visiting with them. Then we met Joe and Elise Solloway, Jenna's parents, for dinner. They are down visiting family and going to Disney. Thankfully, Jenna is doing very well. We enjoyed visiting with them very much.

Kathy's son, Robby, is now in Afgahnistan. He left Alaska this past Friday and spent a couple of days traveling. He is still enroute to his final post. We pray God, and Hannah, will watch over and protect him until he can return home safely.

GrandmaD is doing pretty well. She has had a pesky cough that doesn't want to go away. So, she had a chest CT and pulmonary doc visit last week. An xray had shown a small spot of "possible pneumonia", but the CT was clear. So, she is on a hi dose of prednisone and feeling better. We will be going up to visit her this upcoming weekend.

Kathy and I continue to look for a new house. It is a very time consuming process. Even though there is excitement to it, I also feel a bit depressed knowing that Hannah will not need a room in the "new house" (as she called it). She and Kathy used to talk about having a "Diva Den", where boys weren't allowed. And we still plan to have that and will make sure that her presence is all around us.

Please continue your prayers for all the warriors that are still fighting, like Jenna. They, and their families, still need that support.

God Bless

Monday, April 11, 2011 6:44 AM CDT

We went to the Cut for a Cure event last Thursday. They had over 30 guys shave their heads, including some Tampa Bay Lightning hockey players. Like last year, they had some kids help with the shaving. I know Hannah would loved to have helped shave Chad's head! All together they raised over $170,000!! It was a great event, but with a couple of emotional moments for me. But it's important for me to support this cause. www.fastercure.org

GrandmaD made it home from her 2 week Caribbean cruise. She had a wonderful time and thankfully, her hip stayed put. She is already planning another cruise.

Kathy's son, Robby, is still in Alaska. But will be deploying to Afghanistan on April 22. He is a part of the Combat Stryker Brigade. Please pray for his, and all the troops, safety while they are deployed.

Kathy and I have started looking to buy a new house. We've looked at a few. The first one we looked at we loved, but someone already put an offer on it. So, we'll keep looking.

That's about all for now.

Please continue your prayers for all the little warriors.
God Bless

Monday, March 28, 2011 8:17 AM CDT

Well, we made it through last weekend...barely.
Needless to say, it has been a difficult month of March. It still seems surreal that Hannah is not with us here on earth, where she brought so much joy. But I know that she is running, jumping, and flying free in her new perfect body, and that's where I get a little bit of comfort.

Last Saturday, Kathy and I went down to the beach where we spread her ashes a year ago, and released 7 pink balloons (for her earthly birthdays) and 1 purple balloon (for her first heavenly birthday). We cried as we watched the balloons fly out of sight.

The next day, Kathy's son, Robby, returned to Alaska before his impending deployment to Afgahnistan. It was another emotionally charged day, to say the least.

So, this past week, we spent trying to recover from all the emotions.

I went to the Grand Prix this past weekend. Watching fast cars for 2 days was a nice distraction.

GrandmaD has left on a 2 week Caribean cruise with a friend. She was very excited. And we pray that her hip will stay in so she can enjoy her trip.

Pediatric Cancer Foundation is having another Cut for a Cure event on April 7th. Chad is shaving his head again, in honor of 2 children, and Hannah. Please support Chad and PCF by donating in Hannah's Honor. Support Chad

Thank you for your continued thoughts and prayers.

Saturday, March 19, 2011 7:49 AM CDT

One year ago today, our Princess became an Angel.

We Love You and Miss You so much, our Hannah Bear!

Monday, March 14, 2011 7:16 AM CDT

One year ago today, we took Hannah to the hospital for the last time. I remember the day as if it were yesterday. It started out normal, waking up in our bed. Then she had a coughing fit, and afterwards, she could not sit up. She spent the next couple of hours in the fetal position with her face down. While I was deciding what to do, I mentioned calling an ambulance. "No 911, No 911" she cried. So, we loaded up in the van. She sat in Kathy's lap, still in the fetal position. We got to the ER at All Children's. Unbelievably, Hannah was joking and trying to laugh through her coughs. As soon as they took an xray, they saw she had a collapsed lung. They immediately rushed us down the hallway to a procedure room, as I sat on the gurney with Hannah trying to reassure her as I tried to hold back tears. Once in the room, she was still trying to talk. I remember her pointing to one of the nurses who was wearing a Gators pin, and saying "Look Dadddy, she's a Gator". That was the last thing I remember her saying. Once the staff her her sedated, I had to leave the room so they could re-inflate her lung. In some ways, to me, she died that day. Because after that, she never talked, smiled, or laughed again. She spent the next week in an induced coma, as we tried to get her lung function back. But her lungs were too damaged by the interstitial disease.

It was one of the worst weeks of my life, ending with the worst day of my life.
That is this week.

She's been gone now,
For almost a year.
As the days pass,
They still bring tears.

I'd like to wake up,
But this is not a dream.
No more chances,
To see her face beam.

The days are so dark,
Without her pure light.
But when I think of her,
I'm reminded of her fight.

As the days pass,
The pain lingers on.
My mind in a fog,
Knowing she is gone.

But her light remains,
In All that she was.
She reached many souls,
and they cried, because.

When I think of her,
My eyes start to tear.
Because of the pain.
Because she's not here.

Really, there are no words.
Only the deepest hole,
Of a Precious life that was.

Please continue your prayers for ALL the little warriors that are still fighting for their lives.

Wednesday, March 2, 2011 8:02 AM CST

We want to Thank Lyndsay Whitney for running the Gasparilla half-marathon in Hannah's Honor this past weekend, and Thank those that donated to the Pediatric Cancer Foundation to support her. She raised over $2,400 in her Run for Hope. I was honored that Lyndsay was so touched by Hannah and her spirit, that she wanted to honor Hannah in this way and to help raise money for PCF (Lyndsay used to work for PCF before becoming a new mom.) Congrats Lyndsay!

GrandmaD and my nieces, Harriet and Jessica, came down for a visit this past weekend. Both GrandmaD and Jessica had birthdays in February. So, they came down to celebrate by going to get their nails done. It was a total "girl's day" and I know Hannah would have loved it too. Afterwards, we all went to dinner at Sloppy Joe's on the beach. It was a beautiful sunset and a good time was had by all.

My good friend, Stacy, who is a school teacher, has been working very hard on a fundraiser called, "Art from the Heart". She says Hannah is her inspiration and she felt compelled to use Hannah's story to help raise money for cancer research. She has organized several schools in her area to have children draw or paint pictures in their art class, and then to sell this artwork and donate the proceeds to PCF. She hopes to have the kickoff sometime in May. We certainly appreciate and support these efforts, and will let you know more details in the future.

Well, obviously, it's March. And although I knew it was coming, it has affected me deeply. My mind is filled with memories that are not so kind. This was a very difficult time for Hannah last year. Her breathing and coughing fits, her feeding issues and nausea, were all getting worse. But her spirit was still strong and unbelievably, never complained. I am still at a loss to articulate her strength and light. I'm also unable to articulate the loss of that light. It affects my every waking moment, and some of my sleeping ones too. I still struggle with making any sense of it all. At times, just "being positive" doesn't really cut it. The pain lives at the surface, and so do the tears. I don't know if or when that will change. We still are living day by day, just trying to get through each one. And I know this won't just go away, because it's been a year. I don't think grief looks at a calendar.

Kathy's son, Robby, is coming home this weekend. He has been in California for intense training before his deployment to Afghanistan. He will be here for a couple of weeks and is excitied to be coming home. We will be having a big family & friends BBQ and softball game next weekend, so everyone can spend some time with him. He will be leaving on March 19th. No joke. Of course, we are very happy to have him home, but very aware of what is at stake when he leaves. Please pray for Robby's safety, and for all of our troops in harm's way.

Thank you for your continued thoughts and prayers.
We miss and love you, Hannah Bear!
God Bless

Friday, February 4, 2011 9:43 AM CST

It's hard to believe we've blown right through January. But here we are, February 2011.

My mind has been remembering last February. If you remember, Kathy & I drove Hannah to Texas Children's for her lung evaluation. Driving your sick child, half way across the country, was a stressful time indeed. But with Hannah, we always tried to have some fun. It was Super Bowl week, and Hannah and Kathy were rooting for the Colts, I was going for New Orleans. Hannah loved teaming up with Kathy against me. (I missed most all of the actual Super Bowl moving our hotel room becuase Hannah didn't like being on the top floor.) Hannah also discovered Nachos N Cheese at Taco Bell on that trip. A couple of weeks after we got back to FL, Hannah said she wanted to go back to Texas. I shuddered, considering all that happened on the trip. Why? I asked. She said she liked "staying in hotels on the road trip". It shows how she could find something good out of something bad. I try to do that too. But I'm not nearly as good as she was. We all could learn from that.

After our trip to Texas, her lung disease progressed quickly. It was such a difficult time. Holding her through her coughing fits, not being able to save her the pain. Watching her puke after the feedings and as she became thinner and thinner. Knowing that she survived cancer, but she wouldn't survive this.

Now, March looms large in my mind. I know it doesn't really change anything. But I've measured the last year in milestones, and getting past them. It so hard to believe that it will soon be a year since she has passed. I'm not sure how to approach that day, but I do want to do something special for her on that day, her first birthday in Heaven. I will always live my life without her, but with her.

Lyndsay Whitney from the Pediatric Cancer Foundation, is running the 2011 Gasparilla half marathon to raise money for PCF in Hannah's Honor. She knew Hannah and always was so kind to us. Please Support Lindsay and help her reach her goal!

As always, thank you for the continued thoughts and prayers. Please continue them for all the little warriors that continue to fight for their lives.

Wednesday, January 5, 2011 6:26 AM CST

Happy New Year 2011!

Well, we made it through the holidays, and I'm glad they're over.

The week at the beach condo was nice. We got to walk on the beach Christmas morning before the weather turned chilly. GrandmaD was able to spend a few days with us, we went to a candlelight service on Christmas Eve with Kathy's dad. We had Christmas dinner at the condo with Kathy's family, including her son, Robby. He had come home from Alaska, so he didn't think it was chilly at all. His son, Michael, was very enjoyable to watch. He is 16mo old, and is moving non-stop. Taylor and his family came for several visits. Taylor seems to be doing pretty well. His last scans were stable. A couple of my brothers were able to make it over for a short visit. My best friend, Jeff, was also able to make it with his kids, which we hadn't seen in almost a year. Having lots of visitors gave us some distraction. All in all, it was ok. Partly good, partly sucky. Hannah's absence was felt by all. We brought her picture, and her stocking, and her Christmas palm tree she had decorated last year, so we know she was there with us.

The "hole" I still feel is indescribable. Sometimes, I cannot imagine how to go forward. At times, I'm still just going through the motions of living. I don't know how long this lasts, if it will ever change. My life with Hannah changed me, now my life without her has changed me as well. Even as I write this, tears fall. In some ways, it seems surreal...but it is all too real.

Wishing us all a better year ahead.
Please continue your prayers for the little warriors, they are still fighting.
God Bless all of you and your families.

Wednesday, December 15, 2010 8:54 AM CST

Well, the holidays are in full force. Needless to say, it has been a very difficult time for me. To say I have no Christmas spirit would be an understatement. There is no tree, no decorations. I did get a lighted angel to hang in the window, and that is it. And I only did that because Hannah loved Christmas lights. We would ride around neighborhoods looking at all the lights, we would go down to a park where it was all lit up. Of course, I can't walk into a store without seeing something that she would have said, "Daddy, I really want this for Christmas". It's all become just a bit too much. I'm ready for the whole thing to be over. That being said, I'm trying not to be too much of a downer for others. But we all deal with things differently, and I just can't fake being "Merry"...I'm just not. I really wish I had some profound wisdom or insight that would make sense of it....I don't. My heart aches every day, I still cry every day. The pain actually seems to build instead of decrease.

Kathy and I decided that we needed to be out of the house on Christmas, so we rented a condo on the beach for the week. I think that will help some, to be in a different enviornment, without the memories. Kathy's son, Robby, will be coming home from Alaska, where he is in the Army. We are very excited about that. And we will have Michael, Robby's son, with us as well. Although it is difficult at times to have him, he does bring sunshine into the room. So, we will have family come to the condo when they can, scheduling is a bit tough. Hopefully, it will warm up a bit...it's been a bit chilly here in FL.

I would like to recognize that we are not the only ones dealing with loss this holiday season. We have had friends and family that have lost loved ones as well.

Sam Hutchinson -- NB warrior: became an Angel in March
Ted Rindfleisch -- friend's Father
Betty Carpentieri -- Kathy's Dad's wife
Jeanne Davis -- Mike's brother's mother-in-law
Daryl Sanchez -- friend's husband

And there were many more litle warriors that lost their battle with the monster, as well as children that passed due to other types of illness. My heart goes out to all of them.

Hannah loved life and lived every minute to the fullest. She was my inspiration and I devoted everything to her. Although her memories still bring tears, I wouldn't trade them for anything. I was blessed to be her dad.
We Love and Miss You, Our Hannah Bear!

Merry Christmas and Best Wishes for the New Year to all of you.

Thank you for your contiued thoughts and prayers.

God Bless

Friday, December 3, 2010 7:36 AM CST

I am stuck in sadness. There is no Joy.

Tuesday, November 23, 2010 8:38 AM CST

Thanksgiving is almost here, hard to believe. We wish all of you, and your families, a wonderful Holiday. Cherish the ones you love. Needless to say, it has been a very difficult year for our family. And sometimes, I admit, I'm not exactly thankful. But I am verythankful for my friends, my family, GrandmaD, and my lovely wife, Kathy, without whom I never would have made it through any of the last few years. Life is rarely what we expect it to be.

We had a good turnout for the Walk this past Saturday, about 500 walkers and runners. I want to Thank those who walked in Hannah's Honor and those that donated. Hannah's team came in 2nd place, raising over $4,000!!! I know Hannah would be proud. I am amazed by everyone's response and support. We plan on doing even better next year!

Last week was a difficult week in other regards. There were deaths in extended family. Kathy's dad's wife, Betty, passed after a long illness. And my brother's mother-in-law, Jean, passed due to complications after breaking her hip. I'm sure Hannah welcomed them with her smile and open arms. Another friend's mother has been in the hospital for over a week due to her gallbladder and complications. We hope she can get out of the hospital today and go home.

And there are still our little warriors, fighting every day. Please continue your prayers for them and their families.

Monday, November 8, 2010 7:40 AM CST

UPDATE: PLEASE Help support Hannah's Honor Team raise the most money for the Pediatric Cancer Foundation this Saturday!!! We are walking in Honor & Memory of our darling Hannah. Please clickDonate

It's November already. And we had a little cold front come through Florida, so it feels a little like fall.

Yesterday, we went to a birthday party for one of Hannah's friends. It was a bit difficult for me, seeing all the little girls with their ponytails, jumping around in the bouncy house. Hannah loved birthday parties, especially her own, but she enjoyed anybody's birthday party. I know she was looking down with a smile!

Only 2 weeks left till the Heel to Heal walk for the Pediatric Cancer Foundation. First, THANKS to all that have donated so far. If you have not yet donated, PLEASE consider supporting Hannah's Honor Team by clicking Donate, for Team donation or select "Sponsor a Participant" and select a team member's name. All the money goes to support clinical research trials for less toxic, more effective treatments. This is the only way we can defeat childhood cancer.

We all still continue to struggle getting through each day without our HannahBear. She brought sunshine into all our lives. Sometimes it seems pretty dark without her here with us. I just have to believe that she is in a much better place and free from pain. And learn to live with just her memories.

Please continue to pray for all the little warriors, and their families, who continue their fight.

Monday, October 25, 2010 10:53 AM CDT

It is hard to believe we are coming to the end of October, but the decorations and the weather say that we are.

Hannah always loved Halloween and picking a costume and dressing up. I remember that she would start thinking about her costume for the next Halloween as soon as she was done trick or treating. (We actually bought a costume for this year a few days after last Halloween.) I posted a pic from last year. She was SuperGirl, which I thought was very fitting. Our dog Rocky, was UnderDog..complete with cape. We went trick or treating with Kayla and Jacob in a very decorated neighborhood. But I remember it was hot and Hannah had to be carried that last half of the walk. Sadly, it was a sign of things to come. But she still had a blast. I think of her smile as she walked Rocky, with his cape we made. She always lived every moment to the fullest.

Obviously, this year will be much different for us. No trick or treating, no pumpkin to carve, no decorations for the house. Hannah liked to compete with our neighbors for the most decorations. "We'll show those Buhnerkempers", she would say. Believe it or not, Halloween is proving to be a very difficult time for me. I think I will be boycotting it this year. No Great Pumpkin for me, Thank you.

This past Friday, the Pediatric Cancer Foundation held their annual Fishing Derby for the kids and Fishing Tournament for fundraising. Hannah and I went last year and she really enjoyed herself, and was quite fashionable while fishing. That night, she was honored with the Heart of Courage award. And God knows, she deserved that. So, this year, the Foundation honored Hannah by dedicating the evening to her memory. It was an emotional evening, but I was honored by how she was remembered. GrandmaD and my oldest brother were able to be there as well. A gracious "Thank You" to the Foundation.

On Saturday morning, we got up very, very early, about 4:30am, to go on a hot air balloon ride. GrandmaD said that was something that she had always wanted to do. It was a wonderful experience. We got to watch them prepare the balloon. Then, as the sun came up, we floated with the wind for about an hour with a perfect landing. I know it's something Hannah would have loved, but she's flying wherever she wants now. Though I'm pretty sure she followed us!

Next month is the annual walk fundraiser for the Pediatric Cancer Foundation. This is an event that we've always supported. I would ask for your help in supporting Hannah's Honor Team as we work to raise money for research. The Foundation does great work that is needed to find more effective, less toxic treatments. So please consider making a donation in Hannah's Honor by clicking Donate.

Thank You for the continued thoughts and prayers. And please continue your prayers for all the little warriors who are still fighting, and their families.
God Bless

Saturday, October 2, 2010 11:05 AM CDT

She's still gone......and it still sucks!

Sunday, September 19, 2010 6:34 PM CDT

It's now been 6 months since Hannah became an Angel.

And each day is a painful reminder that she is not here. Each day is filled with reminders and memories and tears. Although we are learning to just get through each day, it's really not any easier. In fact, in some ways, it's more difficult. The reality...the finality...the hole in our lives.

This past week, we went to the Breakfast of Hope for the Pediatric Cancer Foundation. Congratulations to Chad Harrod and his wife on the birth of their second son, Hank. Although, we were kind of hoping for a Hannah.
There was an excellent turnout, about 350 people, to support the work the Foundation does. They had some of the doctors involved with the research speak to the audience about the need and importance of their donations to the research. Overall, I did ok getting through it. There were a couple of moments that made me choke up, like when they showed Hannah's picture on the screens. Thanks to my wife, and friends, Missy and Stacy, for going with me for support. My family, and wife, and friends, have all been a great support for me and we are all still grieving in our own way.

I have a good friend, Glenn, who's father, Ted, passed away this past Thursday, due to pancreatic cancer. Glenn's mom, Ellen, is such a specail lady who always loved to see Hannah. This family was very supportive during all of Hannah's journey. I hope I can be just as supportive for them. Please pray for their peace.

As a friend reminded me this past week....
Life is fragile, at best.

Tuesday, September 7, 2010 8:51 AM CDT

Hope everyone had a good holiday weekend.
As most of you know, the past 2 years, Labor Day weekend has been painful for the Douglas family. Two years ago, Pappy passed on Sept. 4th, and last year, my brother, Robby, passed on Sept. 4th. So this year, we decided to have a family gathering at Jim's house, my oldest brother, in Vero Beach. GrandmaD, Uncle David, and niece Joannah came down to Vero and me and my wife, Kathy, drove over. Jim took us out on his boat on the Indian River on Saturday. We had a picnic lunch on a little island where we saw lots of wildlife, including some dolphin. It was a very enjoyable day, until we got home. GrandmaD had brought down her dog, Trouble, who is very old and not doing so well. Evidently, Trouble got out of the porch and was missing. GrandmaD was very distraught. But after a couple hours of searching, we found him! I'm sure God was looking out for him as we found him about 1/2 mile away from the house. So the day ended on a happy note. And all in all, it was an enjoyable weekend with family.

On Labor Day, Kathy and I went over to our neighbors for some ribs and hang out at the pool. Hannah loved Todd's ribs and playing in the pool with Kayla and Jacob. Even though we enjoyed the time, it's also difficult not having Hannah with us during these times. She is always missed, in everything we do.

September is Pediatric Cancer Awareness month. Please consider donating to any of the very worthy causes that are working to find a cure for pediatric cancer. Here are a couple that I strongly recommend.

Pediatric Cancer Foundation

Lunch for LIfe

Taylor is doing well. He recovered pretty quickly from his last surgery. He had MRI scans this past Friday to monitor the tumor in his brain. He was excited to be able to go to school this week. He really is a positive and bright kid to be around.

Please continue your prayers for the little warriors that are still fighting and for their families.

Monday, August 16, 2010 7:27 AM CDT

UPDATE: Taylor's surgery went well on Tuesday. They removed an 8cm section of his skull bone due to the bone being dead and infected. He recovered pretty well. His 18th Birthday was on Thursday. We had a party at the hospital and then...he got to go HOME! Please continue your prayers for him. His website: Taylor

It's been 3 weeks since Hannah's birthday, and I must admit, I have been in a "funk" since. I'm not really sure how to describe the stage of grief that I feel. It's really overwhelming most every day. Memories of her still bring smiles, and still bring tears. In addition to coping with her loss, I feel lost. How am I supposed to continue on? Sometimes, it seems almost pointless. But I know it's not. I have a loving wife, who is most supportive, but she hurts too. And even though we have a very strong relationship, these past few months have been very difficult for us. The house seems eerily quiet, except when Michael is here. The reminders are everywhere, everyday. I went for a walk this morning in the park where Hannah and I would feed the ducks, and swing, and she would ride her bike, and watch Jacob play baseball. All those memories rushed back, along with the tears. The memories are precious and I hold on to each and every one, because that's all I have now.

Seeing all the kids getting ready to go back to school has been difficult as well. Hannah loved school and loved getting a new lunch box and new shoes. I know she will be missed at Bayshore as well.

This past week, I went to visit GrandmaD and we went to pick out a marker for Hannah to put on their grave. It definetely wasn't a fun time. But I know it's important for GrandmaD to have something, and it seems fitting to have it there.

Also last week, Robby (Kathy's son), left for Alaska. This will be his home base. I'm glad he got there in summer. At least he will have some time to enjoy before the harsh winter comes. He seems to like it so far. We are able to use Skype to have video calls, Kathy enjoys that alot.

That's all for now.
Please continue your prayers for the little warriors, and their families, who are still fighting.

Sunday, August 1, 2010 5:26 PM CDT

I know I have not posted in awhile. We have had a busy, and bittersweet couple of weeks.

Of course, last Sunday was Hannah's birthday, and as I expected it would be, it was a very difficult day. In the morning, GrandmaD and I planted some new butterfly plants in our "Hannah Garden". Hannah loved parties, especially birthday parties, especially HER birthday party. I remember when we would have her birthday party and right after, she would start talking about her next birthday. So, with that in mind, we had a small party for her last Sunday at our neighbor's house. We watched some video of when Hannah was born and her first and second birthday parties. Todd cooked what she always asked him to make, chicken fettucini (she loved the noodles), we sang Happy Birthday and had her favorite, ice cream cake. Then we planted a crape myrtle tree in their front yard in her memory. Kayla and Jacob decorated a stone butterfly and put it in front of the tree. I can't really say we "celebrated", but we did recognize her birthday, and I thought that was important to do, but also very difficult to do. I just can't imagine what the holidays will be like without her smiling face.

And today was Michael's 1st birthday(our grandson). It was a festive and festive event with lots of people and hamburgers and hot dogs, swimming, and presents and cake. He is such a cute boy and happy almost all of the time. Hannah loved having "Baby Michael" over to the house. We have been helping taking care of him, every other weekend, while his dad, Robby (Kathy's son), has been away at Boot Camp. And speaking of which, we went to GA for his graduation from Boot Camp. We returned home with him a couple of days before Hannah's birthday. Robby will be stationed in Alaska and leaves in a week.

So, as you can see, we have had an emotional couple of weeks. Seeing a son become a man, remembering our beloved Hannah, celebrating a new life. The cycle of life does go on, even though sometimes it feels to me as if all of it should stop...it doesn't, and it won't. I just have to learn to live life without Hannah in it. And that just plain sucks, for me. I know she is pain free and flying free.

Please continue to pray for all the little warriors who are still fighting.

Sunday, July 25, 2010 6:29 AM CDT

Happy Birthday Hannah!!!
We Love You!!!
We Miss You So Much!!!

Monday, June 21, 2010 6:51 AM CDT

Yesterday was Father's Day, and I have to say, it sucked!
My Dad is gone, now Hannah is gone, both of my reasons are gone, so it's just another day. It was a hard day, a somber day for me. I didn't do anything all day but eat, watch TV and take a nap. I guess that's what I needed. I talked to a couple of other Angel Dad's, they have other children, which really makes it a bitter sweet day for them.

I continue to go through the motions of getting through each day. I have to admit, I'm struggling. Every moment, of every day, my heart aches. And the tears are never far away. I guess, at some point, maybe that changes. Memories do bring smiles, then tears. My sadness is not because of the past, but for a future without her.

Please continue your prayers for the little warriors, and their families, who are still fighting.

Tuesday, June 15, 2010 7:46 AM CDT

The days continue to come and go. Each one brings challenges to get through the day. Memories flood back at any moment, prompted by the littlest thing; a show on TV that Hannah liked, a restaurant where we ate dinner, a song..really, almost anything.

Last week, Kathy and I planted a little butterfly garden in our backyard for Hannah. We picked sunflowers, because Hannah and I had planted some awhile back, outside her bedroom window. We would water them and watched them grow. We also planted some plants that attract butterflies. Hannah liked to plant flowers and water them and then pick the blooms. The garden seemed kind of corny at first, but I know Hannah would like it and I like looking out the window at the garden. We're gonna get some little fairy statues to put in it too.

This past weekend, we took a road trip up to Ft. Benning, GA to visit Robby, Kathy's son. We took Michael, Robby's son, and Taylor (who has brain cancer), his cousin. Robby is in the Army going through boot camp, this was his first leave. It was short, only 36hrs, but it was good to see him. We listened to his stories about drill sargeants and the stuff the make them do, pretty rough. We stayed in an Army campground in little cabins. They were a little small, but nice. I know Hannah would have liked the trip. But I guess she can go whereever she wants! Hopefully, we'll make the trip again at the end of July for his graduation.

I'm not looking forward to the upcoming weekend, Father's Day. I know it will be a difficult day for me.

Please continue to pray for all the little warriors still fighting and for the Angel families who still struggle with the loss.

God Bless

Wednesday, June 2, 2010 6:35 AM CDT

Last nite was the "Cut for a Cure" event to benefit the Pediatric Cancer Foundation. It was a huge success raising almost $250,000!!! About 20 guys had their heads shaved to raise money and bring awareness. They also did it in honor of someone special. Chad Harrod shaved in Hannah's honor. As most of you know, we've had a special relationship with PCF for some time. And Chad always has had a special connection with Hannah. We certainly appreciate all they do for pediatric cancer research. You can still make a donation to this cause at Cut for a Cure. Please forward this website to all your friends and family.

Every day is still a challenge to get through. Everything I see, everything I do, every place I go, reminds me of Hannah. She is ever present in my mind and the tears are always just under the surface. She was the light of my life, and now she's gone.

Tuesday, May 18, 2010 4:11 AM CDT

Hannah is still gone...sometimes it seems like a bad dream from which I'll awake, and sometimes the pain is crippling.

When people ask, "How are you doing?", my response is usually something like, "Day by Day". Which is true, and something I've got 6yrs of practice at. But it's really more like, "Moment by Moment" or "Memory by Memory". Because that's how it hits me during each day, it's a roller coaster ride. (Hannah loved roller coasters!) Every day, all day, I am hit with reminders of things we did, or places we used to go, or things she used to say. And most times, it brings tears. I'll be glad for the time when it brings more smiles than tears. Don't get me wrong, there are many wonderful memories that make me laugh and smile, then those same memories make me cry. I think the pain of loss is actually getting stronger. So, getting through each day is a challenge, to say the least.

A couple of things I may have forgotten to mention before. After she passed, we were contacted by the Lion's Eye group, they asked if we would consider donating her cornea's, which we did. Hannah's eyes were a beautiful blue and so expressive, if any part of her should live on, it should be her baby blues. But because of some of the treatment she received, they used them for research instead of tranplant. It was still for a good cause and I'm glad we did it. Next, Hannah was very concerned about the children in Haiti after the earthquake there. So, we donated almost all of her clothes to an orphanage in Haiti. So, there are some very fashionable little girls running around down there. I know Hannah would approve.

Speaking of good causes, Please be sure to support Chad Harrod and the Pediatric Cancer Foundation in the Cut for the Cure fundraiser. He is having his head shaved in Hannah's honor to raise money, and several others are having their head shaved in honor of other cancer kids. As most of you know, we are very close to this group. Chad has had a special bond with Hannah since the first Fashion Show. Please donate by clicking HERE and then selecting Chad Harrod to support.

In other life news, Kathy's son, Robby, is away in Boot Camp at Fort Benning, GA. Obviously, it's been rough, on all of us, especially his mom. But it sounds like he is starting to adjust ok to Army life. He left only a couple of weeks after Hannah's passing, so it was a hell of a double whammy on us and her passing deeply affected him as well. On the brighter side of that, we have been spending time with Michael, Robby's 9mo old son, caring for him every other weekend. It was difficult the first time, being so close to Hannah's passing. But it is getting better, he's such a good baby and he brings sunshine into the house. Hannah loved baby Michael too.

Life does go on, but that doesn't mean that we're moving on. Hannah is in every moment of every day. We are still grieving, we still hurting and I'm afraid, we always will be.

Friday, April 16, 2010 8:33 PM CDT

Four weeks ago today, I held my precious baby in my arms as she took her last breath. It was the worst day imaginable. The memories of that day, that week, will be with me forever, memories that no parent should have, but many do. As I held her frail body and cried, and told her the fight was over, I focused on her being free from the pain, free from the battle that had consumed our lives. And now, begins the battle of learning how to live without her. It is the most difficult thing I've ever faced. Believe me, there have been difficult days and times during the last six years, but nothing compares with this. The hole that exists is immeasurable and bottomless and black. The pain is constant and physical. I cry at 4am, I cry while driving, I cry watching TV, I cry because of the memories, I cry because of the future....I cry. I know that she is in a wonderful place, with a new body, flying and free from pain and that I will see her again, one day. And that's what I'm holding on to, with both hands. But for me, right now, the pain of the loss is overwhelming. I will never be able to hold her again, never hear her call me "Daddy", never see her smile, never hear her laugh, not on this earth.

I am so thankful for the love and support that we have received during the past month. I appreciate all of it so much. Many have said, "There are no words", and while that is true, sometimes words do help express the feelings.
The poem below was on one of the many sympathy cards we received.

Her Journey's Just Begun

Dont think of her as gone away-
her journey's just begun,
life holds so many facets-
this earth is only one.

Just think of her as resting
from the sorrows and the tears
In a place of warmth and comfort
where there are no days and years.

Think how she must be wishing
that we could know today
how nothing but our sadness
can really pass away.

And think of her as living
In the hearts of those she touched...
for nothing loved is ever lost-
and she was loved so much.

E. Brenneman

Hannah may be gone from this life, but she lives on in a much better place. It is very hard for us that are left behind, that were touched by her and that miss her so very much. Her tiny feet left a big imprint on our hearts. But I am trying, much in vain, to carry on in her name.

Monday, April 5, 2010 4:57 PM CDT

Hannah's Tribute service was beautiful.
Many people came to give tribute to our Angel.
After the service, her friends, Kayla and Jacob, released the butterflies in the Prayer Garden at the church.
At sunset, we spread her ashes in the sand and the sea that she loved so much.

Thanks to all of you for the love, prayers and support during this most difficult time and during the past six years of this long journey.

I will continue to update on occasion as I now begin my own journey of learning to live my life without her in it.

Saturday, March 27, 2010 5:21 PM CDT

A Tribute Service for Hannah will be held Saturday, April 3rd @ 1pm at First Baptist Church of St. Petersburg.

All are invited to join us in remembering such an amazing little girl. I would like this to be a time for all who knew her and those who were touched by her life, to come together and give Tribute to her.

I know there will be tears of sorrow, but I hope there will also be tears of joy, because Hannah is breathing easy and flying free in Heaven.

This is a tribute service for a special child, there is no body or burial. It will be as "kid-friendly" as possible. Those of you that are parents can make your own decision regarding whether to bring your children.

In lieu of flowers, donations can be made in Hannah's honor to:

Pediatric Cancer Foundation

Or

Children's Neuroblastoma Cancer Foundation

Both of these organizations are doing great work to find a cure less toxic treatments for pediatric cancer.

It's hard to believe it's already been a week since Hannah became an Angel. Her body was cremated on Friday. It seems time is standing still and it seems like time is flying by. I have gone into her room just twice and talked to her and cried. To say this has been a difficult week is truly an understatement. In addition to the feelings of loss, attending to the details of her cremation and arrangements for her service, writing her obituary, all things that are just not fun...at all.

We continue to feel the love from so many people that were touched by Hannah's life, many that never even met her. She is an amazing spirit that will remain in all of us.
Thank you all for your continued prayers.
Peace & Strength-now more than ever

Wednesday, March 24, 2010 8:26 PM CDT

The outpouring of love has been amazing. We Thank All of YOU for your sentiments.

I know that all of us are suffering Hannah's loss in different ways, but we must remember....SHE is in a much better place.

I am still finalizing a Tribute Service for Hannah. It will be April 3rd, in St. Petersburg. Details to follow.

Help us get $50,000 for the Pediatric Cancer Foundation in Hannah's name, that would be a Great Tribute. Just take a moment and vote for PCF by clicking HERE.

In lieu of flowers, donations can be made to:

Children's Neuroblastoma Cancer Foundation
In Honor of Hannah Douglas
39651 Treasury Center
Chicago, IL 60694

I hope you can understand that right now, I cannot express most of what is banging around in my head. Last week was the most horrific that a parent can face or endure. The sense of loss is immense, and only just begun.

Thank All of you for your thoughts and prayers.

Friday, March 19, 2010 9:41 PM CDT

12:50pm - My princess warrior was set free to fly. No more pain, no more IVs, no more owies, no more doctors. Heaven's arms wide open to welcome the most precious angel.
Fly Baby, Fly!

Thursday, March 18, 2010 11:06 PM CDT

Today, Thursday, started out with much hope.
Hannah had kept her CO2 numbers down through the nite and was stable. So, around 11am they switched her to the conventional vent. But it was quickly evident that the vent was not going to be able to support her because her lungs had become so stiff, from her disease. So she was put back on the oscillator vent. That extinguished our last hope.

We switched from management mode to comfort mode. They discontinued most of her meds, except for pain and sedation.

In the most dreadful day a parent can have, we made the decision that she has fought long enough and the earthly battle is lost.

We called friends and family to come and tell her how much she is loved.

Tomorrow, we will let go of our precious warrior and she will fly free to heaven.

Wednesday, March 17, 2010 8:48 PM CDT

Hannah has had a turn towards the positive! Praises!

She was stable all through last night. Her carbon dioxide (CO2) levels were good and stable. Her chest xray was markedly improved. Her blood counts were also improved. During the day today, she was weaned down on the oscillator vent and as of now, she is on minimal settings. If she can maintain her CO2 levels through the night on these settings, we will switch her to the normal vent tomorrow morning. Then we will have to go through another weaning process to get off that vent. So, she still has a long way to go. But we are very encouraged by the positive steps she made today. It is still a waiting game and that makes it very difficult, for us. We pray that her body still has the strength to complete the turnaround. We know that she has the fighter spirit!

We certainly appreciate all the prayers being sent up to heaven in her name....and please keep sending them.

Tuesday, March 16, 2010 8:48 PM CDT

Hannah remains sedated and on the oscillator vent.

She did ok last nite until midnite when her heart rate, blood pressure and oxygen saturation all dropped dangerously low. By this morning she had levled out pretty good. But they had to adjust the vent back up. They also took a chest xray which showed some fluid around her right lung. So today, they started her on lasics (to remove excess fluid). They also suctioned out her lungs, removing some mucus. She had to have some red blood because her hemoglobin (carries oxygen) had dropped down a little. They also started an antibiotic to help prevent infection. Overall, she was pretty stable throughout they day. Her carbon dioxide levels were pretty high this morning, in the 80's. But after all the medical management, they were in the upper 50's-60's. Hopefully we can maintain that through the night and if so, try to wean off the oscillator tomorrow.

The staff her at All Children's PICU has been great in caring for Hannah. They are so gentle and compassionate with her. It's good to know she's in good hands.

GrandmaD came down Sunday nite and has been a great comfort to have around. I even tried to help her with some crosswords. We have been trying to keep the number of visitors down to provide a quiet room, plus in ICU they only allow two at a time in the room. Thanks to Todd for bringing dinner tonite...it was yummy! And my wife, Kathy, has been invaluable. As usual, she is my rock.

Many have called or written or texted offering to do anything to help and letting us know that Hannah is in their thoughts and prayers, which are all greatly appreciated. But thats really all that can be done, prayers. This is clearly out of our hands and only in His.
So, please keep the prayers lifting up to Heaven in Hannah's name.

Monday, March 15, 2010 9:03 PM CDT

Today was a pretty good day, at least in an ICU.

Hannah is still fully sedated and on the oscillator vent. Her carbon dioxide numbers did come down into the 50-70 range (it fluctuates a little depending on her state when they pull the blood). They have started the process of weaning down the oscillator. Hopefully, her levels will stay stable as they adjust down the vent. If that does continue, we hope that she can be put back on the normal vent sometime tomorrow. We had them put a PICC line in today (deeper vein access). With this line in, we were able to start TPN & lipids (IV nutrients). This will give her some electrolytes and much needed calories too.

So, our plan remains the same. Try to keep her CO2 (carbon dioxide) levels down and wean off the oscillator vent, switch to the normal vent, then wean off that. The main concerns are: CO2 levels and the longer she remains on the vent, the harder it is to come off the vent.

We remain hopeful that Hannah will be able to come off the vent and come home. However, it is painfully obvious that there is a very real possibility that won't happen. Needless to say, these are not pleasant thoughts.

Please continue your prayers for Hannah, she is in dire need of them.

Sunday, March 14, 2010 8:52 PM CDT

Today was not a good day. I am writing from the PICU at All Children's Hospital.
Hannah had a pretty decent nite, slept pretty well. After she woke up, she complained of "pressure" in her back, she pointed to where her lung would be. After a pretty intense coughing episode she said the pressure was gone, but that her tummy felt bad. I gave her some medicine for her tummy, which did make her tummy feel better. However, following the coughing episode, for all morning, she had to be in the fetal position, face down to the floor. If she tried to sit up, she would start coughing. After 4hrs of trying to work throug this, I decided we were going to the ER. I called the pulmonary on-call doc to give them a heads up. Even Hannah agreed to go see the "experts". We were taken back right away and a chest x-ray showed her left lung had collapsed. She was immediately taken into a procedure room where they placed a chest tube to help evacuate the air in her chest so her lung could inflate. Because of her pulmonary fibrosis, her lungs are very stiff. And due to the sedation of putting in the chest tube, her carbon dioxide levels reached very high, almost lethal, levels. So, they had to intubate her and put her on a ventilator. Then we were taken up to the PICU. Her carbon dioxide levels did come down, but not as much as they wanted. So, about 8p they switched her to a different type of ventilator called an oscillator. Which, as I type, has helped reduce her carbon dioxide levels from 110 to 74, normal is around 35-45. Hannah's baseline is normally elevated because of her lung disease. Needless to say, we are in for a very difficult week.

Prior to all this, we had taken her to the GI doc on Wednesday because we are not winning the weight battle (26.5lbs). They suggested continuous slow feeds. So, we started that and she seemed to tolerate the feedings ok. But it does mean she has to be hooked to the feeding pump almost all the time. Otherwise, she had a pretty good pulmonary week, her baseline is still about 3L of oxygen. Her coughing fits were minimal. Her energy was decent, at times.

During these times, we are reminded of how blessed we are with so many wonderful friends. The messages of love and support and prayers are greatly appreciated. Please continue your prayers for Hannah, that her carbon dioxide levels get down, that she can come off the ventilator soon and come home. God Bless.

Friday, March 12, 2010 9:27 PM CST

March 12, 2004 -- Hannah was diagnosed with neuroblastoma, stage IV.

That was the start of a very long and difficult and painful journey. One that is not over and has become even more difficult.

Please pray for Hannah.

Tuesday, March 9, 2010 6:07 AM CST

GrandmaD came to visit us over the weekend. We always enjoy having her with us. She brought a big bag of beads down and her and Hannah had fun making bead strings and doing puzzles. Hannah really enjoys going for walks in her stroller and the weather has been wonderful for that. So, we went across the street to see her friend, Jacob, play baseball. She ate some french fries and a snow cone at the ballpark. Then we went to Pikasso pottery where Hannah and her friend, Kayla, painted some pieces. Hannah has always loved painting! On Sunday, we went and bought our own little pottery wheel and had fun making a dish (of sorts). But dad kinda messed it up, so we'll have to do it over. Hannah enjoyed it because it was messy!

Hannah has remained stable. Her oxygen needs have increased slightly, her baseline is about 3-4L, which is pretty high. Her coughing episodes have remained about the same, but she needs more oxygen to get through them. And although the vomitting is minimal, we are having a difficult time of getting more calories into her than she is burning up. If we try giving the tube feedings too fast, it causes her breathing issues to increase. Her weight is now 26.5lbs. We will start her on an appetite stimulant, although her desire to eat by mouth has increased a bit already. If she can eat more by mouth, than the tube feedings can add to those calories instead of being her main source of calories. She is becoming weaker. Some days are better than others, but each has its moments, both good and bad. Her mornings have gotten tougher, but the afternoons and evenings have seemed to have gotten a little better.

She has not received any more steroid treatments. The docs have told us they will support us in any decision. Not doing anything is very difficult, for me. But that is where we are at. My focus is keeping Hannah as comfortable and happy as possible.

The Pediatric Cancer Foundation is having their annual Fashion Show tonite. We decided it would be too much to try and take Hannah. I'm sure it will be a wonderful event and we are disappointed Hannah won't be able to attend.

Please continue your prayers for Hannah, she desperately needs them.

Monday, February 22, 2010 6:53 PM CST

We were able to have the special wedding on Sunday. It was a beautiful day with lots of friends in attendance. And although Hannah was having a bit of a rough day, I think she still enjoyed it as much as she could. She really liked the limo ride and getting to wear her pretty dress! Her and I danced to Hannah Montana for the father/daughter dance. I did my best not to cry, but I did. As did most of the rest of the crowd. I'm glad we were able to do this for Hannah. I know it was memorable for her.

Thank you to all that attended and helped make the special wedding day happen! Especially to Todd, who cooked a delicous meal, to Ed for being instrumental in getting the clubhouse, to Missy, to Patty, to those who helped clean up. It couldn't have happened without all of Hannah's Helpers!

Her oxygen needs have increased a bit since the last treatment. She was scheduled to have another steroid infusion today, but it was cancelled because the clinic did not have a doctor on-site which they require when giving Versed. We are considering when to re-schedule. Unfortunately, we haven't seen the desired response from the steroids, which makes it difficult to continue to put her through the treatment. We are really in a difficult position of choosing what to do, if anything.

Please continue your prayers for Hannah.
God Bless

Wednesday, February 17, 2010 12:38 AM CST

So, the steroid infusion went pretty well. However, she woke up about 4am, and couldn't get comfortable again. So she never went back to sleep. About 6am, I realized this was going to be a long, long, day. Hannah did have some nausea in the morning and had a pretty rough day with her breathing fits. I think a combination of the nausea plus the anxiety of being in the hospital plus being extremely tired, made for a long day. We spent most of the day waiting, and waiting. The AI (Allergy/Immunology) docs didn't round until about 1pm. We were concerned about whether to proceed with the IVIG infusion, because of Hannah's condition during the day. But we decided to try and press on. The AI docs said the need some blood work and the blood had to be taken before the IVIG infusion. We couldn't get any blood return from the IV, which meant a butterfly stick. We attempted that around 3pm and Hannah went sideways. As soon as she saw the lady with the cart, she knew. She became very agitated, started coughing and dry heaving. We sent the lady away and decided we would again need some versed on-board to try again. Which we did, about 6pm, and it went much smoother. Then came the nurses shift change and because they needed to monitor Hannah very closely for reactions, they didn't want to start it until after shift change. So...about 9pm, the IVIG infusion started. And because she had never had IVIG, they wanted to run it very slowly, over 12 hours. The good part of it was that Hannah feel asleep just before the infusion started and she stayed asleep through almost the entire infusion, with no adverse reactions. Monday morning, she woke up in a great mood, full of energy and no nausea. So then we just had to wait for the docs to let us out, which they did about noon. I took Hannah home to daddy's house. She ate some nachos & cheese (which have become her favorite, along with a taco) and some spaghettiO's. However, in the early evening, she had a tough time and didn't eat any dinner. Our neighbor friends came over some ice cream cake for my birthday. And although Hannah was excited about having a little party, she wanted no part of the cake. The rest of her evening went pretty well. During the night, I tried giving her a pedi-a-sure feeding at a very slow rate to see how she would tolerate it. I'm glad to say that she didn't have any nausea when she woke up. She was actually hungry for...you guessed it, nacho chips & cheese. So, we'll see how her day goes today and hope that it was as good as yesterday.

We are planning the special wedding for this Sunday (since she wasn't able to be at the original). It will be a much more casual event, but we will rent a limo, and she will get to wear her dress. Everyone has been so supportive and helpful to pull this together. I just hope she is feeling up to it and will be able to enjoy it.

Please pray that she will feel improved as we go forward.

Sunday, February 14, 2010 10:58 PM CST

Happy Valentine's Day!!! Much Love to all of Hannah's Helpers!

As is sometimes the case, plans do not always work out. On the way to get her steroid treatment on Friday, Hannah had a major coughing/vomit episode. So, we did not feel she was in a place to go through with the infusion. We did meet with Dr. Kriseman to discuss Dr. Fan's treatment plan. It was another difficult discussion. Dr. Kriseman has never used IVIG (intravenous immunoglobulin) before on any of his patients. So, he wanted to bring in the Allergy/Immunology docs because they are more familiar with administering IVIG. So we left with the plan to come to the hospital and be admitted on Monday. Get IV access, give the steroids and IVIG infusions, monitor her reactions (if any), and go home. On Sunday, Dr. Kriseman called to confirm that we were still ready to proceed with the treatment so he could start making the necessary arrangements. Then the hospital called to say that they had Hannah's room ready. We weren't expecting that on Sunday, we were supposed to go in on Monday. Anyway, we decided to go ahead and get admitted Sunday night, about 7:30p. Her friends Kayla & Jacob came up for a visit which she enjoyed. We got the IV in without incident, with a little help from some Versed. We let Hannah put an IV in her Webkinz and that seemed to help ease her anxiety too. The steroids got started a little bit after 11p. Monday should be the consult with the Allergy/Immunology docs and IVIG infusion. If all goes well, we're hoping Hannah can go home Monday afternoon. But, they may want to keep her overnight to make sure there are no reactions. That is the plan. Whether or not all will go according to plan is anyone's guess.

Hannah's been a bit up and down. Friday night, after her episode and a nap, she had good energy and was eating. Saturday, she was weak and lathargic. Sunday, she started out pretty low, but then perked up by midday. She kind of has the cycles of up and down. She did have some more nausea on Saturday and Sunday. I really thought we were making some headway in that regard. It might be the new formula, it might be something else, it might be nothing we can control. But if we can't get the nutrition to stay down, she won't have the strength to fight.

I forgot to mention a couple of things in my last post.
We did get to go to the Museum of Natural Sciences while we were in Houston. Hannah liked the big dinosaur skeletons and they had an amazing butterly "rainforest" with thousands of butterflies flying about. One almost landed on Hannah, but not quite. She was not feeling 100%, but she tried to enjoy it and I think she did a little.

We've also decided to pull Hannah from school. Unfortunately, her medical condition requires almost constant attention. Mrs. McSpadden has been wonderful. But she is a teacher not a nurse. And Hannah was having difficulty being able to keep her focus and she had some incidents of vomitting in class. That embarasses Hannah and I'm sure makes the other children feel uncomfortable too. We think this is best for now.

We've also decided to stop the growth hormone shots. The steroids will negate any impact they might have. And Hannah had become more anxious about getting the shot. With all that she is going through, she doesn't need that. We now have much bigger issues than not growing.

The past few months have been very difficult for Hannah and for us. Watching her struggling to breath and vomitting, it's just heart wrenching. The past week has been one of the toughest we've had on this long journey. I'm afraid there are very difficult days ahead for my precious one. She's an amazing girl and she proves it every day. She is my light.

Please pray that this new treatment will bring her relief.

Friday, February 12, 2010 11:45 AM CST

I apologize that I have not been able to update sooner, but as you can imagine, the trip to Texas was exhausting, both emotionally and physically. But, we are back home from Texas!!! And let me say.....It's good to be home!!!

We started out from GrandmaD's house on Saturday morning and drove to just outside Baton Rouge and stopped for the night. The next morning we got on the road about 10am and made it into Houston about 4pm. (Hannah did well both days. No nausea! Of course, we did have some meds on-board to help.) She played her DS and watched DVDs and did some coloring to fill the time in the car. She is a proven road warrior!

Monday was a very full day. We had to be at the hospital @ 7:30am to start the day with a butterfly stick. NOT Hannah's favorite thing, but she did great. Next we had a lung function test. Then we had our consult with Dr. Mallory, lung transplant specialist, for about an hour and a half. We also had a dietician consult which was very informative in explaining how the nausea is directly related to the lung issues. So, we started her on a new med to help with motility (movement of food out of the stomach into the intestines). That seems to be helping. On the way back home, Hannah actually was hungry and requested�..tacos! So we stopped each day at Taco Bell and she ate a taco and some nacho chips, more than I�ve seen her eat in a long time. We will also be trying some new formulas to feed via G-tube. Hannah also had another walk test, which she did finish, but was very tired at the end. Again, it showed that she de-saturates with any physical exertion. That ended our day at the clinic and we headed back to the hotel where we chilled out in the room.

Tuesday was our consult with Dr. Fan, interstitial specialist. I spent almost 3 hours talking with him. He believes that Hannah has advanced lung disease on different levels. His experience with complex lung disease is well established. He explained how the pathology of the biopsy (from November) showed some inflammation with a lot of fibrosis (scarring) and vascular damage. The fibrosis is not reversible and that is what is causing the decreased gas exchange. (Her blood work showed elevated levels of carbon dioxide.) He did recommend a treatment plan that he has used with other patients with some success in slowing down the progression. Of course, there are no guarantees of anything. But it seems to be a reasonable approach of trying to help without doing harm. He suggests steroid treatments once a week to be combined with another agent, IVIG, once a month. Although the IVIG is not necessarily experimental, it is generally not used in pulmonary cases, except the most severe. She will be getting a steroid treatment today. Then we will meet with Dr. Krisman to discuss Dr. Fan�s treatment and how to proceed. We may have to consider putting a pic line in Hannah�s arm so that a new IV doesn�t have to be placed every week. Because Hannah has extremely high anxiety over having IV�s put in. So, obviously, once again, we have some very difficult decisions to make regarding Hannah�s treatment and balancing that with quality of life. We will remain hopeful that this new treatment plan will bring her some relief.

I don�t think that, at this time, we are considering lung transplant as an option. She has endured so much in the last 6yrs. Her spirit is still amazingly strong, but her body is not. And as we learned, lung transplant is the most difficult of organs to transplant. And the hospitalizations and drug regimens and risks, etc. are all very intense.

Thank You to all of Hannah's Helpers for the thoughts and prayers for our long trip.And to my friends Norma and Michele for their generous help with hotels on our trip. And to Kathy's Dad for his generous gift that paid for all the gas. And to Missy for making Hannah's blanket and making cookies for dad. And to my wife, she was such a tremendous help on the trip, and good company too (32 hours is a long time in a van)!

Please continue to lift Hannah up in prayer. Only God has the power to cure her and make her whole.
Peace & Strength

Friday, February 5, 2010 12:03 AM CST

Hannah has been having increased nausea. We're not exactly sure why, but we have been giving her zofran and it seems to help. Amazingly enough, she has had some appetite. Sometimes though, it comes right back up.

We will be leaving tonite for Texas. We'll stop at GrandmaD's house on the way to visit and spend the night. Then head out Saturday. Not sure how Hannah will handle the trip, due to the nausea. Hopefully, it will subside. I thought about cancelling the trip and re-scheduling. But if we can make it through, I'd like for her to see the lung specialists sooner rather than later. One thing for sure...it will be an interesting ride.

Hannah did go to school 3 days this week. She does seem to enjoy it, once she gets there. I feel bad that she misses out on some of the funner things to do. Unfortunately, her life is full of unpleasant things. And even more unfortunate, I can't seem to do anything to stop it.

Please pray for a safe trip to Texas for us, and that her nausea will subside and that the docs in Texas have some insight on how to manage her better.

Thank you for your continued prayers.

Monday, January 25, 2010 5:21 PM CST

I know it's been a bit since my last update, my apologies.

Hannah is stable. However, she has had some rough days over the last couple of weeks.

She had another dose of steroids on Jan. 14th. She had terrible anxiety about getting an IV. She got so worked up, she vomitted. But we continued with the treatment. Unfortunately, we saw very little improvement. She also had a 6 minute walk test during which they monitor her oxygen saturation. It showed that her saturation decreases dramatically with any exertion, including talking. This shows that her lungs are not functioning well, which we kinda knew. She continues to have coughing fits which sometimes cause her to vomit. But even if they don't, they are scary as hell. We have to crank up her oxygen drastically to get her through this, but it can still last 10-15min.

The feedings are going a bit better. Unfortunately, she does not tolerate the very high calorie mix...at all. So, we are still using a combo of pedi-a-sure and home mixtures. Her weight had gone up a bit to 29.5lbs, but this weekend, she was back to 28lbs. It's a very balanced line when giving her feedings. Try to get in too much, and it comes back up in a coughing fit.

We have confirmed Feb. 8th at Texas Children's for a lung transplant evaluation and consultation with interstitial specialist, Dr. Leland Fan. We were planning on flying. However, due to her increased oxygen needs and airline changes in supplying oxygen to passengers (meaning they don't), we will be making a road trip to Texas. I feel it is the safest thing for her. One of her coughing fits, at 30,000ft, with limited oxygen would not be good. It will be a long road trip, and I'm not exactly sure what we will get out of it. But, as I said before, she deserves to be seen by the best, and that's why we are going. Texas Children's is one of the largest pediatric pulmonary programs in the world. I guess everything's bigger in Texas, right?!

We are still trying to keep her in school as much as she can handle. We have a new little oxygen maching that allows her to stay all day, if she can. And sometimes she can. And she seems to enjoy it. Sometimes, like today, she goes, and by lunch, she's not in a good place and her mom picks her up. I think we will have to return to just mornings with an occasional full day if something special is planned.

She had a pretty good weekend at dad's house. GrandmaD came down to visit for the weekend. Things are pretty low key as we stay close to the house. We played some games and did some puzzles. Hannah loves her DS and loves to play with her neighbor Kayla. On Sunday, we went to our neighbors for ribs, made especially for Hannah. She took a couple of bites, but that was about it.

We are doing our best to make the right decisions for Hannah. These are complex issues, created by the decisions we made during her cancer treatment. The strong chemo, stem cell transplant, and radiation have all left her body in a severely compromised state. I really don't know what lies ahead for Hannah and for us. It will be a difficult year, no doubt. Please remember her in your prayers.

Wednesday, January 6, 2010 5:59 PM CST

Happy New Year!!!! (Just a week late!)

It is hard to tell what 2010 will hold for Hannah and her family. We pray that it will bring healing to her lungs so that she can get off oxygen and run like a little girl should. For now, she remains stable on her oxygen. Her coughing fits seem to have diminished in frequency, that's good. We are still trying to adjust her G-tube feedings so that she doesn't have nausea from them. The GI doc gave us some Very High Calorie mix to try, but Hannah does not tolerate it well, and it usually comes back up. Her mom has made a mixture that seems to stay down. So, we've been using that along with the pedi-a-sure. I feel so bad for her when she's feeling ok, then we give her a feeding and then she has nausea. It's no fun for her, that's for sure. But I think we're closer to getting the feedings "dialed in".

She did go back to school on Monday and did ok. She only goes for a couple of hours in the morning, till the class breaks for lunch (that's also about the time her oxygen tank gets empty). We've been concerned about her falling too far behind because of all the school she's missed, so we've arranged for some tutoring help. Her teacher says that she is doing ok and we want to keep it that way.

She had a follow-up with the endocrinologist for the growth hormone. We knew there hadn't been any growth because she's been fighting these lung issues since we started the growth shots. He agreed to continue the shots.

We have been in contact with Texas Children's. We are going to try to get over there sometime in February if everything can get aligned. I'm still not sure exactly what to expect. We are going for a lung transplant evaluation to even see if she would be a candidate. The group there is one of the best in the country for interstitial disease. We are hopeful that they can help us manage her disease better and stay off any transplant list. Unfortunately, I do not think they have any "silver bullets" out there. But I want her to be seen and treated by the best.

Please continue your prayers for Hannah and all the little warriors.
God Bless

Monday, December 28, 2009 4:13 AM CST

We hope you all had a wonderful Christmas and send best wishes for the New Year!

Hannah had a great Christmas Day! GrandmaD and her cousins (also known as "the girls") came down and spent the nite, so we had a full house. Of course, there were lots of presents under the tree for Hannah. Santa was a very busy man! He brought her a DS and some games as well as lots of arts & crafts and clothes. She always wants to look "fashionable". Later in the day, we went for Christmas dinner at Patty's (sister-in-law/Taylor's mom) house. We had a great big Honeybaked ham. Hannah actually ate a couple of bites of ham and some cranberry sauce.

On Saturday, we did a little shopping. Hannah wanted a carrying case for her DS, which she bought with her own money. Then she got to spend some time playing with Kayla, our neighbor. Between the both of them, they had lots to play with. Kayla has a DS too, so they sat next to each other and sent messages back and forth through the DS. Seems silly, but they enjoyed it. In the evening, we rode around some different neighborhoods looking at Christmas lights.

Sunday was pretty much a "chill" day. It was pretty chilly and damp outside, so we stayed inside and watched the Bucs actually win a game and played with all our new stuff!

She continues to need oxygen all the time and her need seems to be increasing a bit. She can have a coughing "fit" out of the blue. These are very scary to have to watch, and they wipe her out. The breathing treatments don't seem to be as effective as they were in helping with them. Her appetite is pretty much nill. Once in awhile, she will eat some spaghetti-O's, but that's about it. So, we are doing the pedi-a-sure feedings quite a bit. It's a bit of a balancing act, trying to time the feedings so she still may eat something, but I think she's tolerating the feedings pretty well. But we have to be careful of not giving too much too fast, or it comes right back up.

We will probably be going to Texas Children's in early 2010 so they can evaluate Hannah. Dr. Mallory and his group have alot of experience and we are hoping that they can help Hannah. Our pulmonary doc here, Dr. Kriseman, has consulted Dr. Mallory personally, and feels we should make the trip to see him. It's not exactly a good thing when one specialist wants you to go see another "even more" specialist. But we will continue to be positive and do what must be done to help Hannah get better.

She continues to be an inspiriation to me, and anyone she meets. She has an inner strength and beauty, that defies her physical appearance. She has an amazing spirit that shines brightly, and does not quit, despite what she goes through. She humbles me.

Please, please, pray for Hannah. Pray that the Lord will heal and restore her lungs.
Gob Bless.

Thursday, December 17, 2009 9:17 PM CST

It's hard to believe that Christmas is only a week away.
Hannah is pretty excited, to say the least.

She did have the IV steroid treatment on Wednesday and today. The infusion itself takes about an hour, plus another couple of hours of waiting for this or that. We got some time with Dr. Kriseman today. He wants to see how she does with 2 days of steroids and on Monday she'll start on zythromyacin for inflamation. We certainly hope this works better than the chloraquine.

She seems to be tolerating the feedings ok. Although we are still trying to adjust the times and rates and to get the calories into her. She weighed 28.0lbs last Friday. Tonite, she weighed 29.5lbs. So, it looks like she gained 1.5lbs in a week! Hopefully, this trend continues.

So, she is stable. Still on oxygen, but having pretty good spirits. Friday is her school Christmas party and it looks like she will be able to attend. I'm certainly glad about that. Then she will be with her mom for the week. They will be visiting family for the holidays. She will come back to dad's on Christmas Eve.

Thank you all for your continued prayers. God Bless.

Tuesday, December 15, 2009 9:46 PM CST

Hannah spent the weekend at Dad's house.
Needless to say, we had a pretty low key weekend. Friday, after getting home from the hospital, we had a visit from the home health care nurse. She showed me how to use the feeding pump and discussed the different feeding methods. Hannah seems to be tolerating the feedings pretty well. We are still adjusting the feeding schedule, trying to make it as unintrusive as possible. A "feeding" is basically an 8oz bottle of Pediasure which is delivered via a pump over an hour. The Pediasure has about 340 calories per bottle and they want her to have about 4.5 bottles per day, about 1100 calories. We still want her to eat and drink by mouth, but the Pediasure is very filling for her. So, we are trying to adjust the schedule to find what fits for her.

Friday night, we decorated our Christmas tree and put up our decorations in the house. Hannah loves the ornaments and all the lights. She wrote her letter to Santa; Nintendo DS some games, clothes, LIV Barbie dolls, Crayola Light Brush, Grown-up Dora, Fashion Design Center...the list goes on and on. Kathy's son, Robby, and his son, Michael, came over as well for the decorating and dinner. That is the home photo, the Douglas Family (and Rocky, our dog).

Saturday was a chill day. We went to the pet store and bought a new fish and a snail. Then we went to our neighbors, Kayla's, for some playtime and dinner. After dinner, the girls watched the Hannah Montana music. During one of the songs in the movie, Hannah and Kayla got up and danced and sang to the song. They were so cute. I took a video of them on my phone. As soon as I can figure out how to get it off my phone, I'll post it.

We actually had planned the "Special" wedding for Sunday, but decided to cancel it. Hannah was clearly not in a place to do it and enjoy it. So, we will re-schedule it, again, probably in late January. But GrandmaD and cousin Jessica came down to visit anyway. We spent the day playing with Jessica's new puppy, Athena, and doing puzzles and play-dough and blowing bubbles followed by a spaghetti dinner. Although Hannah opted for spaghetti-O's instead!

We kept Hannah home from school on Monday, just to be sure. But she did go on Tuesday and did pretty good. She has missed so much school. We try to keep up by doing the homework, but it's not the same. It's amazing how much work they have to do in 1st grade! We hope that after the holidays, she will be able to go on a more regular basis. I also think the social aspect is good for her too. But sometimes it's difficult to tell whether or not she should go to school.

Her IV steroid treatment will be on Wednesday and Thursday, maybe Friday too. Her breathing is stable, I guess. She is still on oxygen, all the time. And she is still breathing very fast and shallow. Please pray that this treatment will have a good response and will last her awhile. We still have not heard back from the docs at Texas Children's. Hopefully we will by the end of the week.

Please continue your prayers for Hannah and for all the little warriors.
God Bless

Friday, December 11, 2009 10:29 PM CST

Hannah is home!!! And she is so glad!
The new home photo is her being very silly in the hospital.
The procedure on Wednesday to put in a G-tube (tube that goes directly into her stomach) went well. It was a very short procedure, about 20min total. So now she has a tube, about 8" long that comes out just a bit above her belly button. She came out in pretty good spirits. As soon as she got back to the room, she started playing her video game. She did have some moderate pain, but tylenol helped. Thursday morning, she was hungry and ate some spaghetti O's by mouth, then had her first feeding through the G-tube, and another feeding later on. All went well with no vomitting. Basically, she will eat normally, or whatever she is willing to eat, and we will supplement that by feeding pedi-a-sure through the G-tube. The nutritionist wants her to get 1100 calories/day, that's about 4.5 cans of pedi-a-sure. The hope is that by supplementing her eating with these calories will add some weight, give her some strength, and maybe help with the growth too (at least we can hope). This morning, we waited anxiously, with our bags packed, for all the docs to round and give their OK for us to go home. We finally got out around 1pm. She is moving pretty gingerly and the site where the tube comes out is still very sensitive. But I have to say, she seems to be pretty comfortable with it. She helps, actually insists, on cleaning the site herself and she works the clamp when it's time for medicine or feeding. The next couple of weeks we have to keep the site very clean to prevent infection.

On the pulmonary side of things, she is pretty stable on 1L/min of oxygen, which she needs to be on all the time. We are scheduled to get the IV steroids on Thursday and Friday of next week. We hope that she will continue to maintain till then.

Thanks for your continued prayers for Hannah.
God Bless

Wednesday, December 9, 2009 8:04 AM CST

UPDATE: The surgery to put in the G-tube went very well. It was a very short procedure and Hannah did great. She woke up in pretty good spirits. When we got back to the room, she immediately started playing her video game. We tested out the tube by putting a couple of meds in it. Worked great!

Hannah has improved some. Tuesday was the first day that she did not vomit. She didn't eat much, but what she did eat stayed down. However, she has lost so much weight during the last couple of months, it was suggested that she have a G-tube. A G-tube goes directly into her stomach and we will be able to supplement her eating with much needed calories. I have to say, I had to warm up to the idea. But feel it will help her long term. Her eating has never really been outstanding. And this will take some of the frustration out of dinner time, and lunch time, and breakfast time. The procedure is today at 1pm and is a routine one. Please pray for no complications. Child life brought in a puppet to show her the G-tube. Hannah says it will be a "piece of cake".

It's also been decided to hold off on the steroids. Her oxygen sats have been pretty good while we've been in the hospital. Granted, she's not been exerting too much. But she hasn't been having coughing fits either. So, we're going to see if she can make it till next week. The steroids have a big down side.

I imagine we will be in the hospital for at least the next day or two. Hopefully out by the weekend. GrandmaD is coming down and we still have to decorate our Christmas tree!

Please continue your prayers for Hannah and all the little warriors.
God Bless

Monday, December 7, 2009 4:30 AM CST

Well, we spent our Sunday in the ER for dehydration and got admitted too.

Hannah continued to have bouts of vomiting through the week. On Friday, we cut the dose of chloroquine in half and gave her something for the nausea. But about an hour after the dose, she vomitted. So, we decided to stop the med altogether. She still had bouts of vomitting on Saturday. Needless to say, it's very difficult to maintain when you have that much output and very little input. Hannah did not want to eat anything, because she knew she would vomit. She was a little better on the liquids, but still not enough intake. Sunday morning she looked pretty bad and she had not peed since 2p on Saturday. So her mom brought her to the ER. They confirmed she was dehydrated and started her on IV fluids. They also ran some tests to make sure the symptoms weren't from an infection. They aren't sure these symptoms are from the med alone. So far, all results are negative, but we're still waiting on stool cultures. During the week, it was decided to go ahead and have the steroid treatment on this Monday, as an outpatient. Now, we'll do it as an inpatient, at least the first day. We spent the entire day in the ER, waiting for a room. Hannah was very patient and in pretty good spirits. We watched TV, played cards, did a puzzle. She took a long nap from 5-7p. When she woke up, she ate about half a taco, and kept it down, Yeah! We finally got to our room about 11p. Hopefully, she will tolerate the steroids well and they will help with the breathing too.

So, we didn't make the Sunshine Challenge. But Thanks so much to all who donated in Hannah's name. Thanks to Kris Kruder for raising money in Hannah's name too! I think our combined total was almost $1,000!!!

Not sure what our game plan will be after the steroids. I have contacted some pulmonary docs in TX for a secondary consult. We just want to make sure we're doing everything we can to address the bronchiolitis. I'm hoping those docs can work with these docs and we can get her back on track soon.

Please continue to pray for Hannah and all the little warriors.
God Bless

PS - I forgot to add the link to donate to Hannah's Giving Tree for Lunch for a Cure! Please Donate now and add lots of ornaments to Hannah's Giving Tree!!!

Thursday, December 3, 2009 4:19 PM CST

Hannah went to see Miley Cirus Tuesday night, in a box suite no less! She enjoyed it...dad, not so much. But it was good to see her clapping and singing. The new home pic is at the concert, I realize that it's not the best but the stage is behind her. Thanks so much to my new sister-in-law, Patty, for thinking of Hannah and getting the tickets for her. It was a great surprise for Hannah!

Now the medical stuff. Her oxygen needs increased a bit and her cough came back a little on. So, we went to see Dr. Kriseman on Tuesday afternoon, the same day of the Miley concert. Of course, when we got to his office, she was looking OK. But he started her on chloroquine to see if that will help her oxygen saturations till we get to the next steroid round. So, we left his office, went to the pharmacy and had to wait for them to compound the new med. We finally got it a little after 5p, headed home, ate some Chic-Fil-A, 3 nuggets. Took the new nasty medicine, which she gagged on, got changed into Hannah Montana gear and headed to the concert, which started at 7p. Luckily, we got to park in the garage right next to the Forum. I carried Hannah and her oxygen tank to the Forum arriving at 6:55p. She was so excited seeing all the people and limos.

Wednesday, she was a bit tired at school. When she got home to her mom's, she was very tired. She also had a couple rounds of vomiting and diareha, wonderful side effects of the new med. But Hannah has lost about 5lbs during the last few months, so she doesn't have a lot extra to be giving up. So, we're concerned about dehydration.

Thursday, we kept her home from school. She did ok in the morning. But then got tired and wanted to lay down, which is not like Hannah. She took a long nap. When she got up, she had a light lunch and a bit after, the new med. A couple hours later, she vomited again and felt tired again. We hope this is adjustment to the new med. But it's hard to watch.

We are trying to be patient, but this is a frustrating process that is agonizing as well. Hannah has endured so much in her fight against cancer, now it appears we have a different battle on our hands. She has tremendous inner strength, but her body looks so frail. She never ceases to amaze me by how she takes all this crap in stride and still can pop a smile. I just want to get her better. But like the cancer, there's nothing I can do. That, my friends, is the rub. That, is what keeps me awake at night. That, is the maddening part of it all.

Don't forget to donate to the Hannah's Helpers Team for the Sunshine Challenge. It's coming up this Sunday! I hope Hannah feels well enough to take her. Please click on the link above this journal to donate. Thank You!

Please continue to pray for Hannah and all the little warriors.
Gob Bless!

Monday, November 30, 2009 4:51 PM CST

Hope all of you had a wonderful Thanksgiving!!!

Hannah spent the day with her mom's family in Lakeland. She did eat some turkey and cranberry and pie!

Unfortunately, the good response to the steroids seems to be fading. Her oxygen needs have increased to 1L/min and her cough has come back a little. So, we'll have to see what Dr. Kriseman wants to do. There is another drug that we can use to get us to the next round of steroid treatment later this month. It's disappointing that the good effects didn't hold as long as we'd hoped.

Her spirits are pretty good. She went back to school today, just for a half day. Her mom talked with her teacher, Mrs. McSpadden, to see if she would be comfortable with Hannah in her class with the oxygen tank. She said she would. She is not only a great teacher, but has been such a supporter of Hannah in so many ways.

The "Special" wedding is in the planning stages. I think it will be on Dec. 13th. We'd like to do it earlier rather than later and this date seems to work for most. It will be a scaled down version. We'll have a small ceremony on the beach, so she can wear her dress and ride in the limo. Our hope is to make it a day about her.

Once again, I am going to ask for your help.
The Pediatric Cancer Foundation presents the Sunshine Challenge to raise money for pediatric cancer research. Please click the link to make a donation to the Hannah's Helpers Team. With your help, we raised over $3,000 last year. This is a great organization that has always had a special place for Hannah. This is the same organization that puts on the Fashion Show and the Fisherman's Ball (Hannah was recently honored at this event). On top of that, they have funded clinical trials for new treatments. Your money will go directly to helping find a cure!

Please, continue your prayers for Hannah and ALL the little warriors!

Tuesday, November 24, 2009 7:03 AM CST

I am sorry I have not been able to update for the past week, as I was out of the country, and there was no internet access. I enjoyed the Honeymoon, but my mind was definetley also on Hannah and it was hard being away from her.

Hannah was released after her surgery last Monday, 11/16.
She recovered very well from the biopsy. Unfortunately, we did not get any preliminary results till Wednesday which confirmed bronchiolitis obliterans, an active interstitial lung disease and in addition some interstitial fibrosis. She was admitted to All Children's on Thursday, 11/19, for pulsed IV steroid treatment for 3 days. She went home on Saturday. On Sunday, her mom said she really seemed to improve with her energy and oxygen saturation levels. We are happy to see the positive response to the steroid treatment. One good side effect, is an increase in appetite, which we like. But steroids have many bad side-effects that we don't like, eg; bone loss, possible diabetes. We have a follow-up with the Dr. Kriseman, the pulmonologist, on Wednesday. We are still waiting for final pathology reports from the lung specialists at Baylor, hopefully we will get these when we meet with him.

This lung disease will require more IV steroid treatment. It is a very serious condition with long term effects. It may not be curable, only treatable. Only time will tell.

We again ask for your prayers for Hannah, that she has the strength to fight through another battle.

Sunday, November 15, 2009 7:09 PM CST

Hannah was admitted to All Children's Hospital on Thursday.
Last week, she had been having coughing attacks that would cause her to vomit of have dry heaves, even while she was on oxygen. At times, this was scary to watch. So we called the pulmonologist to take a look at her. We took her to the ER and he admitted her to do the lung biopsy. This was not what we wanted to hear! But nothing definitive had come back from the last round of testing. And to complicate matters, her dad was to be getting married on Saturday. Having this biopsy done on Friday would certainly mean should would not be able come. But we decided that we needed to do it sooner than later and get some answers to get a treatment plan to get her some relief. It was definetly one of the toughest decisons to date. So...she had the lung biopsy done on Friday. It is a pretty major procedure with some serious risks. But as she seems to do, she came through the surgery better than anyone expected. Of course, she had some serious pain afterwards and was on morphine for most of the night. On Sunday, they removed the chest tube, which was a great sign and relief to her pain. Now, she is sore when she is moved. We hope to have preliminary results on Monday. They also sent samples lung experts in Houston for analysis. Depending on these results, she may have to stay in the hospital for treatment.

I did get married, as planned, on Saturday. It was a beautiful day, with a beautiful bride. Hannah not being there left a hole in an otherwise perfect day. She has been so excited, for so long about this wedding. We have decided to do another "special" wedding for her when she is better, so she can wear her dress.

Please continue to keep Hannah in your prayers.
God Bless!

Tuesday, November 10, 2009 6:45 AM CST

Sorry for the lack of updates, but things have been a bit hectic.

Hannah is still having the breathing issues.
After our visit to the pulmonologist, Dr. Kriseman, he wanted to check her oxygen saturation levels (O2 sat) while she slept. As we suspected it was low. So, he ordered her some oxygen support for when she slept. It helped her O2 sats, but as soon as we took the oxygen off, her sats dropped. When we told him this, he wanted us to bring Hannah in immediately, that was last Wednesday. Her mom picked her up from school and took her to see Dr. Kriseman. He admitted Hannah to All Children's Hospital for some diagnostic testing. On Thursday morning, she had a bronchoscopy (video camera down her throat)and lung lavage (they flush the lungs with fluid and collect for analysis)and a pH probe inserted into her stomach (reflux). She recovered pretty well and spent most of the day resting in her room. We did get a hall pass to go outside for an hour or so. She was on oxygen and IV fluids for most of the hospital stay. On Friday morning, she had a swallow study done to see if she is aspirating into her lungs when she eats or drinks. On one of the swallows, they noted that she was. Over the weekend, we waited for test results from the lavage.

Hannah is pretty much needs the oxygen all the time. At home, she is attached to a oxygen machine. She doesn't like it, who would, having a tube in your nose. But she has been such a trooper with it. We give her 30-40min breaks off the machine, but her sats go down quickly.

Dr. Kriseman called on Monday, he believes, but not 100% certain, that aspiration is what is causing the lung issues and that this has been happening over a long period of time and probably due to one of the chemo agents she had during cancer treatment. To test this theory, we will have to add a thickening agent to any liquid she drinks. The problem with this is, she doesn't want to drink anything with this stuff in it....except Sprite! So, I guess she'll be drinking Sprite for the next couple of days. If this is the cause, he thinks we will see some improvement fairly soon. We certainly hope that we do.

So Please, pray for Hannah. Pray that this helps her and helps the docs figure out what's going on.
God Bless.

Wednesday, October 28, 2009 2:40 PM CDT

Halloween is almost here...and Hannah is very excited! She's going to be SuperGirl! (We already know that she is, now she'll just have the outfit.)

This past Friday, I took her to the Kid's Fishing Derby. A great event sponsored by Steve Yerrid and the Pediatric Cancer Foundation. There were about 100 kids in attendance. There was a small parade and facepainting. Then the fishing. Hannah caught 3 pinfish! She loved it. She would pet them and say "Bye!" before we threw them back in the water. Afterwards, they served a nice lunch and recognized each kid with a medal and goodie bag. Hannah's Grandma & Pop-Pop were there too. That night was the Fisherman's Ball, during which they honored Hannah, and two others, for their courage fighting cancer. Hannah was much younger than the other two. The video they made was touching. I have not heard yet how much the event raised, but I'm hoping it was alot!!

We actually spent the day in the ER on Thursday. Hannah's pediatrician thought diabetes might be the underlying cause of her breathing issues, and he wanted a specific blood gas test. Fortunately, it is not diabetes. Unfortunately, we didn't seem to get any clearer on what is going on with her breathing. With Hannah's history, most docs knee jerk reaction is nb. We really don't think it's that. She had a clear PET in August, along with good blood and urine tests. But we have to get our onc docs to sign off that it's not disease. We may have to do another PET to convince everyone. We're still waiting to see about that.

Hannah actually had really good energy at the Fishing Derby and through the weekend. But she was on steroids during that time. Her breathing seems a bit more labored now, and still shallow and rapid. We will be seeing the pulmonologist tomorrow. I truly hope he can do something to shed some light on the problem. We seem to be going around in circles on this one.

Check back soon. I will post Halloween pics and I'll try to post video from the Ball.

Please continue your prayers for Hannah and for ALL the Warriors! God Bless!

Monday, October 19, 2009 4:40 PM CDT

Wow! Time has flown by. I just realized it's been almost a month since my last update. My apologies.

Hannah has still been struggling with some breathing issues, probably related to the pneumonia in August. Her breathing has been rapid and shallow, with a bit of a "hack". So, she went to her pediatrician today, because we couldn't get in to see the pulmonologist. He put her back on breathing treatments as well as an anti-inflammatory steroid. We hope that will quickly resolve the bulk of the issues. However, he said she may have to remain on some of the treatments for a couple of months to completly resolve. We certainly hope it will. The growth hormone shots are getting easier. She barely even raises an objection now. Who knows, maybe in a couple of months, she'll be able to do it herself?! Maybe by then we'll see some results too!

She has been going to school and doing well. We just got her report card for the first quarter. She is reading well, and doing "ok" in math, but needs some work on her speed. Her teacher noted that she has trouble focusing and "likes to talk". Hmmmm, really?!

She has also been going to acting class on Saturday. She is going to be a caroler, named Hannah, in an adaptation of "A Christmas Carol" that will be performed in December. It's really a cool class and she seems to enjoy it. So, we've been practicing her carols and her lines, and even a little british accent.

Some really exciting news, this Friday, as part of their annual Fishing Tournament Fundraiser, the Pediatric Cancer Foundation will be honoring Hannah and two other cancer kids with an "Award of Courage". Each year they honor three cancer kids as a way of supporting the kids and showing sponsors why cancer research is so important to finding a cure. They asked Hannah to do a video interview which they will show during the ceremony. I'm sure it will be a wonderful event and will take lots of pics. Please visit Faster Cure to learn more about the Pediatric Cancer Foundation and make a donation! This is the same organization that has the Cancer Walk and the Fashion Show that we participate in each year. They do Great work and have been so good to Hannah!

As always, Please continue your prayers for all the little warriors! They still need them, they are still fighting, everyday. God Bless!

Sunday, September 27, 2009 9:07 AM CDT

Well, we thought we got rid of the pneumonia. But Hannah had some symptoms "re-appear", eg. rapid & shallow breathing, and a cough. Not wanting to repeat an admission into the hospital, we moved up our follow-up appointment with the pulmonologist. I took her in on Monday, he said her lungs were clear and gave us an inhaler to take home. We also got a CT of her chest which showed some residual "stuff", due to inflammation. We dediced to get a second opinion and went to another pulmonologist. For the most part, he agreed that this was residual. And said it can take many weeks to totally clear, especially someone with Hannah's history and immune system. He gave us a different inhaler. She missed most of the week of school, but did go on Friday. Her class made an Apple pizza, which she enjoyed. By Saturday, she seemed to be doing much better and we pray that will continue.

We continue on the growth shots. She continues to not like getting them. But is getting a bit better. Please continue to pray that they work and don't cause problems.

We are still feeling the loss of my brother, Robbie. GrandmaD is coping well, but it has no doubt left a big hole in all our lives.

Thank you all for your continued prayers for Hannah and the little warriors.

Tuesday, September 15, 2009 9:44 AM CDT

I apologize for the lack of updates, but life has been a bit hectic.

First off, Hannah is doing fine. On Tuesday, Aug. 25th, we started on the growth hormone shots. She gets a shot every day for 6 days, then 1 day off and the cycle repeats. She is getting better about getting the shots, although, she gets a little freaked by needles (who could blame her). The doc is still doubtful they will work, but we'll see how it goes. So please pray that the growth hormones do their job and help Hannah grow and do not cause any adverse effects, ie relapse.

Then she developed a case of walking pneumonia and had to go into the hospital for a couple of nights. She was given breathing treatments and put on antibiotics and is doing much better now. We will follow up with a pulmonologist.

Then I had to be gone for a week because my brother, Robbie, died as the result of a car accident and heart condition. It has been a very difficult time, especially for GranmaD. Please pray for her comfort during this time.

On a more positive note, Hannah and I did a cooking class this past weekend. We made bread from scratch and risotto and chicken. Hannah had a good time and I learned a few cooking tips. The new home pic is Hannah with Chef Jason.

Hannah continues to enjoy the first grade. Evidently, her original teacher, Mrs. Shobe, found another job and left. So, Mrs. McSpadden, her teacher for kindergarten, came back out of retirement to teach Hannah's class. Hannah did love her and she is a great teacher.

As always, please pray for all the little warriors who are still fighting the beast.

Thursday, August 20, 2009 3:21 PM CDT

We got the PET results back...they're CLEAN!! Praises!!
Everything looked good, they did not the liver spots. But the blood marker came back good on those too. So, we'll be moving forward with the growth hormone treatment. Probably starting in September. Please pray that they do their job and make Hannah sprout up!

Hannah started the 1st grade on Tuesday. Her new teacher is Mrs. Shobe. There are probably 5-6 kids in this class, that were in her kindergarten class. So, she has some familiar faces around her. There's a bit more structure to the schedule. And she has her own desk. She has been very excited all week. She will also be taking some acting classes. She really enjoyed the play she was in during the summer. So, we'll see if she likes the individual class. She will also be taking some dance classes. Just for the excercise and fun! She will be quite busy.

It's hard to believe that Hannah is 7 and in the 1st grade. After the long journey that she has traveled, we know that we are blessed! But we still have a long road ahead. It is so good to see hear mature and grow mentally. It would be good to see her grow physically as well.

Please continue your prayers for Hannah and all the little warriors. And for GrandmaD who is home now following her hip surgery.
Thank You.

Saturday, August 8, 2009 9:34 AM CDT

Well, summer is almost over!
Hannah starts 1st grade on Aug. 18th. She is very excited.

She had a great time in Tennessee visiting her grandparents. They went out on the boat and went to Dollywood where she really liked all the rides.

This past week, she had acting camp. She enjoyed it very much. On Friday, the kids presented a play of Alice in Wonderland. Hannah was the mouse in the MadHatter's tea party. All the kids did a great job.

On Wednesday, Hannah will have some blood work done and a PET scan. Please pray for a clean scan. If everything looks clear, we will be having another appointment with the endocrinologist in September and will probably start growth hormone treatment. Otherwise, she is doing very well.

Also, please pray for GrandmaD. She had surgery to re-do her hip replacement, as it had "popped out" many times. She spent a week in the rehab hospital getting physical therapy and is headed home today.

Thank you all for your continued prayers.

Monday, July 27, 2009 12:08 AM CDT

Happy Birthday Hannah!!!

Yes, Hannah is now 7! We had a really fun vacation week. We headed to Orlando and went to Universal Studios. She really liked the E.T. ride and Dr. Suess land. There were some rides she was too short for. But otherwise she really had fun. She actually fell asleep around 5p, so we headed back to the hotel. On Friday, we just hung out at the pool at the hotel. A couple of friends were with us, so we had a little party in the hotel room, then back to the pool! On Saturday, we headed up to GrandmaD's for a family party with aunts and uncles and nieces. GrandmaD had balloons up and a cake and most important, presents!! Hannah really likes birthdays, so she had a great time. Again, it prompted me to reflect. Like to her 3rd birthday, which we was on our first trip to Sloan. And her 4th birthday, which again was spent at Sloan. The birthdays at home are so much better!

On Sunday, Hannah headed up to Tennessee with her mom to visit with her other set of grandparents for the week. I'm sure there will be more parties and presents.

Not much happening on the health front. Hannah is doing very well in that regard. We are still just getting our ducks in a row for the hormone treatment. Getting all the docs to weigh in with their thoughts. Most support the decision. We still have to make a definite decision, but that can certainly wait till after the birthday celebrations!

Again, Please remember all the warriors in your prayers.

Friday, July 17, 2009 10:53 AM CDT

Hannah is doing great!
She had dance camp this week and really enjoyed it. She wears her dance tutu and looks so cute!

We met with an orthopedic specialist yesterday concerning the noted mild scoliosis. She has a slight curvature of her spine. But the doc said growth hormone treatment shouldn't affect it in anyway. We will continue to monitor her spine with xray. We are still in the process of mulling over the growth hormone treatment, but tend to be leaning that way, I think.

Hannah's birthday is fast approaching, it is Saturday, July 25th. She is very excited about turning 7 years old! I will be taking a week of vacation with her next week. We are going to Orlando to stay in a hotel for 3 days and go to Universal. Some friends will be joining us there for a small party. Then we'll head up to GrandmaD's house for another party with the family. Then she will be going to Tennessee with her mom to visit her other grandparents.

I've added a few new pics to the Slide show. Check them out!

Please continue to pray for all the little warriors.

Saturday, July 4, 2009 8:47 AM CDT

Have a Safe and Happy 4th of July!!!

Hannah had a good week. She was had the first week of Fashion & Etiquette Camp. Each day, the girls did make up and dress up, arts & crafts. They had a pizza party and tea party. She really enjoyed each day. Yesterday, we went to see Ice Age 3. She loves going to the movies.

The antibiotics definetely have helped with the pneumonia. She still has a bit of a cough, but it is much improved.

Our meeting with the GI doc was informative. He belives that the spots are benign, but we will do some blood work to confirm. Unfortunately, there is no data on patients with these type of spots and taking growth hormones. So, once again, Hannah will be blazing the trail. We are still hesitant to start growth hormones, but it looks like it is the way we might go.

There are still many warriors that need your prayers, so please continue to pray for their healing.

Tuesday, June 23, 2009 7:48 AM CDT

Happy Father's Day to All!

Hannah's first week of dance camp was cancelled. She was disappointed, but there's another dance camp scheduled in July. She started VBS last week, but was only able to attend for 2 days, because she had a bad cough. We took her to the pediatrician, who said she had the beginnings of pneumonia. He started her on breathing treatments and strong antibiotics. She improved quickly, but still has the remnants of the cough. We were fortunate to catch it early. She's nearly back to normal now.

Over the weekend, GrandmaD and her cousins; Barb, Sharon, and Sharon Elizabeth, from PA, came for a visit. We went to the beach for sunset and to dig in the sand. Then we had a nice dinner at a restaurant on the beach. We really enjoyed the visit.

Today, we will be meeting with a GI specialist to discuss the liver spots. We're hoping he can add his input to what they are. We really need to determine this before we start growth hormone treatment. Which, we haven't definetely decided to do, but are leaning that way. On our June visit to the endocriniologist, she hadn't grown in the last six months. We discussed growth hormone therapy, and are proceeding cautiously. It's a big decision. Hannah will be turning 7 in July, and she is still the height of a 3-4 yr old. But we want to make sure we are doing the right thing, for her.

Otherwise, we hope to enjoy the summer. Hannah is excited about her camps. And of course, very excited about her birthday. The girl loves anybody's birthday, and especially hers.

Please continue your prayers for Hannah and all the warriors.

Tuesday, June 2, 2009 8:10 AM CDT

Hannah is a graduate!!!
The graduation ceremony was very sweet. The class put on a little show about friendship. Each child had a little speaking part. Then came back in caps and gowns. Afterwards, they served cake and cookies! I managed to make it through the evening without crying. But my mind did wander back to a time when I didn't know if we would see this day. I give thanks to God each day for the blessing of Hannah.

So, now school is out for Hannah. She has a busy summer schedule of camps: acting camp, dance camp, fashion/etiquette camp, VBS. Throw in some vacation time and I'm sure the summer will fly by.

Today, we will meet with Dr. Root, endocrinologist, for a follow up. He will measure her and we will again discuss growth hormones. There are some test results that we will discuss as well.

Hannah is doing great! This past weekend, she went to see the Hannah Montana movie. And we went downtown to the Taste of Pinellas where they have music and food from different restaurants. It's held right on Tampa Bay, beautiful. They also had some kid activities. It was an enjoyable afternoon.

Please continue to pray for all the little warriors. I learned of a new child this week, Danika. She's only 7 mos old and lives in FL. The family is trying to find a way to get her to Sloan. Please pray for this family as they begin their fight.

Monday, May 11, 2009 7:21 AM CDT

Happy post-Mother's Day!

Wow! I'm sorry that it's been almost a month since the last update, but in a way, that's a good thing. It means that life is fairly normal for Hannah.

Hannah will be graduating Kindergarten on May 22nd. Talk about a milestone, on so many levels. I know it will be a very emotional nite for us. But I will be so happy to see her in her cap & gown (check out new pic). She has really done pretty well in school. She is a little bit behind academically, so we'll work with her over the summer. But she is reading and counting and becoming pretty smart. (I will admit to some bias!)

She has finished her swimming lessons. She has several camps lined up for summer: Dance, Acting, Fashion & Etiquette, Vacation Bible School. So, she will be pretty busy.

On Tuesday, she will have some blood labs drawn for the endocrinologist. She will also have an x-ray to determine her bone-age and another x-ray to check for scoliosis. We have an appointment with the endo doc in June to again discuss growth hormone treatment and other post-treatment issues.

Please remember to pray for all the warriors. There are still many, many children fighting every day. Thank you for your continued prayers and support.

Tuesday, April 14, 2009 3:09 PM CDT

I hope all of you had a wonderful Easter!

Hannah enjoyed hers at GrandmaD's house. She woke to find the basket the Bunny left. And after we got home from church, she had an egg hunt, all to herself. (This was her 2nd egg hunt.) She liked finding the eggs with money in them.

We also enjoyed our trip to South Carolina. It was a bit of a drive, but she did real well. She colored, slept a bit, watched movies. She really liked seeing her friends, Jacob and Elizabeth. They colored eggs and had an egg hunt.

We got the scan results back, the brain and spine are clear! Praises!!! The liver still showed the "spots" and the largest one increased in size by 4mm. Hannah's mom met with the docs while we were out of town. One doc wants to do another biopsy, the other says to just re-scan in 2 months. I think we will all sit down and decide what to do. The origianl biopsy said "benign". But the fact that they are increasing is troublesome. But we are going to be cautious on our approach.

So Hannah went back to school today. With swimming lessons after. It's hard to believe that she will be graduating kindergarten in May. That will be an emotional night.

Thanks to all for your continued prayers for Hannah. Please pray for all the little warriors.

Tuesday, April 7, 2009 5:37 PM CDT

Hannah is on Spring Break!

Although today was no break. She had her brain/spine/abdomen MRI today and it was a rough go of it. They had a time finding a vein to access for the IV. I'm glad the port is gone, but days like today make you realize how much of a Godsend they are. Hannah did NOT like seeing the needles, but yet she wouldn't look away. But, she made it through. We got to the clinic at 9am, we left at 3:30pm. Thank goodness these are only twice a year now. We hope to have results by the end of the week. Please pray for clean & clear!

Evidently, the last round of antibiotics did not completely clear her sinus infection. After only a week or so being off the meds, her nose started running and she started coughing again. So, she's on another round of them. Hopefully this round will knock it out for good.

We are going to have some fun during Spring Break. We are heading up to South Carolina tomorrow to visit Dad's friend and his family. Hannah has been looking forward to seeing Elizabeth and Jacob and their "animal" family. It looks like it may be a bit chilly up there to start, but hopefully it will warm up. We will come back via GrandmaD's for Easter. Hannah is excited about coloring and hunting eggs, but she also knows that eggs are not the reason for Easter.

Thank you all for your continued prayers. And Blessings to you all this Holy Easter.

Thursday, March 12, 2009 7:32 PM CDT

PRAYERS NEEDED! Billy's tumor has come back strong. He is at Sloan where the docs will try to come up with a game plan. Please pray for Billy and his family. And visit his website and leave some words of encouragement. It really does help!

Today, March 12, 2009 marks the day, 5 years ago, that we learned Hannah had neuroblastoma. I hate to use the word "anniversary", because those are happy occasions. However, the fact that Hannah is not only still with us, but is thriving and doing so well, certainly makes every day a happy occasion.

It was a terrible day, a dreadful week, and a mind-numbing couple of years of treatment. But with God's strength, and your prayers of support, we have made it through to today. Hannah endured more than any child should and showed an inner strength that was truly amazing. There were many frustrating days, and sleepless nights, but she always inspired me to keep fighting with, and for her. Along our journey, we met many other brave kids that were fighting this battle too. And unfortunately, many have passed from this world... but they fly, free from pain, in Heaven. But their parents are still here, still filled with a grief that I cannot imagine and those families still need your prayers.

The new pic is from the Fashion Funds the Cure fundraising event for the Pediatric Cancer Foundation. It is an amazing event held every year where young girls fighting cancer have a night to get dressed up and be a runway star at a real fashion show. Hannah was thrilled to be wearing mascara and eye shadow. This was Hannah's third year participating, and she was one of 22 "alumni girls". She had practiced her pose (in the pic). However, I guess we didn't practice walking all the way down the runway. In past years, she has had an escort. But as an "alumni girl" she didn't have one. So, she came out onto the stage, went about 10 feet, did her pose, then ran backstage...lasted about 20 seconds. So, we didn't even get a chance to get a good pic. Hopefully, one of the other photographers did. Last year, the event raised $350,000 for research and clinical trials and we hope it did just as well this year. Hannah always enjoys the event, and it always brings a tear to my eye. Click HERE to see pics that were in the local paper. And click PICS for more professional pics.

I cannot express how much we have appreciated all the thoughts, prayers, cards, gifts and other expression of love and concern. I sincerely appreciate the continued support. And though I don't post as often, I hope you will continue to check in from time to time to keep up with Hannah as she continues to grow and develop. God Bless!

Monday, March 9, 2009 8:02 PM CDT

It seems the last post I wrote did not actually post, I apologize for that. So some of this info is a bit old.

Hannah is doing very well.
She has been very busy being a "normal" little girl. She is doing well in school; counting, reading, learning. She will be starting swimming lessons again this week. She does gymnastics on Fridays. She is very much into drawing pictures for the fridge.

A couple weeks back we went to visit GrandmaD for her birthday. We went out for dinner. Hannah enjoys anybody's birthday and GrandmaD always enjoys Hannah's visits. Last week, GrandmaD came to visit us in Tampa and went with Hannah to an ice skating show, both enjoyed it very much. This past weekend, we went to another birthday party. This time for a girl in Hannah's class. The party was at a pottery painting place, and she loves to paint. There were several little girls from Hannah's class there. It was such a joy to watch her having such fun with her friends. And since it is now spring, after church on Sunday, we went to the store and bought some pansies and violas and planted them. She found a rollie pollie and named it, Rollie, of course. It's funny, for as prissy as she is, she loves bugs, actually, any and all animals. Maybe she will grow up to be a vet. Who knows!

This past Friday, Hannah had CT scans on her chest/pelvis, without sedation, and she drank the contrast! Just normal follow-up scans and we are still waiting for results. Please pray for clean scans! She will have her MRI in April. She did have a bit of sinus infection, or some of the bug that's going around. So, she's on antibiotics and feeling much better. (She had a little fever when we went to visit GrandmaD.) But now she is good. Great energy and appetite too! Hopefully, that's a sign she might be growing again.

Tomorrow is the Fashion Funds the Cure event. Hannah has done this the past 2 years. This year, she will be an "alumni girl" and get to walk the runway by herself. She is very excited and I will make sure to get some pics. The Pediatric Cancer Foundation does such great work for research and they always love to see Hannah. Please visit thier website Faster Cure to learn more about them or to donate to the cause. As I have said before, there is only one way to beat pediatric cancer, and that is research and that takes money. Every little bit helps.

I know I'm not posting as often now. But I want all of you to know that I do appreciate the thoughts and prayers and concern that you still have for Hannah and all the warriors. It is a battle that still rages on, everyday, for thousands of kids. And although Hannah is doing well, we cannot let up our guard. I pray daily that she has beaten the beast and I believe she has. But there are many that are still fighting, and losing, the battle. Please keep them in your prayers.

Friday, February 6, 2009 7:40 AM CST

I know it's been awhile since my last post. But that's really a good thing! Hannah's doing great! So we're just busy with "normal" living!

School is going ok. She will be starting swimming lessons again in March. She is having play dates. A couple of weeks ago we went to a horse ranch and she got to ride a pony around the farm and see goats and chickens. She really loves all kinds of animals. Maybe she'll grow up to be a vetrinarian.

She has grown about 1" since Aug. '08!!! I know it's not much, but it's something, and we're excited about it. So is she! She loved seeing that we could make a new line. Please pray that the growth continues so she won't have to go on growth hormone. She will have blood work this week and we are scheduling 6 month scans in March and April.

I will once again ask for your help.
There is a lady who works for the Pediatric Cancer Foundation that is running in the Gasparilla race and raising money for pediatric cancer research. She's always been very kind to us. Please click HERE to donate. Let's help her reach her goal!

Please continue your prayers for all the warriors.

Friday, February 6, 2009 7:40 AM CST

Monday, January 5, 2009 9:27 AM CST

Happy New Year!!!
We truly wish all of you, all the best, for the year ahead!

Hannah had a wonderful Christmas break from school. We spent several days with GrandmaD. Then she went to visit some family with her mom. Of course, Santa was very good to Hannah, and she deserves it. Now, it's back to school! She seemed ok with that this morning as I dropped her off at class.

She has been feeling pretty good, with the exception of a little case of the sniffles. Otherwise, she is doing really well.

Please keep Hannah and all the little warriors in your prayers for the New Year. Thank you all for your continued support.

Tuesday, December 23, 2008 10:41 AM CST

On the eve of Christmas Eve, we wish you all a Merry Christmas.

We have been pretty busy doing holiday things and getting ready for the big day! A couple of weeks ago, we went to Disney for Mickey's Very Merry Christmas. Hannah really enjoyed the parade and the special shows. It was a bit cold too, so it actually felt a little like Christmas in Florida. We've been going around town looking at Christmas lights, she really likes that. And of course, a visit to Santa. She told him what she wanted for Christmas; Easy Bake Oven, and Barbie Cruise ship. We know that she's been a good girl! It's just a joy to have her with us, especially during the holidays, she is truly a blessing. Of course, this Christmas will be different, as Pappy will not be with us. But, the rest of the family will be together and that's what matters most.

We continue to think about all the families who have lost a warrior and those that continue to fight. We still fight and hope for a cure, which means research, which means money. And so, once again, I ask for you to donate to the Lunch for Life Giving Tree Fundraiser.And choose Hannah's name from the list, Hannah's Giving Code is = 31140. I know times are tight but every little bit helps.

Again, we wish all of you the very best for the holdiays and Thank You for your continued prayers for Hannah and all the warriors fighting the battle.

Tuesday, December 2, 2008 8:19 PM CST

Hope all of you had a wonderful Thanksgiving Holiday.

Hannah continues to do very well.
We went to to GrandmaD's for Thanksgiving. All the aunts and uncles and cousins were there. Of course, it was hard as the first holiday without Pappy. So it was good that all the family was together. Dad and some of the uncles did some work around GrandmaD's house, putting in new steps to the house and other things to help her around the house.

Today we went for a consult with a new endocrinologist, Dr. Root. We went through her medical history, which took quite awhile. We discussed future growth hormone treatment and possible adverse effects. So, we'll get some blood work done after the first of the year. There's still no real rush to start growth hormones. We just thought that it would be good to get a local doc for her long term care.

We continue to think about all the families who have lost a warrior and those that continue to fight. We still fight and hope for a cure, which means research, which means money. And so, once again, I ask for you to donate to the Lunch for Life Giving Tree Fundraiser.And choose Hannah's name from the list, Hannah's Giving Code is = 31140. I know times are tight but every little bit helps.

Thank you for your continued prayers and support.

Monday, November 24, 2008 11:26 AM CST

I know it's been awhile since the last update, my apologies.

Hannah is doing great. She has been very busy in school. They had their school play this past Friday. She had one line that she knew by heart. Her class also made apple sauce for the school's Thanksgiving Feast. She is really making progress in her reading. It's nice to have her read a story.

She is full of energy and really just doing normal kid stuff. She still hasn't lost her front tooth. I'm sure it will be soon. I'll try to get a pic up soon showing her missing teeth.

Healthwise, she seems to be doing just fine. The antibiotics helped clear up the cough/schnaze deal. We do have an appointment with a local endocrinologist for a consult. We'd like to have local support if we decide to do the growth hormone treatment. She still really hasn't grown at all this past year, so we may be having to make that decision.

She is seeing all the Christmas stuff going up in stores. She knows it is coming soon. It's so hard to believe the holidays are here again. But we are so very thankful at this time of year, as we are every day, that Hannah is with us to celebrate. It also makes me mindful of the families that have lost their warrior and will have to suffer through these upcoming holidays. We all must remember that the fight is not over, that there are many who still battle the NB beast and other cancers. They still need your prayers and support. And so, once again, I ask for you to donate to the Lunch for Life Giving Tree Fundraiser.And choose Hannah's name from the list, Hannah's Giving Code is = 31140. I really believe in Lunch for Life and know that every dollar goes towards neuroblastoma research.

We do have so much to be thankful for, and we give thanks to God for all He has blessed us with. We hope that you all enjoy this time with your family. And Thank You again for all your prayers and support.

Tuesday, November 4, 2008 9:18 AM CST

Happy Belated Halloween!

Hannah had a great time going trick or treating with family and her friend Eli. Lots and Lots of candy was collected. With a few frights along the way. It was great fun! We hope all of you had a fun and safe holiday.

On Saturday, we went to a birthday party for her friend, Danica, who turned 3. The party was at a place with lots of those bouncey houses. Let me tell you, they can wear you out. Hannah and I went through them, slid down them, and crawled over them. Then some pizza and cake. The rest of the weekend was pretty laid back.

Last Tuesday, the school called and said Hannah had been coughing alot, and vomitted too. We took her to the doc who prescribed some antibiotics. We think she got a cold a couple of weeks ago and the schnozies never really went away. So, she'll be taking the meds for the next couple of weeks. She already seems much improved. Her blood work came back good as well.

Her loose tooth is still hanging in there. She loves to show everyone that it's loose. So for now, the tooth fairy's on standby.

Thank you all for your continued thoughts and prayers.

Tuesday, October 21, 2008 8:25 PM CDT

It's been a busy couple of weeks since the last update.

Hannah had her 6 month brain/spine/abdomen MRI last Friday. We got the report today and all is clear! Praises! The lesions in her liver has gotten a slight bit bigger, the largest lesion is 2mm larger than it was a year ago. I will have to talk with the docs about this, but I don't think it is that concerning. She also got blood work done, no results yet.

Hannah lost another tooth, the front top one (the Tooth Fairy's going broke around here). Her other front top one is loose. So, that one will probably be coming out soon too. I told her if she keeps losing her teeth, she'll only be able to eat pudding and jello.

Last week she was the "Star Student" at school, something that they rotate through all the students. She got to bring something everyday for show & tell, she was "special" all week (of course, I think she's "special" every day, all year). I was able to go and have lunch with her one day (seeing 40 5-6yr olds eat lunch is an eye opening experience.. God Bless teachers!).

She is very excited about Halloween coming up. She doesn't like the scary things, but she likes to dress up. She is going to be Daphne from ScoobyDoo. We've carved our pumpkin and put up our "spooky" decorations.

As I posted in an update, Chad did win the Gentlemen's Fund. They think his article will be in the Spring issue of GQ. If you click HERE, you can see a pic of Chad and the other celebraties at the event. Thank you all so much for voting for Chad. It will mean $10,000 for the Foundation. And speaking of raising money for the Foundation, the Cancer Walk raised $71,000!!! Thanks so much to all who donated. Every dollar helps. This is what we must continue to do until pediatric cancer gets the exposure it needs to get more funding. Research is the only way to find a cure.

Again, I ask that you keep Hannah in your prayers and that you continue to pray for all the little (& big) warriors that are fighting this battle.
God Bless.

Monday, October 6, 2008 9:51 PM CDT

UPDATE: Chad is the official winner!!! For some reason, the magazine won't let the Foundation make an official press release. But they have been notified that he did win and he will be receiving his award on Oct. 15th! Thanks again to all who voted for Chad to support pediatric cancer.

It's been a bit since the last update. That's really a good thing. It just means we've been busy with "regular" life things.

I have not heard anything "official" about the Gentlemen's Fund and Chad's status. By their website, it certainly appears that Chad won. Believe me, As soon as I hear anything, I'll post it.

Hannah has lost another tooth on the bottom. She kinda looks like a reverse vampire, with holes instead of fangs. She likes showing anyone and everyone that she has lost another tooth. Her friend Kayla has lost some too. So the Tooth Fairy has been busy around our neighborhood.

She is enjoying school and has seem to taken very well to her teacher. She is learning to be more responsible for herself, which is good. I mean, it's not like she's spoiled rotten... but......

She continues to be such a joy. I love to see her energy, her laugh, her soaring spirit. I was recently watching some video from just after diagnosis. It was hard to watch, and it made my cry. But seeing her now, makes me smile. We have been so blessed while others have lost so much. There are so many angels. Please continue your prayers for the little warriors that continue their fight. And Thank You for your continued support for Hannah. In prayers, in thoughts, and in deeds.

God Bless

Tuesday, September 23, 2008 9:50 AM CDT

Hannah had a great weekend.
GrandmaD came down for a visit and we went to Cypress Gardens with some of Hannah's friends, Trevor & Kaylee. Hannah loved the roller coasters, and I mean loved. We spent most of the first day riding them. She is a speed freak. She also enjoyed the water ski show and the water park and slides. In all, it was an enjoyable time with friends (plus the Gators won). Her energy was great all weekend.

Her lack of growth is still an issue. We don't seem to be seeing any improvement. We are considering some endocrinologists here locally and will try to get a consult with that group. We really don't want to have to do the growth hormone shots, but we may not have a choice.

Hannah will be having a brain/spine MRI on Oct. 17th, along with her normal blood work. As always, scan dates make us hold our breath. But God has been good so far, and we trust He will continue to keep Hannah clear.

Thanks to all who voted for Chad Harrod, but he needs more votes and today is the LAST day to vote. Click the link above the journal. He really is a great guy. And please continue your prayers for Hannah and all the little warriors that fight for their life, every single day.

Sunday, September 14, 2008 9:36 AM CDT

LOOK! LOOK! VOTE NOW! LOOK! LOOK!
Please click HERE to vote for our friend, Chad Harrod to win the GQ's Gentlemen's Fund for pediatric cancer. It FREE and easy! Just look for the picture of Chad and Hannah! Vote by September 23rd! He's currently in 2nd place, let's put him in 1st! Chad is a tireless supporter of the Pediatric Cancer Foundation and the Fashion Funds the Cure event. He is also a survivor of childhood cancer himself.

The Cancer Walk was yesterday, and it was a GREAT success!!!
Thanks to ALL of Hannah's Helpers, we raised $2,255, more than double our goal!!! And enough to win 3rd place for the event!!! See the new pic at the top of the page with Hannah and her winner's tile! We couldn't have done it without YOU! Thanks again for supporting Hannah and pediatric cancer research! As soon as I hear a total for the event, I will post it. I know that last year it was around $75,000.You can see more pics of the event HERE, then click on the Second Annual Cure Kid's Cancer Walk link.

Hannah made it the whole mile, with a couple of rest stops along the way. After the walk, she got her face painted, had a snow cone and a hot dog and played some games. It's an enjoyable event, but it was hot. We also got to see some of the other cancer families that we haven't seen in awhile, like the Duckworth's. Heather is instrumental in organizing the cancer walk. And little Alley is adorable. Plus we saw Peyton, who is always a doll. The Fishman's too.

Yesterday, we went to the beach just before sunset. The recent storms brought alot of shells up to the shore. Hannah loves picking up shells and playing in the waves. Then we had a little picnic on the beach and watched the sunset. It was the perfect end to the day.

Thank you all for you prayers and support. Please keep all the warriors in your prayers!

Monday, September 8, 2008 8:08 PM CDT

Sorry about the lack of updates. The past couple of weeks have been a blur. After a couple of years of fighting, PappyD went Home to Heaven last Thursday morning. He had been in ICU for over a week before finally letting go. I was there to be with him and help GrandmaD. We know how hard it is to be in the hospital for an exteded period of time. His services were held this past Saturday. We did our best to make it personal and I think Pappy would have been proud. I made the decision not to bring Hannah up for any of it. She has the rest of her life to learn about death and I wanted her to remember Pappy for all the fun things, not laying in a casket. So, she was with her Mom while I was away.

Hannah is doing great.
She had another visit to the alternative doc. We are still giving her some supplements and waiting for her to grow a little bit. She has MRI scans in October.

The Cure Kid's Cancer Walk is this Saturday. A great BIG Thanks to ALL who have donated. Thanks to you, we blew past our $1,000 goal and have over $2,000 so far. If you haven't, please check out the link above the journal.

Please remember to pray for all the warriors, big and small.

Tuesday, August 19, 2008 7:49 AM CDT

KINDERGARTEN!!!!
Hannah started kindergarten on Monday! What a special day!
She was so excited to start K5 with her new Pet Shop lunch box and Fluffy, the class hamster. Her new teacher is Mrs. McSpadden and there are a few kids from her K4 class in this class. So, she already knows some of the kids. Of course, class was cancelled today, due to the storm. But so far, our area has not really been affected. So, she should be back in class tomorrow. I know that for most parents, this is a special day. But as you can imagine, seeing her in her classroom, almost brought me to tears. There were many nights when I didn't know if she would make it to see kindergarten. We have been so blessed.

More good news, Taylor is out of the hospital and doing very well. He is on some antibiotics and will re-start chemo. The brain infection seems to be in-check. This past Sunday, we went out for another steak dinner. This boy loves steak.

And PappyD is out of the hosptial too. He was in for about a week with atrial fib. They ran alot of tests, and gave a transfusion. I don't think they really figured out what happened. But he seems to have better breathing and energy.

Cure Kid's Cancer Walk--Sept. 13th
Wow, it's already been a year since our last walk when so many of you helped us raise over $3,000 for cancer research. With the money they raised last year, they were able to fund their first clinical trail. So, here I am again, asking you to help us fight pediatric cancer. You can donate online, Cancer Walk. Please feel free to pass this website on to your friends and families. All your help is greatly appreciated! Together we can make a difference.

Please continue your prayers for all theses warriors.

Tuesday, August 12, 2008 11:38 PM CDT

Good News!!!
1 - Hannah's scans are CLEAR! - Praises!!!
2 - Taylor was released to go home!

After some waiting, we finally got results from Hannah's PET/CT. Usually we just get the clinic to fax the reports. But on Monday, we got a call that Dr. Wynn wanted to talk to us, a bit un-nerving. He called Tuesday and just wanted to let us know not to be alarmed about what the PET report said about some metabolic activity in the thyroid, that is sometimes normal. Plus, she'll be having her MRI soon which will cover that area. The CT did show the spots in the liver, but they all seem stable. The bone marrows and spinal fluid were clear. Whew! She has a dentist appt too. Good thing, as she has another loose tooth!

Hannah is in gymnastics camp this week, and loving it. She loves dancing and rolling around. I did notice, and so did she, that all of the girls are taller than her. So I did a little pep talk about everyone being different and that she would soon be as tall as them. "Soon" being relative.

In less than a week, she starts kindergarten. I'm so glad that she is excited about it. Today, we bought a Little Pet Shop lunch box. She picked it out herself and already named the horse that's on it, Snowflake. She's funny, she names all of her stuffed animals, and there's alot of them, and she knows all of their names. And if you call one of them by the wrong name, she will correct you. She always keeps me on my toes.

Taylor was released on Monday. He went home on a couple of antibiotics for the brain infection and will keep a very close eye on him. On Sunday, he got a hall pass and we went to see Dark Knight on IMAX, he loved it! His spirits are good.

Please add PappyD to your prayers. He continues to have shortness of breath and extremely low energy. Monday, he was admitted to the hospital for atrial fib. Of course, GrandmaD is with him all the time in the hospital as they run tests and poke him with needles.

Thanks to everyone for the Birthday Wishes! I think Hannah had a memorable birthday/vacation. She did say that being 6 doesn't feel any different than being 5. Funny!

Thank you for your continued prayers for Hannah and all the warriors.

Monday, August 4, 2008 7:42 AM CDT

TV NEWS!!! Our friend Taylor, who's been in the hospital for 4 weeks with an infection in his brain, was interviewed by a local TV station. Click on this link to see the video.Taylor on TV

UPDATE-AUG 7
Hannah had her PET/CT and bone marrows yesterday. It was a long day for her and mom, starting @ 6:15am at the diagnostic center. They took her back about 7am and then had problems getting an IV line started. Once they got that going, they did the PET, which Hannah stayed still for, without sedation. But since she was not sedated, the sent her to another department to get the CT, very aggrevating. The bone marrows got started around noon, she has to be sedated for these. She did have some pain afterward, but with a little time and tylenol, she was feeling better by the late afternoon. We will now wait for results. Please pray for CLEAN!
PS-Taylor got a hall pass from the hospital. He wanted steak for dinner, so we took him to Cody's where he devoured a big steak. He really seemed to enjoy it. But then it was back to the hospital. He will be getting a lumbar puncture on Friday to check his spinal fluid for bacteria/fungus. Still hoping to get released some time soon.
PSS-I've added some new pics to the slideshow and the webshots site - click new pics link above journal

HAPPY 6th BIRTHDAY HANNAH!!!
We had a great vacation/birthday week!

Saturday, July 26th, we had a small Birthday party at Dad's house, with some of Hannah's friends. Hannah loves any kind of party, but especially when it's for her!

Then, we spent a couple of days on the beach with a long-time friend of Dad's and his family. Hannah made a new friend with his daughter, Haley-age 8. We played in the waves, played in the pool, cooked on the grill, and watched the sunset. A great way to start a vacation. Even when you live in Florida, we don't get to the beach as much as we should.

On Tuesday, we headed to Hannah's favorite place, Biddidi-Bobbidi-Boutique in Orlando. She has been looking forward to this for months now. She chose to be Jasmine, mostly because her belly would show in the outfit. We had some friends come with us; Stacy (mom), Kaylee-4yrs, brother Trevor-6yr, and their cousins, Lindsey and Lauren, 14 & 11. All girls, except Dad & Trevor. Kaylee dressed as Ariel, so her belly would show too. They both looked pretty cute. Afterwards, we went to Rainforest Cafe for lunch. Then to the hotel where the kids just played and ate pizza. On Wednesday, we headed to Sea World. Hannah loves seeing the dolphins and all the other animals. The past couple of times we've gone, she hasn't been tall enough to get on the kid's Shamu roller coaster, and she's been disappointed by that. But this time, we got on, and rode it 3 times! She was so thrilled, I think she would have been happy if that's all we did at Sea World. My girl loves those kinds of rides and I'll be in trouble when she gets bigger and wants to go on bigger rides. We also got to see the Shamu Rocks show at night, which was pretty cool. Hannah's energy was amazing, she went all day, full tilt, till we got back to the hotel.

On Thursday, we headed to GrandmaD's house where we had a little cake and ice cream party, with presents of course. There were aunts and uncles and cousins to help celebrate her birthday. We stayed with Grandma for a couple of days and then went to visit some more friends, Jacob and Elizabeth, down from South Carolina. There, we had more swimming and eating and having fun. Thanks to Bill & Judy for the hospitality.

It was great to have a full week of celebration and to see Hannah playing and having so much fun. She certainly deserves all of it, and more. We are so blessed that she is with us and that she is doing so well.

On Wednesday, Hannah will have her PET/CT, blood work, bone marrows and ommaya tap. Please pray that all these tests come back clean and clear! At the end of the week, she also goes for a follow up to the alternative doc. We hope that she will show some signs of growth.

While we were gone, our friend Taylor, was having a pretty rough time in the hospital, he's been inpatient for 3 weeks now. He has a serious infection in his brain, which has cause fluid buildup and pressure in the skull. He has been improving and we're praying that he'll be able to go home this week, if things stay stable. We're waiting for him to get out so we can take him to see Dark Knight! Please pray for him and his family.

Also, please pray for Hannah's grandpa, Pappy. While we were visiting, he was feeling alot of pain. We took him in for a CT, should get some results today. He also starts another round of chemo today.

Thank you all for checking in on Hannah and your continued prayers for her and all the warriors.

Tuesday, July 22, 2008 8:52 PM CDT

Again, sorry for the lack of updates.
I was out of town on business last week, and this week has started off pretty busy.

Hannah has been busy too!
She is taking karate on Monday nights and really seems to be enjoying it. She is excited about getting her white belt. She's always asking what belt comes next. I think karate will help her physically by kicking and also mentally, giving her confidence. This week, she is in acting camp at the local YMCA. They dance and act out little plays. She loves doing both. And she continues with swimming 3 days a week. She seems to be gaining more confidence in going under water and takinga breath while swimming.

And finally, her 6th birthday is this coming Friday! We will be taking a week of vacation next week to go to Orlando for the boutique and visit friends and family. We received her Jasmine outfit today and she tried it on. She was very happy. We are looking forward to the time off. We are so, so fortunate to be able to celebrate another birthday. This past year, so many close families have lost their warrior. They are constantly on my mind and in my prayers.

On a positive note, our Congress did pass the Cancer Childhood Cancer Act that will increase spending for pediatric cancer research by $30 million over the next 5 years. We still need more, but it's a start! Thanks to all of you who contacted your congressman and urged their support, it worked!

On a not so positive note, our close friend, Taylor, has had a pretty rough time starting a little over a week ago. He started running a pretty high temp and having continuous nausea. They ran some tests and found a large abcess in his brain. They removed quite a bit of fluid which seemed to help, but he still wasn't right. Then they found he had a very serious infection in his shunts, so he had another surgery to pull his ommaya and one of his shunts. So, two brain surgeries in two days! He has continued to have some nausea and occasional nose bleeds. We took him up some new PJ pants, which he really seemed to like. Today, he seemed to improve. He had a good appetite and kept all the food down. He will have to remain in the hospital while they run antibiotics. Please keep him and his family in your prayers.

Please, remember all these brave warriors in your prayers. They fight a battle, everyday, that many people don't even know exists.

Saturday, July 12, 2008 10:57 AM CDT

Hannah has been having so much fun!
She just did a week of Art Camp at the local YMCA. She just loves painting and crafts, so she really enjoyed it. She also has swim camp, 3 days a week. She seems to be steadily improving with her swimming.

Medically, she continues to do well. She hasn't had any recent issues. She will get scanned in Sept. She is still on supplements from the "alternative" doc. We will continue with those for a few months and then evaluate. I think she has grown, but just a tiny bit.

Her birthday is coming up at the end of the month and she is very excited about turning 6. For her birthday, she wanted to go back to Bibbidi Bobbidi Boutique and get dressed up as Jasmine. So, that's what we'll do, and probably go to Sea World for a day too.

That's about it for now.

Please remember Hannah and the many other warriors that continue to fight and the new warriors that have been recently been diagnosed.

Tuesday, July 1, 2008 8:52 PM CDT

Again, sorry for the lapse of updates. But man, time is just flying by. We're well into summer already, so quickly.
Anyway, Hannah is doing great. She continues to have fun.
She loved her dance camp. I was able to stop by on the last day and see the routine they worked on. It was really cute. I took some video. I'll see if I can figure out how to post it. This month is swimming camp, just 30min/day. But she is enjoying it as she hasn't been in swimming lessons for a couple of months now.

Tomorrow, she will go see the "alternative" doctor for a follow up. She will also get to spend some time with one of her favorite cousins, Matthew. They will be going to Disney for the 4th of July.

This past weekend we went to the FL Aquarium with a new friend, Lexy, who is 4. Hannah took to her right away and the two had a great time. Lexy liked the sharks, Hannah liked touching the sting rays. Plus, they have a cool water play area outside where they played for quite awhile. We were going to go bowling afterwards, but Lexy came to our house and the girls were happy just playing dress up and being silly. On Sunday, we went to see KungFu Panda. Hannah really liked it because of the karate. We are still working on getting her into karate, hopefully a camp during summer. If not, then a class when school starts.

Today, when we got home, there was a package waiting for Hannah. It was a birthday box from the Kid's Cancer Crusade, with coloring books and stickers. Thank you so much for the gifts. She was so excited because it was her first (of many) birthday presents. Now, I just have to explain that her birthday isn't for another 3 weeks!

So, the summer fun continues. We wish everyone a fun and safe 4th of July. We are blessed for many reasons, and one of them, is living in the best country in the world! God Bless the USA!

Please continue your prayers for:
Emily-An Angel now-pray for her family's peace
Taylor - Just had another round of chemo, scans upcoming
Justin-In NY for treatment, scans still show disease
Olivia - An Angel now-pray for her family's peace
Olivia's site CarePages -- page name=livilulu
Jenna -Doing well after surgery- spot showed NO nb!
Sam - Recently relapsed, on chemo now

Tuesday, June 17, 2008 7:11 AM CDT

Hannah had a good weekend.
We went up to GrandmaD's & Pappy's house to visit for Father's Day. We went blueberry pickin'. Hannah enjoyed being the "taste tester". GrandmaD made a cobbler with the fresh berries, Yummmy! Uncle Jim brought up some blue crab for Pappy, his favorite food. More uncles and nieces came out for a shrimp dinner. And after, we cooked some marshmellows. It was a fun time with family.

Hannah started Dance Camp this week. She was so excited about wearing the dance outfit, (see pic). I'm sure she will enjoy the week.

Last week she had a clinic visit for blood counts. All looked good. We are starting to think about upcoming scans in Sept. Trying to get answers on exactly what should be done.

Please continue your prayers for:
Emily-An Angel now-pray for her family's peace
Taylor - just had surgery to put in a port for chemo
Justin-Home for now, heading back to NY for treatment
Olivia - In NY - had seizures and found brain hemorage - having brain surgery this week
Her site CarePages -- page name=livilulu
Jenna - recovering from brain surgery - spot showed NO nb
Sam - Recently relapsed, on chemo now

Sunday, June 8, 2008 8:15 PM CDT

Sorry about the lapse in updates.
Hannah is doing great! Just busy with "normal" life.

School is over! Hannah is very excited about going to kindergarten. Mostly because they have a hamster in their class named Fluffy. She is beginning to read a little bit and that is very exciting. This week, she will be going to the vacation Bible school at her church. The following week will be dance camp.

This past Friday, she had a follow up with Dr. Reinhart, the "alternative" doc. It's hard to really explain what he does, but none of it involves any pain for her. According to mom's measurements, she has grown a 1/4 inch in the last 6 weeks. Not much, but a start. Hannah also gets to visit her cousin while she is in Stuart. She enjoys that alot.

Good news! Jenna's brain "spot" was successfully removed and the pathology showed it was NOT nb! She has recovered well from the procedure. Prayers work!

Taylor had surgery on Friday to put in a port for his chemo. The surgery went well. But he still has alot of nausea from the chemo, which he gets every 2 weeks.

Pappy will start his 2nd round of chemo on Monday. He had a transfusion last week that made him feel a bit better for about a week. But he is starting to fade again. We will be going up to visit him for Father's Day this coming weekend.

Please continue your prayers for:
Emily-An Angel now-pray for her family's peace
Taylor - just had surgery to put in a port for chemo
Justin-Home for now, heading back to NY for treatment
Olivia - In NY - had seizures and found brain hemorage - having brain surgery this week
Her site CarePages -- page name=livilulu
Jenna - recovering from brain surgery - spot showed NO nb
Sam - Recently relapsed, on chemo now

Monday, May 19, 2008 8:42 PM CDT

Hannah had a great weekend.
We went over to Orlando to meet up with Dad's friend, Michele, who was down with some of her family for vacation. Her and her niece, Judy, joined us for a day trip to Sea World. The girls had lots of fun, starting with getting their faces painted. Then it was off to see Shamu and ride some rides. It was a bit hot, but not too bad as it was overcast with a little breeze, but never rained. After our day at the park, we went with Michele and Judy back to their hotel via a water taxi from Downtown Disney. Hannah really enjoyed spending the day with Judy, who is such a sweetheart. We all enjoyed the day alot.

Hannah's mom is on a mission trip. So, she is with Dad for the whole week while she's away. I'm looking forward to having the time with her and taking her to school each day (we might skip on Friday). At the end of the week, we hope to take a trip up to see GrandmaD. But that will depend on how Pappy is feeling after last week's first cycle of chemo.

There's only about a week left in school, last day of K4 is May 28th. Then, it's officially summer! Hannah is very excited about going into kindergarten. I'm not sure she realizes that it will be a little bit before that happens. Regardless, I'm glad she's excited and thrilled that she is at this point in her life. There were some times when I didn't know if she would ever be in kindergarten. We are so blessed and so thankful.

Please remember to keep the Adamson's family in your prayers. They had a celebration service for Emily this past weekend. They are such a close and strong family, and I'm sure the loss is indescribable.

We have another friend that needs your thoughts and prayers, Sam. He has relapsed and has started on chemo again. He is a fighter for sure, and I'm sure his family would appreciate your support.

Sometimes, such as now, it is so very difficult to live "between worlds". Knowing that so many children are still suffering and fighting and dying, and my heart breaks for them. And enjoying the blessing that is Hannah. And balancing that with the fear that the nb beast might come back and trying not to allow those thoughts and ...........I have to admit, sometimes I'm not exactly sure how I'm supposed to feel. But I take each day, and enjoy the good and accept the bad (maybe accept is not quite the word).

Please continue your prayers for:
Emily-An Angel-pray for her family's peace
Taylor - had a rough chemo cycle, feeling a bit better now
Justin-Home from NY-doing ok
Olivia - In NY for scans and treatment
www.carepages.com -- page name=livilulu
Jenna - Heading to NYC for a brain surgery/removal of the "questionable" spot - pray for NO nb
Sam - Recently relapsed, started chemo this week

Sunday, May 11, 2008 7:54 PM CDT

Update: Our dear friend Emily became an angel Monday afternoon and is in Heaven, free from pain. We have known Emily for the past 4 years or so on this nb journey. We spent some time together in NY for treatment. All who knew her, knew her tremendous courage and inspiring smile. Please leave words of encouragement for her family; David, Diane, and her twin sister, Mary Grace. They will need your prayers to get through this most difficult time.

Happy Mother's Day!!!
We hope that all you mothers enjoyed your special day with loved ones.

Hannah is doing fine. However, this past week has brought some bad news for some of our dear friends. Emily spent some time in the hospital and is home now, but on pain meds as her liver is swollen. Jenna will be having brain surgery to remove the "spot", still unsure as to what the "spot" is. And, Hannah's grandpa, PappyD, had surgery to put in a port and he will start chemo on Monday. We ask you to pray for Emily to be free from pain, for Jenna to have no complications with her surgery and that they can confirm that there is no nb, and for Pappy as he starts his chemo.

Hannah is getting excited about summer coming. School will end in about 2 weeks. She will be spending time going to different camps; art camp, dance camp, swimming camp, acting camp. It will be a variety summer, along with vacation time with mom & dad.

Please continue your prayers for:
Emily-An angel on Monday
Taylor - another chemo cycle this week
Justin-In NY for radiation
Olivia - supposed to be coming home from the hospital-infection
www.carepages.com -- page name=livilulu
Jenna - Heading to NYC for a brain surgery/removal of the "questionable" spot - pray for NO nb

Sunday, May 4, 2008 8:25 PM CDT

Hannah had a great weekend, starting on Thursday night.
Thanks to the Pediatric Cancer Foundation who provided us with tickets to the Disney Princess on Ice show. Hannah and her mom and I went to the show. Hannah has seen the show a couple of times before, and they do change it up a little bit, and she still loves it. And it's Disney, so it's a great production. Thanks again to the Foundation for the tickets.

Friday night, Hannah had her first sleepover at her neighbor friend's house, Kayla. She was so excited. I bought her a Tinkerbell Slumber bag. When we got home, she packed it up with her pajamas and toothbrush and wheeled it right across the street to Kayla's. They had a great time doing girl stuff and watching High School Musical and sleeping on a blow-up mattress. In the morning, I went over for breakfast. They were still in their pj's drawing pictures. She really enjoyed it.

On Saturday, we went to a communion service for a friend's son. Afterwards, we went to their house. Hannah had fun playing dress up with the other little girls. They put on a Princess fashion show, of sorts.

Sunday was a "chill" day. She rode her bike to the park across the street. We had a little picnic lunch watching the ducks in the pond. It was a gorgeous day. When we got home, we watched Enchanted. For those not in the know, it's another Disney spinoff, but this time, the princess comes to life in NYC. I have to admit, it was pretty funny.

On the health front, she's doing pretty good. Nothing new to report. Her energy and appetite are good.

Please continue your prayers for:
Emily-Home from the hospital with minimal pain
Taylor - MRI showed a decrease in the tumor size - continuing chemo regimen
Justin-In NY for 3F8 treatment
Olivia - supposed to be coming home from the hospital-infection
www.carepages.com -- page name=livilulu
Jenna - Heading to NYC for a brain biopsy of the "questionable" spot - pray for NO nb

Thursday, May 1, 2008 6:43 AM CDT

Sorry for the delay in updating.
Hannah is doing very well.
She recovered very quickly from the port surgery. She had a follow up visit with the surgeon yesterday. They were pleased with how the scar looks. We'll have to be careful with keeping the scar from getting sun, which is hard to do in Florida, in the summer. But we'll keep it covered.

Our visit with the doctor in Stuart was very interesting. He is an intelligent man with a different, but intriguing approach. It is called quantum biofeedback and is based natural energies. Basically, that the earth and our bodies have a natural polarity and frequencies, and that these all need to be in line. Kind of like "chi". He did some diagnosis work and a couple of minor adjustments to her spine (he is a liscensed chiropractor). Now we'll just have to wait and see how it goes. She'll have a follow-up in about 6 weeks. I am a bit skeptical, but hopeful, that we'll see some growth. But again, there was no pain for Hannah, so what does it hurt.

Her energy has been great! She's up early and going full tilt from the start till it's bedtime. She's eating pretty good as well.

This weekend she is going to have her first "sleep over" with her neighbor friend, Kayla. She is very excited about it. She asked where she was going to sleep, and I said in the bed with Kayla. She responded, "What if she knocks me out of bed?", I assured her Kayla wouldn't do that on purpose. So, I guess we'll get her a fairy sleeping bag for the event.

Please continue your prayers for:
Emily-in the hospital with some GI issues
Taylor - MRI showed a decrease in the tumor size - continuing chemo regimen
Justin-In NY for 3F8 treatment
Olivia - Still in the hosptial with an infection, low counts & transfusions
www.carepages.com -- page name=livilulu
Jenna - Had a "questionable" spot in her last brain MRI - 2nd scan showed no growth, but still inconclusive

Friday, April 18, 2008 8:30 PM CDT

The port is gone!
Hannah had her surgery this morning and all went well. We got to the hospital around 8am and checked in. Things went pretty quickly. Hannah got a little upset that she was going to get "gas" instead of sleepy juice. The surgery was about 30min. Dr. Albert said everything went fine. Hannah even woke up pretty good out of the anesthesia. This is a big milestone in her journey. We are so thankful that we have come to this point and we look ahead with hope.

Her class went to the aquarium yesterday on a field trip. She loves the aquarium. But they didn't get to play in the waterpark as it was closed for renovations.

We'll keep a low profile this weekend to make sure everything is ok. Unfortunately, she can't get wet for 48hrs, so we'll have to come up with some dry things to do. Tonite we had popcorn and watched Pocohontas II.

Next Friday, we are going to a new doctor over in Stuart, about a 3hr drive. We are going to explore an "alternative" approach about her growth issue. We're not sure if it will work, but have decided to give it a chance. We're also not exactly sure how he will test or what treatment he will suggest. But if it won't do her harm and if it can help turn on the gland to make more growth hormone, we might try it. There are some risks with traditional growth hormone treatment; recurrance of nb and/or secondary malignancy. Plus, the treatment is a shot, every day, for years and very expensive. We definetley want her to grow, but we also are hesitant about having to do more drugs. So, we'll see what happens. We have some time to see if this might work.

Please continue your prayers for:
Emily-Doing "ok", but still having some pain
Taylor - Doing "ok", just had MRI on Thursday-no results yet
Justin-Going back to NY for more 3F8 treatment
Olivia - Back home, but in the hosptial with an infection-www.carepages.com -- page name=livilulu
Jenna - Had a "questionable" spot in her last brain MRI - pray for clear

Thank you for your continued prayers. Today's surgery was another affirmation that prayers do work. Hannah is a miracle made possible by prayer. The children above, and many more, are fighting every day. Please lift them up to the Lord, the Great Physician!

Monday, April 7, 2008 4:29 PM CDT

Hannah is continues to do well.
She did have her MRI on Friday. All went smoothly, except the scan started an hour late, around noon. She woke up a little cranky because she was hungry, but rebounded pretty quickly. We got the results today...clean & clear. Praises!!! Today, she went to the clinic for an ommaya tap where they draw spinal fluid out for testing. We hope to have these results in a couple of days. She is scheduled for her port removal surgery on 4/18. She is very excited about getting her port out because we told her after her port is out, she can start karate classes. Watch out!

We are still thinking about what to do for the growth issue. We are very hesitant about hormone therapy. So, we are going to investigate to see if there are some alternative treatments to try first.

We went to visit GrandmaD and Pappy over the weekend. It was kind of a rainy weekend here in FL. So, we did some cooking, and lots of puzzles and coloring. Uncles, aunts, and cousins came to visit too. Pappy is still feeling pretty low in energy and just rundown overall. He started a new medicine that we pray will help.

Please continue your prayers for:
Emily-Doing "ok", but still on pain meds
Taylor - Doing "ok", but still on chemo
Justin-In NY, getting 3F8 treatment
Olivia - in NY, just had a successful tumor removal surgery and recovering-www.carepages.com -- page name=livilulu
Jenna - going to NY for scans

Thank you for your continued prayers.

Monday, March 31, 2008 8:46 AM CDT

Hannah is Home!!!
She and her mom arrived back in FL Sunday afternoon.

The trip to NY was successful, for the most part. She did have the MRI on her abdomen and pelvis, and everything looked good. One of the primary reasons for taking her to NY is for the late term follow-up with Dr. Sklar. One of our main concerns is that Hannah really hasn't grown any taller in about a year. So, on this trip we expected that they were going to do a test to measure the growth hormone level in her body. At least that's what I thought. They had not scheduled that test though. When her mom was in NY she talked with them about it. Well, they only do this particular test on Friday mornings. Hannah was scheduled for her brain/spine MRI on Friday morning. So, we had to make a decision. We thought it was important to have this hormone test done there, so... we had to cancel her MRI to get the test done. We have it scheduled here in Tampa this coming Friday, April 4. The test did show that Hannah is very low on growth hormone, low=10, she's 3.5. So, we have some thinking and decisions to make regarding this. The treatment is a shot, every day, for years. Doesn't sound fun. We don't have the results of most of the other tests as of yet. On the fun side, Hannah did get to see her cousins, Molly & Adam, and her great-grandma.

Today, it's back to school. I would think not many other 5yr olds can say they went to NY for Spring Break!

Please remember to pray for:
Emily-Doing "ok", but still on pain meds
Taylor - Doing "ok", but still on chemo
Justin-In NY, getting 3F8 treatment
Olivia - in NY, just had a successful tumor removal surgery and recovering-www.carepages.com -- page name=livilulu

And all the brave kids fighting each and every day.
Thank you for your continued prayers.

Monday, March 24, 2008 8:37 AM CDT

Happy Easter!!!
We hope that all of you had a wonderful Easter and remembered the real reason of Easter.

Hannah had a great weekend. On Saturday, we went to an egg hunt at the park that a local church was putting on. However, there were so many kids that they grabbed up all the eggs before Hannah and her friend, Kayla, could get any. They were both a little disappointed. But believe me, the Easter Bunny definetely made up for it with their Easter baskets! Hannah just really enjoys playing and being with Kayla. On Sunday morning, we went to Hannah's mom's church for Easter services. She wore the outfit in the new pic above. She did look adorable. Then she went with her mom to Grandma's house for another egg hunt and dinner.

This morning she went to physical therapy for a follow-up evaluation. It's been about 3 months since her last one. With all the energy she's had and running and playing, I think she'll be fine.

Tuesday morning, Hannah and her mom will be flying to NY. I will not be able to make this trip, which is hard. But hopefully, it will be a smooth trip. She has scans on Wed & Fri, and consults with Dr. Sklar (late term effects) and Dr. Wolden (radiation oncologist) on Thursday. Then they will go visit some family in NY over the weekend, returning home to FL on Sunday. Please pray that all the scans and tests come back clear and normal.

Last week, I spoke with a nb cancer mom, Becky. Her 14month old daughter, Olivia, has nb in her brain. They live in the Tampa area. We discussed the 8H9 protocol at Sloan and they are heading up there this week to consult with the docs. With Hannah being up there, hopefully they will get to meet. Please pray for this little girl and her family as they continue their battle against the beast.

And please continue to pray for:
Emily-Home and feeling a little better
Taylor - On a new chemo regimen

And all the children fighting each and every day.

Sunday, March 16, 2008 6:21 PM CDT

As you can see from the new pic, Hannah really enjoyed the Fashion Funds the Cure Fashion Show. It was truly a great event, even bigger than last year's show with over 500 people in attendance and raising over $280,000 for pediatric cancer research!!! Hannah enjoyed getting her makeup done, with mascara even! The Pediatric Cancer Foundation always does such a great job with their events. We got to see the familiar faces of Katia and Peyton, both in the show last year. This year, they had some of the older girls as "alumni" with special t-shirts. Again, it was a great night and Hannah really enjoyed it. Thanks for all that supported the event.

Hannah continues to do well. We had to keep her out of school one day last week, as a couple of the kids were sick. So, we were cautious. Last Monday, I went to the zoo with Hannah and her class. It was a nice experience getting to see her interact with some of her classmates. We all had a good time. But some of the girls, including Hannah, were a little low on energy after lunch. I think because that's usually their naptime.

Hannah and her mom will be leaving for NY on Tuesday, March 25th. There will be a couple days of scans and tests and one day of consults. Then they'll visit some of her mom's family in NY over the weekend.

Please continue your prayers for Emily. She was able to go home on Friday, so that's good. It seems they have a handle on the pain management. But she still needs ALL of the prayers from Hannah's Helpers!

Thank you for your continued prayers and support.

Sunday, March 9, 2008 9:42 PM CDT

PLEASE PRAY FOR Emily. She has been getting daily radiation to try and help with the pain as well as pain meds. She and her family need your prayers. I would encourage all of you to post in her guestbook or even to send something to brighten her day. I know she is really into Hannah Montana (like every young girl in the nation). She is truly a fighter, but she will need the Hand of the Healer to conquer this.

Hannah is doing very well.
We had a fun weekend at Dad's house. On Saturday, we went to a festival with her friend Kayla. Hannah really enjoys the rides; roller coasters, tea cups, swings. She is not tall enough to go on alot of the rides she would like to, but I keep telling her that one day she will be tall enough. She's a thrill seeker for sure. On Sunday, we visited with some friends and their little girl Danica. Hannah was very sweet helping the little one and playing with her. They are so cute when they play. When we got home, we took advantage of the time change and extended day by taking a bike ride to the park.

Medically, Hannah is great. No schnazies. Her appetite has been really good. Her energy is great. She is really just going great. At the end of March, she will be going to NY for some scans and a follow up with Dr. Sklar, the late term effects doc.

This coming Tuesday is the Fashion Funds the Cure event benefitting the Pediatric Cancer Foundation. Hannah was a model last year in this great event. We feel honored that they have asked for her to be involved again this year. They have local girls with cancer walk down a real fashion runway with local celebrity escorts. It's really about making these girls feel special and raising money for research. I will try to get some pics up as soon as I can following the event.

Thank you all for your continued thoughts and prayers.

Saturday, February 23, 2008 4:22 PM CST

PLEASE PRAY FOR EMILY
Many of you may know Emily. She is an amazing and courageous little girl that has been fighting for a long time. Her parents received the devastating news this week that nb has come back with a vengance. Please pray for Emily and her family as they face the most difficult time I can imagine, and leave a note of support on her website.

Hannah continues to do well.
She has been enjoying school and swimming lessons. She has had great energy and been eating pretty well. Her sinuses have remained somewhat clear. Some days she has a little bit of a runny nose and then it goes away. We've consulted the ENT and have a plan for the next time, when it doesn't go away. But really, she's doing very well.

Today, we went to her friend Steven's 5th Birthday party. There was pizza and cake and of course, presents. Hannah always enjoys birthday parties.

Afterwards, we stopped by and saw Taylor. He looks good. And his spirits seem to be pretty good too. His mom will be meeting with the docs on Tuesday to discuss treatment plans and options. Please pray for the docs and her as they consider the difficult decisions ahead.

I spoke with Michael Haley's dad this week. As you can imagine, it was a difficult time for them. He said they had a party where they sang "Take me out to the ball game", one of Michael's favorites. Please keep the Haley family in your prayers as well.

That's about it for now.
Please keep all the NB warriors in your prayers:
Emily
Justin
Sydney
and the many others that continue their battle.

Thursday, February 14, 2008 6:52 AM CST

Happy Valentines Day!!!
Hannah is doing fine.
However, this has been a hard week in our cancer world.
Our friend Taylor had scans this past Monday, they showed the tumor in his brain had grown. He had surgery last night to put in a catheter to drain some of the fluid out. He was in good spirits. He asked for a T-bone steak for dinner, so we picked that up on the way to the hosptial. They have not yet decided on exactly what the new treatment plan will be. Surgery does not look promising because of where the tumor is located in his brain.

Last night, I got word that Michael, in California, had passed on Tuesday night. During the past couple of years, I have become pretty close with his father, Larry, sharing many phone calls about treatment and how Michael was doing. His disease progressed pretty rapidly since his latest relapse and he was in pain. Now, he is flying free.

On the lighter side, GrandmaD and Pappy came down for a visit over the past weekend. Hannah always enjoys their visit. We had some family down from NY as well, so we had a nice time catching up. On Sunday, we made it to the beach so Hannah and GrandmaD could feed the seagulls and look for shells. The sunset was beautiful. Pappy was feeling ok through the weekend. He is still getting transfusions every 2-3 weeks. I was glad he was able to enjoy his time with us.

Hannah continues to do very well. Her sinuses are still clear, which is amazing, considering all the bugs going around at school. We had to take her out of school a couple of days last week, because one of the students had scarlet fever. Hopefully, we got her out before exposure, time will tell. Her energy has been great, her appetite is good. She's a joy; dancing and laughing and playing hard.

She will have an echo and ekg this coming Monday, otherwise, not much going on medically till the trip to NY at the end of March. She is currently on NO meds!

Please pray for Michael's family as they are faced with his loss. Please pray for Taylor's family as they are faced with a setback and have to make difficult decisions for his future. Please pray for Justin as he is still in NY receiving antibody treatment. Please pray for Emily as she recovers from her last round of chemo. Please pray for all these precious warriors. Prayers do work, we know that.

Tuesday, February 5, 2008 7:17 AM CST

UPDATE: Feb. 6
Great news! We received all clear results on the PET/CT and bone marrows. Praises!!!

Hannah is doing great!
She did have her PET/CT and bone marrows on Monday. We got to the hospital about 11am, waited for awhile, then accessed her port, then headed over to PET for the injection. Then we waited about 45min during which time we read stories and colored to keep Hannah still (muscular movement would affect the scan). Then we were ready to scan, but anesthesia had not shown up. So, we decided to try it without. Hannah did an awesome job! She had to lay still for about 20min then a little break and another 10min. It was the first time she had done this scan without sedation. We made a big deal about it, the nurses gave her some balloons and clapped. Anesthesia showed up about half way through the scan, she still had to be sedated for the bone marrows, but for alot shorter time. She came out of the sedation pretty good. Now, we'll wait for the results, hopefully in a couple of days. Today, she has an ENT appointment. We are just going to discuss these sinus issues and get a game plan for the next time.

On Sunday, Hannah went to a birthday "soiree" for a little girl in her class. All the little girls dressed up fancy and got their nails done and had tea. This is right up her alley. She enjoyed the party.

She also has a new puppy at her mom's house, Luca. Hannah really enjoys animals of all kinds, but especially dogs. She has been having fun with her new friend.

Please continue to pray for our warriors, especially:
Justin- in NY for 3F8 treatment
Michael - his disease has progressed quickly, not many treatment options
Sydney - battling some post-chemo issues
Taylor - getting an MR for eval before next chemo round
Emily - good results of her MIBG, waiting for more treatment

Thank you for your continued prayers.

Wednesday, January 30, 2008 3:02 PM CST

It's hard to believe that January is already over. New Year's Day seemed like yesterday. We hope that 2008 finds all of you doing well so far and send best wishes for a great year ahead.

Hannah has been doing very well. Her sinus issues seem to have resolved, at least for the time being. She does have an ENT appointment on Thursday. Of course, right now, she doesn't really have any symptoms. On Monday, she is scheduled for PET/CT and bone marrow aspirations. Please pray that these scans really happen and that they are clean. We have re-scheduled the surgery to remove the mediport until after her trip to NY, which is the end of March. She will have her brain MRI plus some other tests, and we want to make absolutely sure everything is good before removing the port.

Hannah continues to have great energy and is eating pretty well. She has been riding her bike and running around, acting like a normal 5 year old. She is enjoying school and learning her letters and numbers.

Please continue your prayers for all the warriors and:
Justin-getting ready for 3F8's in NY
Michael-finished radiation for relapse
Sydney
Taylor-doing ok-getting ready for another chemo round
Jenna-doing well

Thank you for your continued prayers

Tuesday, January 15, 2008 8:39 PM CST

I know it's been a bit since the last update, I apologize.
Hannah is doing pretty well. She still seems to have some "shnozies" in her nose, but has stayed pretty mild. She hasn't popped a temp, so that's good. We'll continue to watch her closely. We have finally got her PET/CT & bone marrows for Feb. 4. That's the earliest we could get both procedures scheduled under one sedation. Last week, we had a consult with the surgeon to remove her medi-port. That is scheduled for Feb. 22. Then at the end of March, we are scheduled to be in NY for brain/spine MRI and follow-up with late term effects doc.

This past Saturday, we went to the beach with Hannah's friend Danica. Both of them had fun playing in the sand and flying a kite. On Sunday, we went to visit Jenna. She was down in Clearwater with her parents visiting her Grandparents. We got to visit for a few hours and the girls had fun playing with their dolls and coloring. I enjoyed getting to catch up with Joe & Elise. Jenna looked great.

That's about all for now. Please continue to pray for all the warriors who continue to fight this beast.

Wednesday, January 2, 2008 5:55 PM CST

Happy New Year!!!!
We hope all of you had a wonderful Christmas and wish you the best for the New Year.
As you can imagine, Santa was very good to Hannah (and she deserves it). She received many presents with toys and dolls and games. Sometimes I wonder if it isn't a bit too much. But she sure does enjoy the presents. Christmas Eve we drove up to GrandmaD's house. Hannah slept on the way up. She woke up pretty early on Christmas Day and opened up her stocking presents. After the aunts and uncles arrived, it was down to unwrapping business. We went to her nieces in the afternoon for dinner. We also made the rounds to see different friends. We came back to Tampa on Friday. On Saturday, we went to see Alvin and the Chipmonks. It was actually pretty cute. On Monday, we went to see friends for New Year's Eve. She had fun playing dress up with her friend, Kaylee. On Tuesday, we saw our friends that were down from South Carolina, Jacob & Elizabeth. She always likes playing with them. Dad got to see some of the Gator game. Unfortunately, they lost. (Wait till next year.) She really enjoys seeing all these friends and playing. Her energy was great.

Hannah doesn't go back to school till Jan. 8. So, she'll spend the rest of the week with her mom. We're still trying to get the PET/CT scans re-scheduled. Her sinus issues cleared up, with the help of antibiotics. We hope they stay clear for awhile.

As this New Year starts, there are still many children fighting every day. Please continue to keep them in your prayers and pray that '08 brings them health.
Thank you and best wishes!

Saturday, December 22, 2007 3:08 PM CST

Hannah developed some sinus/cold type symptoms this week. She began having shnozies and a cough. Friday morning, when we got to the Day Hospital to get ready for scans, she was very lethargic and not herself. The docs listened to her lungs and heard and said they sounded "junky". They didn't feel comfortable putting her under sedation. So, the PET/CT and bone marrows were scrubbed. We hope to get them re-scheduled sometime in January. They sent us home with some breathing treatments, as she was already on antibiotics. We talked of admitting her, but the docs said they really couldn't do much more than IV antibiotics, and if it's a viral thing, they wouldn't help anyway. So, we decided to take her home and get her some food and rest. As of today, she has improved. The coughing is minimal and her nose doesn't seem to be running as much. (She also had a couple of bloody noses during the week.) So, we will watch, and pray that she continues on the upswing.

This past Wednesday, Hannah sang with the Kids Praise for the Christmas program at her church. It was a little different, but still very enjoyable. Instead of having the children up in front of the congregation, they had 3 different rooms and we went from room to room. Each room had a different theme; shepherds, wise men, manger. And the kids sang a few songs in each room.

As I'm sure all of you are busy, so is Hannah. Getting about to see her mom's family and then on Christmas, we'll head up to see GrandmaD and Pappy. The holidays are such a busy time. Let's not forget the real reason for the season. God has truly blessed Hannah and this year has been so good. We pray that will continue in the New Year. But we still have many friends that are fighting. Please remember them in your prayers during the holidays.

Hannah's Giving Tree needs ornaments!!! So Please, click HERE to donate to her tree. Then click on "Give up a lunch for me" Her Giving Tree code is: 26850. If you enter this code, it will double the ornaments from your donation. To see Hannah's Giving Tree, click HERE. The monies raised will go to Lunch for Life and directly to neuroblastoma research. And it's tax deductible!

Please send up extra prayers for these warriors:
Emily-Home from NY-scans show residual, but not progressing disease
Justin-Still in hospital recovering from last chemo round
Sydney-Back Home
Taylor- MRI showed residual disease, on another round of temodar-with alot of nausea
Michael Haley - Had surgery last week, unable to resect tumor-unsure of next step

Monday, December 17, 2007 12:18 AM CST

I know I've been behind, but I just added some new pics. Click on the link above the journal, and go to the Nov/Dec 2007 album.

Hannah continues to do great!
She is getting very excited about Christmas. Especially since she's sat on Santa's lap about a dozen times! There was a Santa holding a sign for a store on the side of the road, and she said, "I didn't know Santa was going to be here?". Cute. Anyway, this is her last week of school before Christmas break. So, we baked some cookies for her to decorate and take to school for her classmates and teacher, Mrs. Ho.

On Friday, we drove around and looked at Christmas lights. We got a little lost trying to find one house in particular, that we went to last year. But we tried again on Sunday, and found it. It's a huge display and they let you walk through the yard.

On Saturday, we went to the 6th Annual Badge Bowl. It's a great event that grows every year. We are honored to be a part of it. Hannah got her face painted and sat on Santa's lap. We also got to ride in the police "tank". She liked that alot.

Hannah's Giving Tree needs ornaments!!! So Please, click HERE to donate to her tree. Then click on "Give up a lunch for me" Her Giving Tree code is: 26850. If you enter this code, it will double the ornaments from your donation. To see Hannah's Giving Tree, click HERE. The monies raised will go to Lunch for Life and directly to neuroblastoma research. And it's tax deductible!

Please send up extra prayers for these warriors:
Emily-Just coming home from scans in NY-Pray for clean scans
Justin-Just finished a hard round of chemo
Sydney-3F8 Treatment
Taylor - MRI showed residual disease, on another round of temodar
Michael Haley - Had surgery last week, unable to resect tumor

Thank you for your continued prayers for Hannah and all the warriors.
Wishing all of you and your familys a blessed Christmas!

Thursday, 12/6, 7:37am

Yesterday, Wednesday, was a very special day for Hannah. First, there was an article in the paper about her and the fundraising efforts at her school. It was a nice article, click ARTICLE to read. And in the evening, we attended a special event at St. Joe's called Kids are Heroes, the mayor of Tampa was in attendance. Hannah's principal had nominated Hannah. There were almost 100 kids of all ages that had done something special. They recognized each kid and what they had done. It really made them feel special. We were honored that Hannah was invited.

Sunday, 12/2, 11:05pm
Hannah has been busy!
Last week was back to school after Thanksgiving. She also had swimming and dance. She loves school, but is also very excited when she doesn't have to go. Anyway, she slid back into the routine pretty well. On Friday, her mom and I met a local reporter at Hannah's school that will be doing an article on Hannah and the students at her school that raised money for pediatric cancer research. I'll be sure to post the link.

Friday evening, we went to the annual Children's Cancer Center Christmas Party. As always, they do such a great job making things fun for the kids. Hannah got 2 new bears, and beads, and got this years first visit with Santa. We heard that there was some video of her, at the party, on the local news.

On Saturday morning, we put up the tree at Dad's house. She really enjoys putting on the ornaments and putting up decorations. Then we went to a birthday party for one of her classmates. It was at MOSI, which is a cool science-type place for kids. They got to make a dinasour tooth necklace and slime. Yeah! Afterwards, we met some friends at the zoo, where they put on a pretty impressive display of lights. We rode in the skyride over the zoo and saw all the lights from above. And we got to see some real reindeer and another Santa visit.

On Sunday, we went to a friend's house for a kid's Christmas party. There were about 20 kids of different ages, playing games and having fun. Santa,(me) made a visit to deliver some presents to the kids. I thought Hannah didn't recognize me, but she did. She's pretty tough to fool. Luckily, she didn't say anything to the other kids. So, as far as they were concerned, Santa stopped by their party.

As far as the medical stuff goes, she's doing well. She still has some shnozies, but so far, not too bad. Hopefully, she can get rid of them on her own. We'll have to see. She is scheduled for her PET/CT and bone marrows on Dec. 21. Let's all pray for the gift of clean scans! Otherwise, her energy has been great and her appetite seems to be increasing.

Hannah's Giving Tree needs ornaments!!! So Please, click HERE to donate to her tree. Then click on "Give up a lunch for me" Her Giving Tree code is: 26850. If you enter this code, it will double the ornaments from your donation. To see Hannah's Giving Tree, click HERE. The monies raised will go to Lunch for Life and directly to neuroblastoma research. And it's tax deductible!

Please send up extra prayers for these warriors:
Emily-Started intense chemo for her 3rd relapse
Justin-In NY, latest test showed disease in marrow
Sydney-3F8 Treatment
Taylor - Having MRI today, 12/3
Michael Haley - Possible tumor growth

Please pray for these and all the warriors who are busy fighting. Thank you and God Bless.

Sunday, November 18, 2007 8:39 PM CST

Well, the holidays are here!
Hannah is out of school on Thanksgiving Break. Last Wednesday, they had a Thanksgiving Feast in her class. Her mom volunteered to help pass out the food. On Friday, the PreK-5th graders had a Freezie Pop treat party to to Thank them for their work in raising money for the Loneliest Road. Hannah had her swimming lessons and even did the backstroke, all by herself. And, she lost her first tooth last Monday! The tooth fairy left her $2, which she spent the next day at Target. She has been showing everyone her missing tooth!

We went to GrandmaD's house on Friday to have an early Thanksgiving Day. Unfortunately, PappyD was not feeling too well, but Hannah was able to visit with alot of her uncles and cousins. We had a birthday party for her Aunt Debbie. Hannah always likes birthday parties and presents, even if they're not for her. Afterwards, we had a fire and roasted marshmellows.

We are still waiting for a firm date for her PET/CT and bone marrows. It should be at the end of November or beginning of December. Scheduling these scans is always tough. She did have the start of some "shnozies" on Sunday, but no temp. We'll watch her closely. She may have picked something up from school. She doesn't have any school this week, so hopefully, that will give her body some time to get over whatever this is.

Hannah's Giving Tree needs ornaments!!! So Please, click HERE to donate to her tree. Then click on "Give up a lunch for me" Her Giving Tree code is: 26850. If you enter this code, it will double the ornaments from your donation. To see Hannah's Giving Tree, click HERE. The monies raised will go to Lunch for Life and directly to neuroblastoma research. And it's tax deductible!

Please send up extra prayers for these warriors:
Emily-Started intense chemo for her 3rd relapse
Justin-Awaiting bone marrow results
Sydney-3F8 Treatment
Taylor - Started another round of chemo and having alot of nausea
I know there are many more warriors, and they need your prayers too. Please, continue your prayers for these warriors and their families as they continue their fight.

Wednesday, November 7, 2007 7:14 AM CST

Hannah is doing well.
She did complain of a tummy ache on Monday morning and she hasn't been eating much. So, we'll keep a close eye on that. In our world, any little thing wrong makes us concerned. (It's not from eating too much Halloween candy!)

I did meet with Dr. Wynn and a radiologist last week. We compared her last MRI with her recent one in July. Everything looked the same, stable. What a relief! We are currently scheduling her PET and bone marrows, probably in Nov. If all is good, we'll move forward with removing the port in her chest.

This past weekend, we went to GrandmaD's for a quick visit. It had been a little while since she had seen them. GrandmaD has been pretty busy taking care of Pappy with all his doctor appointments. He is still pretty weak and getting transfusions. But we had a nice visit and went to a small festival at a local church. Hannah wanted me to bob for apples, I declined. Hannah had fun playing with her cousin, Joanna.

The preK-5th graders at Hannah's school have pretty much ended their fundraising. They raised $3,000 for the Loneliest Road! What a great job! Now, we'll see what the older kids can do for Lunch for Life.

Speaking of Lunch for Life, they have kicked off their annual funraising drive as well. If you remember from last year, any donations in Hannah's name put ornaments on her tree. Let's fill her tree with ornaments! You can donate in Hannah's name by clicking HERE.

Please pray for these warriors:
Emily-She has been a friend of Hannah's for a long time-went to NY for routine scans and they found disease in her bone marrow-she has relapsed for the 3rd time-will start chemo in NY
Michael-still in radiation, 2 times a day
Justin-back in Tampa, receiving chemo
Taylor-feeling a bit better from chemo

Thank you for all your prayers and support.

Tuesday, October 30, 2007 7:52 PM CDT

Hannah is so excited about Halloween!!
I think she will actually wear a couple of different costumes. Ariel the Mermaid for sure and who knows what else. Dad may even dress up for some candy!

The results from her MRI showed her brain & spine were clear. Praises! I will be meeting with Dr. Wynn tomorrow to compare these scans, specifically the liver, with the scans from July. Because the scan was done at a different facility, they did not have the most recent scans to compare. We just want to ensure that we're all looking at the same things and on the same page. As always, we will send a copy to Sloan. (Speaking of Sloan, don't forget to support Dr. Kramer in her running of the NYC marathon. There is a link above the journal to donate.)

Dad's presentation at Hannah's school went pretty well. I'm not the best public speaker, but I thought the kids were pretty attentive. Hannah came up at the end and gave me a hug and a smooch, that choked me up. Anyway, the 6th-12th grade students will be doing different things througout the month of November to raise money. We're pretty excited about it. The PreK-5th graders have raised almost $1,500!!!! We are so thankful for all their hard work and support for "our cause".

Just a reminder to write your local congressman about the Conquer Childhood Cancer Act, the time is getting critical. We need ALL of Hannah's Helpers to write and call your representatives so that this bill will get to a vote. Go to www.curesearch.org, they will have pre-made letters to email. WRITE them, RIGHT now!

Please remember to keep these warriors in your prayers:
Michael- starts radiation for replapse disease
Justin- at Sloan
Taylor - coming off a hard round of chemo

Thanks for all your prayers and support.

Tuesday, October 23, 2007 9:20 PM CDT

Hannah had a full weekend.
On Saturday, she went to a bowling birthday party for a girl at her school. Then we went to a Halloween party. She was so cute in her "Cat Girl" costume. All the kids had a great time playing games inside and outside the house. On Sunday, we went to the Fall Festival by the Children's Cancer Center. They always do such a great job! Hannah won a cake in the cake walk and also a prize for her Cowgirl costume. Now, I'm not sure what she'll be on Halloween-Cat Girl or Cowgirl! Anyway, she is very excited about Halloween. Today, we went to the pumpkin patch and brought home one big pumpkin and two very small ones. We painted the big one like a girl. I'm not really sure what the other ones were supposed to be (I think she said brother and sister). But she enjoyed painting them and putting them outside next to the scarecrow.

She will be having her MRI scan on Wednesday, hopefully. We pray that all will go smoothly with the sedation and that the scans will show that she is still clear in her brain. They will also scan her liver to keep an eye on those spots. We pray those will remain unchanged. Her blood work came back good. All her numbers were in normal levels. Her spinal fluid was clear. Praises!

One of Hannah's NB docs at Sloan, Dr. Kramer, is running the NYC marathon on Nov. 4th with Fred's Team. She is raising money for pediatric cancer research at Sloan through sponsors for her run. Please consider supporting her. She was instrumental in getting Hannah on the 8H9 protocol, which is a big reason why Hannah is with us today. Click HERE to go to the donation page. Then click on "Find a Team member" and put in "Kim Kramer". She needs our support!!! Show her what Hannah's Helpers can do!!

On Monday, I will be giving a presentation at her school to the 6th-12th graders about chilhood cancer. They will be doing different fundraising events through the month of November with the proceeds going to Lunch for Life. Her school has been so supportive of our cause. The K3-5th grade classes have raised over $1,000 that will be donated to The Loneliest Road campaign.

Taylor's "special" MRI scan was "inconclusive". It did show some necrosis but also seemed to show residual or recurrent disease. He has been having alot of nausea and feeling very tired. The new chemo regiment really seems to be taking a toll on him.

Please continue to pray for Hannah and Taylor and all the warriors.

Tuesday, October 16, 2007 4:50 AM CDT

Well, Hannah did not have her MRI on Friday.
On Thursday, her eye was red and she had started to have some "shnozies" dripping from her nose. We thought maybe it was pink eye or another sinus infection. Regardless, we could not take her to the MRI place because we didn't want another kid to get sick too. So, instead on Friday, she went to the pediatrician. This was her first visit to a regular pediatrician since before her diagnosis. Anyway, he said it looked like a bacterial infection and started her on antibiotics. Her eye and nose have cleared up. Her MRI has been rescheduled for next Wednesday.

On Monday, she went to the clinic for blood work, an ommaya tap and urine tests. It was a frustrating day as the clinic has changed how they do things. We haven't been there since they changed their procedures. So, it was a bit trying, but she got everything done, but no results yet. So, the rest of this week should be "normal".

She has an exciting weekend planned with a birthday party, a halloween party and the Fall Festival with the Children's Cancer Center. She is still very excited about Halloween and can't wait to be "Cat Girl".

She had a great time at her "T party" with her class. Thanks to Mrs. Ho for all her hard work. They had a show and tell and a special treat, turnovers. Her class raised $200 for the Loneliest Road. Combined with the bake sale, that's almost $500!!! We are so blessed that the students and parents are supporting this cause. We are still working on a fundraising plan for the older students and should launch that by the end of the month.

Justin's surgery went very well, a complete resection. Please pray for his quick recovery.

Taylor did have his MRI last week. It showed that the primary tumor did not shrink, but it did not grow either. Today, he will be having a "special" MRI that hopefully will show if the remaining tumor is dead inside. If so, they may want to go back in and try to remove the rest of it. Please pray that it is dead, dead, dead.

Thank you for your continued prayers for all the warriors.

Monday, October 8, 2007 4:33 PM CDT

Hannah had a low key weekend at Dad's house. She is getting very excited about Halloween, so we went to the store and got some decorations for the house. She has decided on her costume....cat girl. So, we got a kitty costume with pink accents and tail. She also played with her neighbor friend, Kayla, for awhile on Saturday. They both like doing arts & crats.

Hannah will be having her brain/spine & liver MRI on Friday, 10/12. On the following Monday,10/15, she will have a clinic visit for blood work and an ommaya tap. After discussing with our local doc, we decided to do just the MRI now and in January, we'll do a full workup.

Taylor will be having scans on 10/9. Please pray that the chemo & radiation did their jobs and that the tumors are now gone.

I would like to ask that you add another warrior to your prayer list, Justin. He has NB, and he and his family are heading up to Sloan for surgery this week.

In Sunday's paper, there was a story of 4yr old a little girl named Hannah who just gained her wings from brain cancer. In her picture, she is wearing a Belle princess dress and tiera. Just like I've seen my Hannah in many, many times. This little girl would give some of her toys to hospice, for the sick children there. They call it the Ladybug Toy Drive. These kids are amazing. They truly inspire anyone around them. That's why we have to find a cure for them. Because they can't do it by themselves. It is our job to be their voice.

And speaking of which, last Tuesday, I attended the board meeting for the Pediatric Cancer Foundation. It was an interesting evening filled with some emotion. I met some other cancer families who had lost their warriors, but feel strongly about the need to raise awareness. They are some incredibly strong people. One of whom is writing a book about life with a child with cancer. The foundation reported they made over $85,000 in donations for the Cure Kid's Cancer Challenge!!! What a success!! So, Thanks to ALL of you who donated. They also laid out what they are doing with the Sunshine Project, the active research to expedite new treatments. Some of the research doctors were there and gave a presentation on a clinical trial that will be opened (hopefully by the end of the year) because of the work of the Sunshine Project. I was really inspired, because I was actually seeing the result of the money that was raised. I think that the Foundation is an excellent organization that is really doing great work for our warriors. I was honored to be a part of the evening.

At Hannah's scool, they had a bake sale last week that raised over $250 that will be going to the Loneliest Road Campaign. Hannah's class will be having a Tea Party this week to raise money. We are so thankful to the staff and students for their help in our cause.

Thank you for your continued prayers for all our little warriors.

Monday, October 1, 2007 7:14 AM CDT

The Cure Kid�s Cancer Challenge was a great success!!!
Thanks to all of you who donated to the Hannah�s Helpers team. We exceeded our goal and raised just a little over $1,400!!! There was a great turnout for the walk, more than 300 people, and it was a sunny morning. We walked the 1 mile Family walk, and Hannah walked the whole mile! After the walk, she had fun playing in the bouncy house and the fountains and getting her face painted. We saw the Duckworth family, including their newest addition, Allie, and we got to meet some other cancer families. There were 5 families that raised over $5,000 EACH! I�m sure this will become an annual event. I�ll let you know as soon as I hear the total dollar amount raised.

We are also working with Hannah�s school to do some fundraising with the students. On Friday, Hannah�s mom made a presentation during the chapel service to the students of K-2 thru 8th grade. They were shown pictures of Hannah during her treatment and told about neuroblastoma and that other children are still sick and need help. In the coming weeks, the students will be deciding what to do to raise money. The younger classes will be raising money for the Loneliest Road Campaign. And I think the older classes will be raising money for Lunch for Life. This is our first attempt at doing something like this. I�m sure it will be interesting.

Hannah continues to do very well.
Instead of doctor appointments, she has swim lessons and dance class. What a change!
We are working on getting her scans scheduled. We were planning on doing a full set of scans in October, and if all was still clear, backing them down to every 6 months and taking out her port. One of our local docs now wants to change that. So, we have to figure out what�s going on with all that. Her last clear scans were in July.

Quick Update on Taylor: He has completed his radiation/chemo treatment. He still has some days where he doesn�t feel to great. But overall is doing really well. His spirits are still high. He also went on the Cancer Walk with us, and actually ran most of the mile. He will have scans the first week of October. That will let us know how effective the treatment was and what to do next.

Please continue to pray for all these warriors.

Monday, September 24, 2007 5:50 PM CDT

Hannah had a good weekend at Dad's house.
It was a rainy weekend, but we managed to still have some fun. We did lots of arts and crafts. We made some dough and played with that. We watched the Gators win (barely). On Sunday, we went to MOSI, which is a great interactive museum here in Tampa.

Monday was back to school. After, she had an eye appointment. Everything looked good. Her eyesight is good, no cataracts. We'll follow up in a year. Last week, she had her physical therapy evaluation. Her therapist said she was very happy with the progress she has made. We will follow up in 3 months to make sure she continues to make progress.

Thanks to all of you who have donated to the Cure Kid's Cancer Challenge. For those of you who haven't, please consider doing so. To donate, click HERE. The walk is this Saturday, Sept. 29th. So please make your donation before then.

Also, the dad's on the Loneliest Road Campaign are still making their way across country and are scheduled to arrive in Washington DC this weekend. They could use your support also.

I don't like to keep asking for money/donations, but this is a time when there is alot going on because it's Pediatric Awareness Month. And let's face it, research takes money, and alot of it. And research is the only way we will find better treatments and a cure for these kids. I sincerely appreciate all of the support already shown by all of you.

One more thing, don't forget to write your local congressman and tell them to support the Conquer Childhood Cancer Act. You can go to CureSearch, and there they will have pre-made letters and links to find out who your representatives are. This legislation will increase federal funding for pediatric research.

Thanks again for the continued prayers and support for Hannah and all these brave warriors.

Monday, September 17, 2007 8:21 AM CDT

We're back from NY!!!
Our trip to NY was smooth. The flights were on time and event free. We got into NY about 9p on Wednesday. Thursday morning we walked down to NYU and met with Dr. Rosen, neuro-psychologist. She gave Hannah a cognitive/IQ test which consisted of showing Hannah pictures and having her pick the correct picture in the set, playing with some blocks that had different colors to match a picture and some verbal questions. She did really well. Then we took a lunch break and went to a nearby park (see new pic). After that, we went back, but Hannah was pretty tired, so we didn't get much done. She fell asleep on the walk back to Ronald McDonald House. One of Dad's friends came for a visit and we went to Cafe Lucas for dinner. They take great care of us. Hannah ate alot of noodles and chicken tenders. On Friday, we met with Dr. Modak and talked about immunizations, we have to decide whether or not to do this. Unfortunately, Dr. Kramer was not in clinic. Then we met with Dr. Sklar and his nurse for over an hour. We discussed all of Hannah's treatment and what kinds of problems certain treatments cause. We discussed her lack of growth and what if anything can be done. We first have to determine in there is a deficiency in growth hormone or if her spine is not growing because of the radiation. We will return in 6 months for her to be remeasured. We got some good information and learned what to look out for, and it's alot.

Dad came home on Friday. Hannah and her mom stayed in NY for a couple of days and visited with some family there. They came back on Sunday night.

So, Hannah is back at school today, with swimming lessons after. Tomorrow after school, she has a dermatologist appointment because she has some warts developing. The antibiotics seems to have kept her sinus infection in check. So that's good.

Thank you for your continued prayers for Hannah.
Don't forget to pray and support the Dad's of the Lonliest Road.
Check out the link above the journal to donate to the Cure Kid's Cancer Challenge.

Tuesday, September 11, 2007 8:35 AM CDT

Sorry for the gap between updates.
Hannah is doing very well.
She did start to show some signs of sinusitus this past Friday. So, we started her on the antibiotic, which seemed to help clear her up over the weekend. We were concerned that it could develop into full blown infection and we would end up in the hospital, instead of heading to NY on Wednesday. But it looks like we are on track for the trip.
We'll leave in the late afternoon on Wednesday. She has an appt with Dr. Rosen, neuro-psych, on Thursday morning for a neuro-cognitive/IQ test. That should take a few hours. Then on Friday is Dr. Sklar, late-term effects. This will basically be a consult to discuss what types of tests to have done in the future and to look out for possible secondary issues. Then we'll see the NB team in the afternoon. Dr. Kramer emailed and said she was looking forward to seeing Hannah. I'll try to post from NY.

Yesterday, Sept. 10, was the start of the Lonliest Road campaign. I really admire these dads and what they are doing. Please consider donating and asking your friends to do so as well. It is an inspiring story and a special cause. Please pray for a safe and successful trip.

Tuesday, August 28, 2007 8:51 AM CDT

Hannah continues to do very well.

Her appetite is pretty good. But still having trouble putting on weight. I think it's because she's pretty active now and is burning up what she eats. Her sinuses have been clear, Yeah!

She is really enjoying school. Her new teacher says she's doing great. She is also excited about starting dance class, which should be in a week or so. We had to change her swimming lessons because of scheduling. For now, she'll be going once a week. We'd like to do more, but as long as she's staying in the water, hopefully she'll learn more.

Our trip to NY is in a couple of weeks, Sept. 12. We've got all the medical records up to Dr. Sklar's office. So, now we just wait till then.

September is National Pediatric Cancer Awareness Month. Please consider making a donation to Lunch for Life, or Alex's Lemonade. Donations will go directly to research for neuroblastoma. Or to Lonliest Road-Dad's who are riding cross country to raise money for new treatment and awareness to childhood cancer. And write your local congressmen about increasing Federal funding for childhood cancer research. Money & research are the only way to find a cure. Tell your friends about it, ask your friends to tell their friends.

Please pray for:
Lillie -- She passed on Tuesday, Aug 28 - Now free from pain

Taylor -- Finishing up radiation and chemo this week - then scan and evaluate

Sam -- He is NED, but going through antibody treatment

Emily--Back in school, waiting for vaccine

Nick -- At home doing chemo for relapse

Sydney--On chemo, on her Birthday - (Her dad is one of the riders on the Loneliest Road campaign)

I know there are many other warriors that need your prayers too. Thank you for all your prayers and support.

Tuesday, August 21, 2007 8:03 AM CDT

Hannah went back to school on Monday.
She is in K-4 and Ms. Ho is her teacher. She seemed to be excited to go back to school. It is the same school she went to last year, so there a couple of the kids that were in her last class with Ms. Tomlin. After school, she went to physical therapy.

We've had to change her swimming lessons around because of school. Starting next week, she will have swimming on Monday and Wednesday. We are also looking at getting her into a dance class. We think she would enjoy it and it would be good excercise for her.

We will be heading to NY in a couple of weeks, just for a couple of days. We'll meet with the NB team and the late term effect doc, Dr. Sklar and she will also have a neuro-cognitive test done (because of the cranial radiation).

Updates:
Lillie - Her disease has progressed into her liver
Taylor-On his last week of radiation treatment and doing good
Lonliest Road Campaign - To Support these Dads and Donate

Please keep all the NB warriors in your prayers.

Tuesday, August 14, 2007 9:30 AM CDT

Hannah has been doing very well.
She did have a clinic visit on Monday for monthly blood work, plus some blood tests for the endocrinologist.

She spent last week on vacation with her mom. They made a visit to Nick hotel also. Hannah got to see Dora this time. She's been going to swimming lessons and physical therapy too. This week she'll be spending time with Grandma Buhrke before school starts next week. There is school orientation on Friday where we will meet her new teacher, Ms. Ho. She seems to be excited about going to K-4.

I am preparing for our trip to NY next month by trying to get all kinds of medical records together to send to Dr. Sklar at Sloan. They would like to see all the treatments she has received over the past 3 years. Then they will review the records to determine what types of things we need to be watchful for and any additional testing. One of our concerns is that she really hasn't physically grown in the last year. We will discuss what, if anything, we should do at this point.

I would like to tell all of you about some amazing cancer dads that are planning a cross-country bike ride to raise money for antibody research at Sloan. Sydney Sims' dad is a part of this ride. We met Sydney at the Fashion Show, she has been treated at Sloan and she continues her battle against the nb beast. Please click HERE to donate to this important cause, send this website to all your friends. The ride will be in Septemeber, which is National Pediatric Cancer Awareness Month. Spread the Word!!!!

Taylor is starting his 5th week of treatment. His is doing pretty well, but the treatment is definetley starting to wear on him. He has been having some nausea lately and his hair has been falling out. But his spirits are still good.

Please keep Hannah, Taylor, Sydney, Lillie, Emily Adamson, and all the Warriors in your prayers.

Friday, August 3, 2007 9:41 AM CDT

It's been a busy birthday week! This is the first chance I've had to update. Thanks to all of you who sent cards.

Hannah had a little birthday party on Saturday, mostly family and some of her friends. It was at a bowling alley and they did a great job. All the kids had lots of fun! I'll try to post some pics soon. On Sunday, we headed over to the Nickelodeon hotel in Orlando. Her friends Kayla and Trevor and Kaylee, and more, were there. There was 17 of us total. They had lots of fun playing in the great pool area. Hannah and Kaylee wanted no part of the "slime" that they dumped out of a great big bucket by the pool. Hannah got her hair braided just like all the other girls. It was a fun couple of days.

On Tuesday, we went to the endocrinologist. Hannah really hasn't grown in the past 6 months. So, we'll be consulting Dr. Sklar in NY. I think we'll just conintue to monitor. Then we went and had an echo done. Her heart function is slightly improved and is in the normal range. On Wednesday, she had physical therapy in the morning and then a hearing test. Her hearing is good, but there is some loss in the higher frequencies. This is unchanged from her last hearing test. Then a quick visit to the ENT just to make sure things were still clear in her nose. There is a little bit of clear/white "shnaz" up in her nasal passages, but her nose is not running. So, hopefully, it will continue to stay good. Thursday morning was swimming lessons. She really is doing well with her swimming.

Thursday afternoon, GrandmaD and Pappy came down for a quick visit. This morning, we took them to the airport. They are going to NY for a wedding and to visit family. Today, I hope we just chill around the house.

Taylor continues with his treatment and is doing pretty well. His hair is starting to fall out now, but his spirits are good.

Please continue to pray for Hannah, Taylor and all the warriors.

Thursday, July 26, 2007 10:21 AM CDT

Happy Birthday Hannah!!!!!!!!!!
Hannah woke up yesterday very excited that she was 5 years old. Dad was able to take the day off work to spend with her. I gave her one present to start the day, a "swimming" mermaid from a friend. I told her she would get the rest of her presents at her party on Saturday. Then she played with her friend Kayla for awhile. They both were dancing to Hannah Montana on TV, it was pretty cute. Then lunch and a nap. After the nap, we went to physical therapy. Miss Tracey worked her pretty hard. So, it was off to Build-a-Bear. Kayla and her Mom met us there. It was my first time there...man...why didn't I think of that idea. Anyway, Hannah picked out a pink bear with a "rock star" outfit and named her Pinky Pie. Funny, Kayla picked out the same bear with the same outfit. Anyway, Hannah really enjoyed it. It was kind of a low key Birthday, but I tried to make it specail. She is really excited about her party on Saturday and then on Sunday, we are going to the Nick Hotel in Orlando for a couple of days with some of her friends. It should be fun...for them, exhausting for us!

She is doing great all around. It's truly amazing to see her running and jumping around like a "normal" kid. Considering what the past 3 and 1/2 years of her life have been like, she truly deserves all the happiness we can try to give. I am still so thankful that she really has a sweet spirit. And funny too! I am thankful to God every day for her, and that we get to enjoy being with her. This is the first birthday in a couple of years that she was not in a hospital getting treatment. Praises!!! We are still not "out of the woods", you never really are with this beast. But at least now, we don't feel buried by the trees!

Unfortunately, there are many kids who are in worse places. Please, Please, pray for these warriors: Lillie, Taylor, Emily, and Nick, just to name a few. They are brave beyond words and need our prayers, (their moms and dads too!)

Thank you all for your continued prayers and support and Birthday Wishes! God Bless.

Tuesday, July 24, 2007 8:52 AM CDT

Only 1 day till Hannah's 5th Birthday!!!
She is very excited about having a birthday. So am I. If you recall, she has spent the last 2 birthdays getting treatment in NY. This year she will not be in the hospital. She will have physical therapy tomorrow, but afterwards, we'll go to Build-a-Bear so she can pick out her own bear.

She continues to do very well. Her sinuses are still clear. Her energy has been great. We've got a clean set of scans. All is going well.

Taylor conintues his radiation/chemo this week. He did have some pretty bad nausea last week, but that seems to be improving. His spirits are pretty good.

Please continue to pray for her and for Lillie & Taylor and All the warriors.

Monday, July 16, 2007 9:53 AM CDT

Hannah is doing very well.
She had her scans on Thursday and Friday. We have the results of the MRI-brain/spine are clear, the liver spots are still present but unchanged, the sinuses appear clear. The PET/CT has also come back clean! Praises!!! Her blood work looked good, red blood, white blood and platelets. The immunity tests came back as well, her immunoglobulin level is ok, but her T-cell count is low. According to the doc, we just have to wait to see if they will come back up. These are depressed due to all the chemo treatment but hopefully will increase as time goes on.

Over the weekend, we went to the Florida aquarium with some friends. It's a nice place to spend the afternoon. They have a water play area outside that she really enjoys. Sunday, we stayed around the house and did some art projects and a nice long nap.

She continues to be very excited about her upcoming birthday. She is really quite funny with, "Daddy, maybe you can get x or y for my birthday". And of course, the x and y change every 5 to 10 minutes. As does her choice of party decorations, Princess..no, Strawberry Shortcake...no, My Little Pony...no, Barbie. I guess a decision will have to be made shortly.

Today, she went back to summer camp. She hasn't been in couple of weeks because of vacations and scans. She seemed to be glad to be going back. After camp today, she will go to physical therapy for a mini-evaluation. She hasn't been to PT since April, but she has been very active at home. We wanted to see if the therapist still thinks she needs more treatment. Tomorrow, she has a follow-up with the ENT doc who will review her sinus CT to confirm if the nasal passages are completely cleared out. She has finished the antibiotic and bactrim treatment, so now it will be a wait and see thing.

Please pray for Taylor. He starts 6 weeks of radiation treatment today along with chemo. His spirits have been really good, but this will be a difficult time for him and his family.

I also ask that you pray for Lillie. She's a little girl getting treatment at Sloan. She recently had an unexpected brain bleed due to some tumors that just developed. I know her family could use the uplifting power of prayer.

Thank you for your continued prayers for Hannah.

Monday, July 9, 2007 2:31 PM CDT

Hope all of you enjoyed your 4th of July celebrations. We live in the Greatest country.

Hannah is doing very well.
She appears to be "symptom free" of sinusitus. Her energy is great. Her appetite has fallen off a little, maybe from the antibiotics. She will have scans this Thursday and Friday-- MRI, PET/CT, ommaya tap. We will not be doing bone marrows this round. We feel that doing those every 6 months is sufficient. We will also get a look at her sinuses on the CT, so we'll know if the antibiotics have totally resolved the infection. I'm always a little skittish around scan time, there's so much riding on them each and every time. Plus, these are the first scans since she has been off accutane. Anyone remember last time off accutane? Please pray for clean scans and that the sedations go ok.

Hannah's attention is focused on her upcoming birthday and turning 5 years old. I admit that it is quite a milestone for our little warrior. She is a miracle and a blessing wrapped into one cute little package!

Taylor is getting a break for a little bit. He is scheduled to start radiation/chemo by the end of the week. His spirits are good. We spent the 4th with him and his family. When they get a website going, I will share the link.

Thank you for your continued prayers.

Monday, July 2, 2007 7:19 AM CDT

Hannah was discharged Friday afternoon.
The docs sent her home on antibiotics. Although we're glad she was able to get out of the hospital, they sent her home on the same antibiotic, clindamyacin, that they've ordered for her previous cases of sinusitus. We're afraid of the same result: that it will clear up most of the infection, but not all of it, and it will come back again. I will say, that it can be very frustrating, especially when multiple docs are involved and even they disagree about treatment. We will try to get some clearer answers this week from the ENT doc, as she was out of town at the end of last week. So, we'll just have to see what happens this week.

Hannah was improved over the weekend. She didn't have any "shnaz" in her nose, and her cough cleared. She had a great time at Eli's birthday party, which was a gymnastics themed party. She had great energy while playing.

This week, she will be back to Camp Bayshore. We hope she will feel good and enjoy her time back at camp.

Taylor is back at home after having surgery this past Tuesday to put shunts in his head to drain fluids. He had to stay in the hospital for a couple of days afterwards because of nausea. But he is glad to be back home now. If all goes well, he will be starting chemo & radiation treatment in a couple of weeks. Please remember him and his family in your prayers.

Thank you for your continued prayers.

Friday, June 29, 2007 11:57 AM CDT

Well, so much for good timing.
After the sinus procedure on Tuesday, that night, Hannah started running a temp and having one of her eyes almost swollen shut. We took her to the ENT doc on Wednesday, she suggested that we get Hannah admitted and on IV antibiotics. Evidently, the sinus lavage may have stirred up whatever was left behind and the bacteria got into her eye. It's only a short trip from there to the brain. So, Hannah was admitted late Wednesday afternoon. There was a bit of disagreement between the docs of what antibiotic to use. They started her on vancomyacin, to which she immediately had a reaction. Her face, mostly her lips, swelled up pretty big. So, we got another drug to combat the reaction and then started cephapime and clindamyacin. She did much better with those. By Thursday, she was looking much better. The ENT doc called us with preliminary results on the culture taken on Tuesday, there definetely was a bacteria there, but until we have final results, we don't change the antibiotic. She did refer a infectious disease doctor who will hopefully come by today to let us know what type of bacteria and what type of antibiotic. If we don't get those results by the end of today, she may have to stay inpatient until we can get them.

Overall, she's doing ok-no more temps. But she is not happy about being in the hospital. She is afraid she will miss her friend's, Eli, birthday party on Saturday. We've asked the docs for a pass if she is still inpatient, and they agreed. Anyway, that's about it. What we thought would bring us closer to resolution may have aggrevated the situation. But she'll get through and hopefully we will be able to give her a more targeted antibiotic to completely wipe out the bacteria.

Please continue to pray for Hannah and ALL the little warriors.

Tuesday, June 26, 2007 4:37 PM CDT

Today is National Childhood Cancer Awareness Day in Washington DC. Many families have gathered there to try and get the government's attention to childhood cancer, and get increased funding. If you haven't already done so, please go to the link above the journal to write your representative to support research funding for childhood cancer, then ask everyone you know to do the same. Without more research, many more children will die. Our government spends billions on less important issues. If we ALL speak up, maybe they will hear us.

Hannah is doing pretty well.
She has developed what looks like another sinus infection. So, she's felt a bit down. But for once, timing was on our side. She was already scheduled to have the sinus procedure today, which she did. Everything went fine. The doc sucked out all her "shnozies" and sent the sample to lab. If they can determine the type of bacteria, we can use a more targeted antibiotic in the future. Hopefully, this procedure will clean her out for good and we won't have these sinus issues anymore. If it doesn't, she may have to have another procedure where they open up the drains in her sinus'. We'll just have to see.

Hannah and Daddy had a fun week of vacation. We visited with GrandmaD & Pappy, we visited with friends, we went to a birthday party for her friend Kayla and we went to Sea World. We also had some time to hang at home. This week, she'll be on vacation with her mom.

Our friend Taylor is doing ok. He had to have another surgery yesterday to put shunts in his brain so the spinal fluid will drain out of the skull. He had a rough nite and still isn't feeling too well. This will also delay the radiation treatment that he needs to start. Please pray for him and his family.

Thank you all for your prayers and concerns, they are appreciated.

Tuesday, June 19, 2007 8:52 PM CDT

Hannah is doing great.
But before I continue about her, I have to share that the cancer beast has struck again. A close friend of the family, Taylor, a 15yr old boy, was diagnosed last week with brain cancer. He had been suffering from double vision & headaches. Last Tuesday, an MRI of his brain showed a large mass and other smaller spots. He had surgery on Wednesday at All Children's to remove the primary mass. They were able to get the majority, but not all of it out. The smaller spots are in areas of the brain that are not operable. He has recovered from the surgery and was able to go home today. He will start radiation treatment in a couple of weeks. Needless to say, this news was devastating to him and his family. Please keep them in your prayers as they begin to do battle. We are collecting money to buy him a laptop so that he can stay "connected" during his upcoming hospital stays. Anyone interested in donating, please email me at madtpa@yahoo.com, and I will provide the info.

We just got back from a visit to GrandmaD's and Pappy's house for Father's Day. We had a cookout and cake. Pappy has not been feeling well. But he was able to be up and about for the picnic. He has been very weak because his marrow is not making red blood cells. He had a bone marrow aspiration, unfortunately, not enough of a sample was taken for valid testing. Please include him in your prayers as well. As always, Hannah enjoys seeing the birds and dogs at GrandmaD's. While there, we also went to the museum at UF. They have a beautiful butterfly aviary, where literally, thousands of butterflies are buzzing about. Hannah was disappointed that no butterflies landed on her. We also got to visit with some friends, Savannah and Garrett. We went swimming in their pool. Hannah has really become quite comfortable in the water. It's great to see.

Her energy has been great. She has a little bit of "shnoz" developing in her left sinus. Hopefully, it won't turn into anything before her sinus clearing procedure on 6/26. She has a clinic visit this week for routine blood work.

We will continue our vacation with some more visits to friends. I will update as soon as possible.

Thank you all for your prayers.

Tuesday, June 12, 2007 6:23 AM CDT

Hannah continues to do very well.
She has just finished her 6th and final round of accutane. YEAH!!! She really tolerated the med well. Some dry skin and a little bit of sleeping problems, but that's it. She had her follow-up with the ENT doc, who took a look into Hannah's nose. She said there was still blockage in her left sinus and suggested a procedure to clear out her sinus cavity. It will require sedation. We think that it will be a good thing to do in hopes that it will help stop all the sinus infections. That procedure is on 6/21. We are also working on scheduling the next round of scans in July. We want to closely monitor the liver "spots" and make sure they are stable. I guess that's really all we can do for now.

Hannah has been enjoying Camp Bayshore at her school. They do a great job of having activities and special guests, like Elmo and clowns. This weeek, she is in Art Camp at a pottery/paint shop. We think she will really enjoy this because she loves arts/crafts and painting.

She is really coming along great with the swimming lessons. We went in the pool over the weekend and she was putting her head under water and picking up dive sticks off the bottom step. And she's much more comfortable in the water. It's so good to see.

Her 5th birthday is coming up in July, she reminds me almost every day that she is going to be 5. That is her favorite number, 5.It's so hard to believe that she will be 5. We are so grateful and thankful to God that she is with us and is doing so well. But there are many others that are not.

Today marks one year since Jacob entered heaven. Please take a moment to leave a word for Heather and Donny, as I'm sure today will be difficult for them.

Please continue to pray for Hannah and the other warriors:
Michael in CA- relapsed
Sydney from FL - relapsed, just had surgery in NY
Emily from FL - 2nd relapse-post radiation
And of course, Penelope's family as they struggle with each day without her.

There are so many more that fight each day for life. If you haven't already done so, please write your congressional representative and tell them to increase funding for childhood cancer research. There is a link right above the journal.
Thank you and God Bless.

Tuesday, June 5, 2007 7:11 AM CDT

Hannah is doing very well.
Sorry about the time between updates.
Hannah is on her last cycle of accutane, that will end this weekend. She has had a some problems sleeping through the night, but otherwise has really tolerated the med very well. Her energy has been really good as well as her appetite. She's been on an ice-cream kick lately, even wanting it for breakfast.

The follow-up with the ENT doc was rescheduled for later this week. The sinus CT appears to show some blockage on one side. We'll have to see what the ENT doc wants to do. If it's a surgical procedure, we will carefully consider. She has a dentist appt this week as well for cleaning.

She is doing really well at her swimming lessons. She has moved into a small group class. She is wearing her goggles and diving under the water. She was a bit hesitant about the lessons at first, but now seems to be enjoying them.

She is also enjoying Camp Bayshore at her school. She has adjusted well to the new kids and teachers. It's a fun program with lot's of activities and playtime.

Please continue to pray that Hannah remains clear of the beast and pray for all the other little warriors.

Monday, May 21, 2007 7:52 AM CDT

It is with great sadness that I must tell you that Penelope gained her angel wings this past Saturday. She was an inspiring little girl who fought like a warrior. She is now free from pain and flying free in the clouds.

Hannah is doing very well.
She spent a low key weekend at Dad's. We went to the beach on Saturday and watched the sunset. She loves to play in the sand and chase the seagulls. We played in the spriklers in the backyard. We did lots of coloring and crafts. Her appetite is very good, which we like to see. Her energy is good as well. She wants to "race" everywhere we go.

On Monday, she will go to her swimming lessons, then to the clinic for blood work and then a sinus CT. She has finished her antibiotics, and her nose and cough are completely gone. The CT will show if there is some kind of blockage that keeps causing the sinus infections.

Tuesday is her year-end class party at school. Wednesday is her last day of school for the year. She has really learned alot at school. She knows her alphabet and the sounds of the letters. She's counting pretty good too. Best of all, she enjoys going to school (most of the time).

Please continue to pray for Hannah and special prayers for Penelope's family.

Tuesday, May 15, 2007 8:58 PM CDT

Hannah is doing much better.
The new antibiotic has worked well to clear up her cough and runny nose. She will finish the antibiotic on Sunday the 20th. On Monday the 21st, she will have a clinic visit for blood work and a sinus CT to make sure the sinusitus has cleared and to see if there is any other blockage. She has completed her 5th round of accutane. Only one more to go!

She is enjoying her swimming lessons and really progressing with getting comfortable in the water. She's even going under water too.

Her school will be ending next week. They are having a party on Tuesday. We have appreciated Miss Tomlin, her teacher, and all the care she has shown for Hannah during the past year. During the summer, she will be attending Camp Bayshore at the same school and taking some vacation time. We hope to have some fun and memorable times. It's nice to be able to think in terms of making plans.

Thank you for your continued prayers for Hannah and all the other little warriors. I ask for special prayers for Penelope and her family. She is in alot of physical pain, from the disease. And her family is in the emotional pain of only being able to watch her suffer.

I hate this damn disease.

Wednesday, May 2, 2007 5:43 AM CDT

Hannah still has her cough and runny nose.
She had a follow up with the ENT doc on Tuesday. She switched her onto a different antibiotic. She will be on it for 20 days. Hopefully, it will be more effective in clearing her up. The ENT doc also suggested surgery to clear her nasal passage if this doesn't work. Needless to say, we'll have to consider that carefully. She is on her 5th cycle of accutane and still tolerating it remarkably well. Only one more cycle left, YEAH!

She has really started to enjoy her swimming lessons. She has been going under the water and laying on her back. Making real progress. Still working with the insurance company to get authorization for more physical therapy. So, the swimming is a great interim replacement.

I met with Dr. Wynn on Monday and reviewed the latest scans. We did confirm that the spots are still the same ones that started last year and they are approximately the same size and location. Great News!!! So, we will continue to monitor them with scans.

Please, continue to pray for Penelope. She has been in alot of pain. For those of you who get the Wall Street Journal, there was a front page article about her on May 1. And pray for Emily, she is having radiation treatments, twice a day, all this week. Thank you for your continued prayers for all the NB warriors.

Sunday, April 22, 2007 9:48 PM CDT

Hannah had her scans on Thursday and Friday.
We got some results on Friday. Her brain and spine MRI were clear! Praises!!! Her spinal fluid was clear! Praises!!! The spots in her liver were still present, but stable and unchanged from her last scans. So, we will continue to monitor them. We do not have results from bone marrows or PET yet, hopefully on Monday. I still have to talk with the docs about all the results, but are certainly glad with the preliminaries.

She also had an xray of her lungs which showed some infiltrates. The MRI showed signs of sinusitus. So, we started her on some antibiotics and breathing treatments. We hope this will clear up the nagging cough she has had for awhile now. She handled the sedations pretty well. She did have some residual soreness from the bone marrows, but seemed to recover pretty well. By Saturday, she was running and bending almost normally.

Over the weekend, we went to an event sponsored by the Children's Cancer Foundation. As always, it was a great event and Hannah had fun doing arts & crafts and getting her face painted. We also went to a circus/festival where she got her face painted again and rode some rides and fed some goats and giraffes and had a pony ride. She also did some swimming in the neighbors pool. So, all in all, it was a fun, but busy weekend.

I've added some new pics. Click on the link above the slide show. Sorry, I've been delinquent in doing so. I'll try to do better.

Please continue to pray for Penelope as her disease is rapidly progressing, and her parents as they are in pain too, as they watch helplessly. These little warriors are brave beyond words.

Tuesday, April 17, 2007 2:58 PM CDT

Hannah has been doing ok.
She still has this cough that just won't go away. We're a little concerned that it may affect her ability to be sedated for her upcoming scans on Thursday and Friday. But we'll have to see. Otherwise, she's been doing well.

She has started swimming lessons. The physical therapy is on hold till we get some insurance issues cleared up. But her energy has been good.

One of our friends, Emily,was recently in New York for surgery on a mass. Unfortunately, it was determined to be NB. Please visit her website and offer your support as she continues her fight. Also,please pray for Penelope. Her disease is progressing rapidly and I fear she will be an angel soon. Don't forget to pray for clean scans and bone marrow results for Hannah.

Monday, April 9, 2007 6:19 PM CDT

Hannah had a great Easter weekend. We hope you did as well.
We headed up to GrandmaD's for Easter. On Saturday, we went to a "retirement home" for horses, where they care for old horses. We took a bag of carrots and fed lots of horses and ponies. It was a beautiful day to be outside.

On Sunday, we went to church in the morning, where everyone there was so glad to see her. Afterwards, we had a nice ham dinner. Then, the egg hunt. Hannah has already done a couple of egg hunts, but she really enjoys them. Even though she was the only one hunting eggs, she had a good time.

On Monday, she didn't have school, but she did have physical therapy. She has done really well and they completed their evaluation. Her therapist said she still needed some work with her gross motor skills, but she really progressed in other areas. So, she'll drop down to once a week at physical therapy. She will be starting swimming lessons soon. We think the physical activity from swimming will help with her overall motor skills, as well as learning to swim.

I added a picture from the Fashion Show to the top of this page. I will try to add some more pics soon.

We ask that you continue to pray for Penelope and Michael. As well as Emily, they had some concerning spots during her last round of scans and they are trying to determine what's going on. Thank you for your continued prayers for Hannah.

Monday, April 2, 2007 6:53 AM CDT

Hannah has been doing very well.
Last week was back to school after spring break. She is really doing well on her letters and numbers. She is recognizing them on signs as we drive. She is a very sharp girl.

Last Tuesday was the Fashion Funds the Cure event. It was a very exciting night, as well as emotional. They were 27 girls who were the cancer models and walked the runway. It was inspiring. Hannah did a great job down the runway. But I think there were so many people she didn't even see us in the crowd. The event raised over $160,000 dollars for research! And one very generous sponsor offered to pay for all the outfits the girls were wearing! So, Hannah will keep her pretty pink dress. I think she'll wear it for Easter. I will post pics soon. Thanks again to the Pediatric Cancer Foundation for all they are doing to help find a cure and also for inviting Hannah to be a part.

On Sunday, we went to a Egg hunt/picnic with some friends. We played lots of games, with sack races and egg races. The Easter Bunny showed up and left lots of eggs for the kids to find. It was a fun day with friends.

Hannah has started her 4th cycle of accutane. She has really tolerated the last rounds very well. We hope this continues. Her appetite has been pretty good and so has her energy. She is still going to physical therapy twice a week. The therapy has really helped her strength and she has done really well. They will be evaluating her to see if we can drop to once a week. Her next round of scans/tests are scheduled for April 19 & 20. We will be doing a MRI of her liver, along with the brain & spine. As well as a PET scan, ommaya tap and bone marrows.

Please pray for Penelope as her disease is progressing and she is in pain. Pray for her family as they endure seeing their angel in pain. Pray that her suffering will be short. Visit her website and leave some encouraging words. Also, continue to pray for Michael as his disease is back. His parents are deciding on what type of treatment would be best for him.

These kids, and the many other children fighting cancer, are the bravest souls on this planet. They fight to live, they fight to play. All of us that have been touched by this awful beast wish we could take on their pain. But that is not how it is. Each day is precious, each moment. I feel that we are blessed that Hannah is doing so well. But I also feel that we could just as easily be facing what these parents are facing. This battle is for life.

Monday, March 26, 2007 7:22 PM CDT

Hannah continues to do well.
She spent the last few days of spring break with dad. GrandmaD and Pappy came down. Then we went to visit one of dad's cousins who was down from Pennsylvania and staying on the beach. We looked for shells, fed the seagulls (one of GrandmaD's favorite things), played shuffleboard, and watched the sunset. Over the weekend we went to Naples to visit the girls that went with Hannah to Disney with last year, Gabby and Taylor. They had lots of fun playing. They had not seen each other since that trip, almost a year ago. Today was back to school. She was saying that she didn't want to go back, but once we got there, she was excited.

The Fashion Show is on Tuesday, with the proceeds going to the Pediatric Cancer Foundation for research. Hannah will be making her modeling debut down the runway. They usually have a really good turnout and raise money with the tickets and silent auctions. Saks 5th Ave shuts down the store early for the event. I think she will really enjoy the experience. I will post pics, I promise.

The singulair seems to be helping with the running nose and cough. Both seem to be almost gone. Her energy has been good as well as her appetite. She is still picky, but seems to have more desire to eat.

Thank you for your continued prayers, and please continue to pray for Penelope and Michael.

Tuesday, March 20, 2007 7:12 AM CDT

Hannah is doing well.
She went to an ENT doc last week, for the runny nose and cough. The doc thinks she may have some allergies, so she put Hannah on singulair. It seems to be helping with the nose, but the cough is still hanging on. She just finished her 3rd cycle of accutane, 3 more to go.

We still do not really understand why the spots in her liver did not show on her last CT. So, on her next round of scans, in April, we'll do an MRI of her abdomen, along with the brain & spine.

Her school is on spring break this week. I took some time off work to spend with her. GrandmaD is coming to visit for a couple of days. We've got some fun things planned.

Thank you for your continued prayers.

Monday, March 12, 2007 8:47 AM CDT

Three years ago today marked the beginning of Hannah�s battle with neuroblastoma. To say that it has been a long and hard road thus far, would truly be an understatement. She has endured so much, but with such courage and strength. There have been some very dark days on this journey, but there are also reasons to have great hope. We are blessed that she is doing well and is such an inspiration.
I saw the poem below on another website. I think it is very powerful.

The medals on our chests
Are broviacs for meds
Helmets won't stay on
�Cause no hair is on our heads.

Our weapons of destruction,
We take every day.
We fight the battle within us,
While we struggle on to play.

We fight with honor and courage,
No Marine could do as well.
We are only children,
Living through this hell.

So bring on the medals,
The purple heart of war,
The gold cross, and the silver star,
To place upon our scars.

For we are the children of cancer,
No one has fought so hard,
But every day we struggle on,
Our LIFE is our REWARD!

We have met many children on this journey. Some have lost their battle and have passed on, and are now free from pain. Many others are still fighting against this beast, their parents desperately seeking new and better treatments to save them. It is a mission, every moment of every day, to fight for them. They all need your daily prayers.

That day, three years ago, I will never forget. It�s a day that has changed all of our lives forever. It�s a day that sent us down one of the hardest paths a parent must face. It�s a day that I wish never happened to us, or to anyone, anywhere. Unfortunately, too many children and families experience a day like that, about 12,500 children a year are diagnosed with some form of cancer. Research is the only way to increase their odds of survival. Sadly, our government has reduced funding for research for childhood cancer. I encourage all of you to write your local congressman and demand that they support increased funding. There is a link above the journal that will take you to CureSearch, where they already have letters made, and you just email them. I also encourage you to give to Lunch for Life, an organization devoted to neuroblastoma research.

Another great organization is the Pediatric Cancer Foundation here in Tampa. They raise money for research and awareness for our childhood cancer. They have an annual �Fashion Funds the Cure� fundraising event. They invite some girls who are fighting cancer to �model� and walk the runway in a fashion show. This year, they asked if Hannah would like to be a �model�. I thought she would since she loves all the girly things. So, on Sunday, they had the all the girls and their moms in for a �Makeover Day�. Hannah and her mom were treated to professional hair and make-up treatment, as well as a manicure. Then Hannah was able to pick out a dress to wear for the event, which will be on March 27th, at the Saks 5th Avenue, here in Tampa. Hannah really enjoyed her day and we would like to Thank the Foundation for inviting her to be a part.

Through it all, we have tried to maintain a positive outlook, but always with the nagging reality in the background. I try to keep most of my entries strictly about Hannah and her health. There are so many frustrations that I do not share with you, because that is my burden. There are so many emotions that I do not share with you, because I do not have the eloquence to do so. But the daily fear that your most precious gift may be taken away, at any time� that really starts to wear on you. But it also makes you focus on the simple pleasures; a smile, a laugh, a hug. Time is precious, for all of us.

Again, I ask you to keep Hannah in your prayers. And also pray forPenelope and Michael as they continue their battle. Thank you all so much for you for all the support you have shown during this journey.

Tuesday, March 6, 2007 5:59 AM CST

Hannah's liver CT came back clear! Praises!!!
We just got the results on Monday that said the spots are not visible. I don't understand it and will consult further with the docs, but I'll take it. Plus, Hannah was able to do the CT without sedation! She was such a trooper. She had to lay still in the machine for about 20-25min. Mom & Dad were both in the room holding her hand and talking to her to pass the time. She did excellent. We'll be putting her to the test again this week for a sinus CT. Her runny nose and cough have come back and we're going to see her ENT doc who wants a sinus CT. This is a pretty quick scan and we expect her to do fine. She has started her 3rd cycle of accutane and we hope she continues to tolerate it well.

This past Sunday we went to the Children's Cancer Center's Spring Festival. They always do a great job for all the kids. Hannah had her face painted and even helped in the magic show!

Please continue to pray for Hannah and all the little warriors.

Tuesday, February 27, 2007 6:18 PM CST

Hannah continues to do well.
She had a good weekend at Daddy's. We didn't do a whole lot. Just playing around the house with her friend, Kayla. We did make some cupcakes. Hannah enjoys the icing and sprinkles part.

On Monday, she had physical therapy. On Tuesday, a follow-up with the cardiologist. Her echo results were "normal". Praises!!! Some of the measurements were on the low side of normal, but that's better than where they were. The cardiologist stopped the enalpril and wants another echo in 6 months. We also got the results of the dexa scan (bone density). She is one deviation below normal, which is at the starting end of osteopenia. I'm actually pleased with that result, I was expecting worse. I'll follow up with the docs as I don't understand all of the verbage in the report. She has physical therapy on Wednesday. Thursday is the CT scan. We are very hopefull that she'll be able to lie still for the scan without sedation. But we have anesthesia scheduled just in case.

She has had a little bit of a cough and runny nose. Something that goes around this time of year, but causes concern when your child has a compromised immune system. She seems to be handling it ok. Her energy is pretty good. She is playful and laughing most of the time.

Please continue to pray for Michael and Penelope. Both are experiencing pain from the disease. And pray that Hannah will be able to do the CT without sedation and that we get good results. Thank you all for your thoughts and prayers.

Tuesday, February 20, 2007 6:40 PM CST

Hannah has been doing very well.
She finished the 2nd round of accutane on Friday. She has really tolerated the accutane pretty well so far.
On Monday, we went and did a "practice" scan, putting Hannah into a CT machine without sedation. First we had to let her new stuffed kitty go into the hole, then Daddy. Then Hannah, she did great. We are really hoping to try and do future CT scans without sedation. We'll see how that goes for real on March 1. After the "practice" she went to physical therapy and did pretty well. As a reward for being so good, Daddy took her to the State Fair. She had been looking forward to all the crazy rides. We did get on a couple, but most of the ones she wanted to ride, she was too short. She had little interest in the "kiddie" rides. She's a thrill seeker. There was also a little circus and petting zoo, complete with zebras, kangaroos, and giraffes. She had a good time.

On Tuesday, I picked her up early from school and we headed down to All Children's Hospital for her echo, ekg, and bone density scan. Again, she did a great job of laying still for her echo. The bone density scan required her to lay completely still on a table as it scanned her. She did an excellent job. This scan should help determine the exact extent of the osteopenia in her bones. I think the "practice" scan helped with that too. We hope to get the results by the end of the week. Next week, she has an appointment with the cardiologist on Tuesday and the CT scan on Thursday, along with physical therapy on Monday and Wednesday.

Her energy and disposition have been very high. Her appetite is a bit more steady, but we'd always like to see more. She continues to enjoy school very much and is really coming along learning her letters and numbers. She is picking letters out of words and calling out shapes as we drive down the road. Overall, she's doing well and it's great to see.

Please pray for good results from all her tests. And remember to pray for Penelope and Michael and all the little warriors as they fight each day.

Wednesday, February 14, 2007 3:07 PM CST

Happy Valentine's Day to All!!!!

Hannah is doing pretty well.
She had a busy weekend with lots of visitors. GrandmaD & Pappy came down along with Uncle Lee and Uncle Jim. Jeff & Bonnie, cousins from NY, are down in FL for vacation and they came up to visit as well. We had a nice afternoon visiting and catching up. Hannah enjoyed showing everyone the pictures of her as a princess.

On Monday, I met with Dr. Wynn and a radiologist to compare some of Hannah's recent scans. The spots that were noted in her liver on the January scans versus the spots that were so much worry last year. We confirmed that the biggest spot was the same one that was biopsied last year. There are two smaller spots, including one in the left lobe, that were harder to identify. She will have a CT scan on March 1st of just her abdomen and pelvis. The radiologist suggested smaller "slices" be taken (basically more pictures of the area in question). Depending on what that CT shows, we will consider at that time. If the spots remain the same, we will closely monitor. If they are substantially bigger or more of them, we may have to do something more.
She finishes accutane at the end of this week. She finished the zythromax on yesterday. Her cough is pretty much gone, except when she tries to use it as a ploy. Her energy has been pretty good. The appetite, well...it comes and goes. Probably due to both the accutane and they zythromax.

She was very excited about Valentine's Day at school. We went out for dinner last night for our Valentine's. There was a clown at the restaurant who painted faces and made balloons. Hannah wanted to be a kitty cat. Thus the picture at the top. She was soooo cute. (Of course, I think that all the time anyway).

Please continue to pray for Hannah, and Penelope, and Michael and ALL the little warriors.

Tuesday, February 6, 2007 8:22 AM CST

Hannah is improved from last week.
The antibiotics seemed to help with the cough. It's not entirely gone, but much reduced. She's had no fevers. There were a couple of days last week when she wasn't nearly 100 percent with her energy level, but she seems to be improved with that as well. Because of her low energy and a doctor's visit, she missed some school last week and she didn't get to physical therapy last week, but did go yesterday. She had an appointment with the endocrinologist last week. We got some good news, she had grown a 1/4" since her last visit. I know it doesn't sound like much, but the fact the she is indeed getting taller is encouraging. She is about the size of a normal 3yr old, she is 4 1/2. But her blood work showed that the indicators for her growth hormone are now in a normal range. That is also good news because it means she does not need to start on growth hormone shots at this time. She started back on accutane this past Saturday. She reluctantly takes the pills. We hope that she tolerates this round as well as she did the last time. But from our past experience, each round gets a little tougher on her.

She did have some fun over the weekend. We went to a birthday party for one of her friends, Steven, who turned 4. It was at a place that had huge "bouncey" houses and slides and obstacle courses. She had a great time. Even dad had to go through the obstacle course and down the slides. It was actually great physical excercise for her and she had great energy. Thanks to Miss Gina for inviting us.

I ask that you pray for Penelope and her family. Her disease has progressed despite trying some newer treatments. I know the family would appreciate your prayers and any words of encouragement. I also ask that you pray for Michael Haley. He is a little boy in California who relapsed a few months ago. He has been going through some treatment that should some promise. However, this past week, his scans showed some spots that had grown as well as a new spot. He does not have a website, but he has a loving mom & dad and a big brother. They all need your prayers as they deal with this news.

It truly reminds me to be ever so thankful that Hannah is stable. Yes, she has some issues which are still very serious. And she is not "out of the woods" by any means. But in comparison, she is doing well. My heart breaks as I talk with these other parents. I cannot imagine what they are going through, as they watch their child in pain. And we have gone through some rough times as well. Sometimes I even feel a little guilty, that Hannah is doing well and their child is not. But then I just feel anger towards this beast, that any of these precious children have to endure what they do. And then I feel hope, that more research will help provide better treatments for long term survivals and that some children are continuing to fight, like Miss Emilywho has returned from NY with clean scans. And then, sometimes, I don't know what to feel.

We sincerely thank all of you who pray and write and consider us in your thoughts. It does mean more than you will ever know. Please continue your prayers for Hannah and for Penelope and Michael and the many other little warriors as they fight the beast.

Monday, January 29, 2007 4:35 PM CST

Hannah had a good weekend.
A couple of her friends, Trevor and Kaylee, came down for a visit and her first "sleepover". We had pizza on Saturday night and watched "Cars". She says Mater needs a bath. On Sunday, we went bowling. We had fun playing games and coloring at the house.

Hannah's cough has persisted. There was a couple hours on Saturday when she didn't feel to good and had a low grade temp. She seemed better on Sunday. But we decided to take her to the doc and get checked out since the Sudafed didn't seem to resolve the cough. The doc said he heard a "crackle" in her lungs and gave a scrip for some antibiotics and some more breathing treatments. Hopefully, this will get it out for good. So, we'll keep her out of school on Tuesday and see if she improves. She has an appointment with the endocrinologist on Wednesday, about the osteopenia. Since the accutane affects how calcium is absorbed, we'll have him check to make sure the hormonal levels are ok.

Please pray that the antibiotics will help get rid of the cough and keep it from developing into something else. Thank you for your continued prayers for Hannah.

Wednesday, January 24, 2007 5:13 PM CST

Hannah is doing fine.
She has had a bit of a nagging cough, for about the last month. She hasn't had any fevers though. So, we went to the clinic today to get her checked out. The docs think she has a little touch of a cold. So, we'll try some Sudafed, hopefully that will clear her up. Her blood counts looked good too. She continues with her physical therapy, twice a week. Her therapist says she really sees improvement in her overall strength. She's done with her first cycle of accutane. I have to say, she really had minor effects, some really dry lips and dry skin on her face. But otherwise, her tempermant was good. We expected some mood swings, who knows...maybe next round. She will get 2 weeks off and then we'll start another round.

Overall, she has had good energy. Her appetite has been ok. She weighs 34lbs! Her hair is now long enough to be braided, which she is thrilled about. She enjoys school.

Thank you for your continued prayers.

Sunday, January 14, 2007 7:02 PM CST

Hannah continues to do well.
She is about a week into the accutane and seems to be tolerating it very well. Except for taking them. She was glad to be done with the temodar pills and is none too excited to be taking pills again. And she has to take them in the morning and evening. It's been challenging.
Her eating seemed to be a little bit improved over the weekend. She ate an entire bowl of grits for breakfast and then some Chic-fil-A for lunch. Sometimes it's hit or miss.

GrandmaD and Pappy made a surprise visit with us this weekend. On Saturday, we went to Great Explorations, a hands-on place for kids. Hannah really enjoys this place. And they added some new activities since we were last there. Including a play animal doctor office, complete with IV pump and scale. The picture is GrandmaD and Hannah on one of the activities.

The PET/CT results were clean. Except that the spots that caused us such angst last summer, that were not seen on the follow up scans, were back. They appear to be in the same location and are the same size. So, we will monitor them on the next round of scans. It's possible the contrast didn't show them on the last round. Her spinal fluid was clean also. She is continuing with physical therapy twice a week and has shown great improvement with her mobility.

Thank you for your continued prayers.

Monday, January 8, 2007 6:48 AM CST

Hannah had her scans last Thursday and Friday.
We got the results of her brain/spine MRI and they were CLEAR!!! Praises!!! We are still waiting on the results of the PET/CT and Ommaya tap. She started accutane this past Saturday. There was a little issue with the presecription that took a few days to get worked out. So she started a little later than we planned. But she will take 3 pills of accutane a day for two weeks, then be off for two weeks, and we'll do this for 6 cycles. The accutane has it's own set of effects to deal with. We pray they will be minimal.

She has been doing pretty well. Her eating has dipped down again. But her energy seems good.

Thank you for your continued prayers.

Tuesday, January 2, 2007 8:14 AM CST

Happy New Year 2007!!!
We wish all of you the best for the upcoming year. This is a time to reflect and look forward. In January of 2006, Hannah was in NY for her first round of 3F8 treatment. That round went pretty well. In May we had a big scare with "unkown" spots in her liver. Thankfully they resolved themselves and were benign. In June, we lost the Amazing Jacob. In July, it was back to NY for more 3F8's. At the end of the round, she had an "episode" which put her in the hospital for a few days. She spend her 4th birthday in NY getting treatment. In August, she started at her new school. In October, it was back to NY for another round of 3F8's. She had another "episode" which was a bit more serious because we found some heart issues, which have improved. So, 2006 was a full year with some pretty big ups & downs. But Thankfully, Hannah is still NED and doing pretty well. We look forward to 2007 as a year that will let her enjoy being a little girl and that her body will remain free of the beast.

Hannah had physical therapy on Monday and will go again on Wednesday. The therapy has really seemed to help with her movements. They are focusing on trying to build her strength and they do a great job making it fun. On Thursday and Friday she will have a full set of scans. This is always a difficult time, waiting for the results. Please pray the scans are clean across the board. On Monday, she started taking accutane. This will be 6 cycles of two weeks on then two weeks off. We are not looking forward to it because; first, it is in pill form and twice a day, second, it really drys out her skin which then cracks open, third, it causes pretty severe mood swings and some insomnia. So, we'll prepare for the worst and hope for the best.

Please continue to pray for Hannah, for clean scans and mild accutane effects. And also for all the other NB warriors.

Wednesday, December 27, 2006 4:55 PM CST

Hannah had a great Christmas!
On Thursday, we headed to GrandmaD's house for a visit. On Friday, we went to the butterfly exhibit at the museum in Gainesville. It is a very large "rainforest" with hundreds, if not thousands, of butterflys just flying around. She was a bit disappointed that a butterfly didn't land on her. But she enjoyed it. On Saturday, we went to visit her friends, Savannah and Garret. They had a great time playing with some new toys. When we got home, she decorated some cookies for Santa. Sunday morning was our Christmas. Of course, she had a blast opening many presents. It was a joy to see her so happy. We returned home Sunday evening. She is now on a Disney cruise with her mom and their family. I'm sure she will enjoy seeing all the Disney characters.

On the medical front, all is quiet. She will start on the accutane on the first of the year. She will also have a full set of scans the first week of January. Her eating has been up and down a bit, but she is maintaining her weight (might even be gaining a little). Her recent likes have been hot dogs with cranberry sauce and relish.

We truly hope that all of you had an enjoyable Christmas as well.

Wednesday, December 20, 2006 9:23 PM CST

Hannah is ready, I mean really ready, for Christmas.
She is full of the holiday spirit. She is out of school and at Daddy's house. We're singing Christmas songs, watching Christmas shows, and of course, many discussions regarding Santa. We are in countdown mode. Tomorrow we will head to GrandmaD's house to visit and wait for Christmas Eve to open presents. Then she will be going on a Disney cruise with her mother and their family.

On Monday, she had a busy afternoon. Clinic visit for blood counts, phsical therapy, and then a skelatal survey (x-rays of her whole body). Her counts were good. The therapy is really helping improve her body strength. The results from the skelatal survey were clean. They did note some "general osteopenia", which is reduced bone density. We are hoping to have a specific bone density scan in January with her other scans. Her appetite has improved, with the help of megace. Her energy has been really good. Last Friday, she finished the last dose of temodar. (She is very excited about not having to take the pills everyday). In a couple of weeks, she will start her first round of accutane. More on that later. Overall, she is doing really well.

I mentioned in my last entry how blessed and thankful we are to have Hannah with us for the holidays. But it does bring to mind all the other kids who gained their Angel wings this year and that this will be the first Christmas their family will have to endure without them. As joyous as the holidays can be, they can also be quite difficult. Please remember to pray for peace for these families.

We thank all of you who have sent cards and gifts. And we wish you a very Merry Christmas. Enjoy the time together with family, cherish each moment.

Thank you for your continued prayers for Hannah.

Monday, December 11, 2006 7:55 AM CST

Hannah continues to do well.
She is going to school everyday and enjoying it. She goes to physical therapy on Monday and Wednesday and has a clinic visit on Monday for blood counts, which have been good. She is still on temodar, but will be finishing it on Dec 15. After that, she will get a break for a couple of weeks before starting accutane. She is scheduled for a full set of scans after New Years. Her appetite is so-so, sometimes it's pretty good and other times not so good. But she is maintaining her weight.

Of course, she is all about Christmas right now...presents, Santa, Rudolph, lights. She has a joy that is contagious. I truly feel that we have the greatest gift possible...we are able to have Hannah with us to celebrate the holidays. There were times when, I have to admit, I didn't know if we would. God has truly blessed us. I think of so many other children that are in worse condition while they battle this beast. Please pray for them as well.

Thank you for checking in on Hannah and continuing to lift her up in prayer.

Sunday, December 3, 2006 9:29 PM CST

Hannah had a good weekend at Dad's.
Friday evening we went to a small Christmas party at a friend's house where Dad played Santa. Hannah knew it was me right away. But the other kids enjoyed it. Saturday, we went to a birthday party for one of her classmates. It was quite a party with a bouncy house and pony rides. That evening we went to Badge Bowl. This was our 3rd year that we've gone. It's a benefit football game between the Tampa Police & Fire department. They raise money for the Children's Cancer Center and use half the money raised to benefit a family in need. It's quite an event complete with fire trucks and helicopters. Hannah liked riding in the fire truck and waving to the crowd. She also liked getting her face painted and eating a hot dog and the "dunk tank". Sunday was a "chill" day at the house.

On Monday, she will go for physical therapy and a clinic visit for blood counts. Her blood counts have been pretty good lately. We also got results from the endocrinologist last week, her hormone levels are in the normal range. We will follow up in February, but hope that means she won't have to go on any type of growth hormone treatment. Otherwise, things are pretty quiet on the medical front besides still taking the temodar. That ends on Dec 15th. Then she will have 2 weeks of before starting her first cycle of accutane (more pills).

She is definetely in the full swing of Christmas and Santa Claus. We've got the house decorated, but anytime we go by a house with lots of lights or those animated reindeer, Santas, penguins, snowmen, she will say, "We should get those for our house". Dad's just not ready for that.

Thank you all for your continued prayers for Hannah.

Monday, November 27, 2006 10:23 AM CST

Hannah had a good Thanksgiving Day.
We hope all of you enjoyed time with family.
We headed up to GrandmaD's house Thursday morning. We had a very big turkey dinner. Hannah did not eat any turkey. She had her usual noodle dinner. However, she did discover cranberry sauce and seemed to like it quite a bit. We spent the rest of the day playing with Baby & Trouble, GrandmaD's dogs. We played outside because it was a beautiful day. We also had a birthday party for her cousin Harriet, who turned 21. Hannah loves parties and presents, even if they're not for her. On Saturday, we watched the Gators play football, and win. Then we headed over to a friend's house, Savannah and Garret. They have a horse, and the kids feed him a whole bag of carrots. Then they played outside on the swings. And then we headed home to Tampa. On Sunday morning, we put up the Christmas tree at Daddy's house. We danced to Christmas songs as we hung our decorations on the tree. She really enjoyed it. Then it was back to mommy's house.

Hannah has been doing really well. Her appetite is at times a bit spotty, but much better than the recent past. Her spirits and energy have been very good. She is happy and laughing and acting pretty silly. Just like a 4yr old should.

We are so, so very thankful that she is doing so well. I think back over the past year, and she has gone through so much. It's truly a blessing and a miracle that we will enjoy another holdiay season with her smile. We know that God's Hand is on her. We thank all of you who pray for her every day and we ask that you continue to do so.

There is another little girl who needs you're prayers, Penelope London. She relapsed a couple of months ago, the doctors did not have much hope. But she is a strong and brave little girl who has continued to love life. Unfortunately, it looks as though her disease is progressing. She just did more hi-dose chemo and is undergoing a second stem cell transplant. I know her family would appreciate your prayers.

Monday, November 20, 2006 8:36 PM CST

Hannah has been doing pretty well.
She was able to go to school for the remainder of last week, after being discharged from the hospital on Tuesday. She has been eating pretty good and has had good energy too.

Today, she had a dentist appointment first thing in the morning. Then she went to the clinic for a finger stick for blood counts. Then to St. Pete for the echo and cardiologist appointment. We got great news from the cardiologist. Hannah's heart function was improved since her last echo a month ago. The actual squeezing of the heart muscle was better. So, he said we could stop the digoxin and we'll continue the enalapril and do another follow-up in three months. We were very encouraged by the improvement.

Hannah is out of school this week, for Thanksgiving holiday. We'll be heading up to GrandmaD's house on Thursday for Turkey Day festivities.

We are most Thankful that God has blessed us with Hannah and that He continues to keep His healing Hand on her. We hope all of you a Happy Thanksgiving, with time to enjoy friends and family.

Sunday, November 12, 2006 10:48 PM CST

Hannah has done well since being discharged last Tuesday.
She went to the clinic and her blood counts were good. She had a physical therapy visit. That seems to be helping. Her appetite is starting to come back. She is still on the temodar and cardiac meds. We have a follow-up appointment with the cardiologist on Nov 20.

She did go back to school and did pretty well. So, all in all, things are getting back to "normal" She went to a birthday party over the weekend for one of the kids from her class. They had a pot-bellied pig and fed him some apples. Hannah seemed to like that.

I'm out in California on business, so it's been a bit difficult keeping in touch with the time difference. Today I had breakfast with another NB cancer Dad named Larry. His son, Michael, has NB and has relapsed and they just started treatment using MIBG and chemo. Please add Michael to you prayers.

Thank you for your continued prayers.

Tuesday, November 7, 2006 7:50 PM CST

Hannah was discharged from the hospital today.
She had a pretty good day on Monday. She hasn't had any fever since Sunday. There was some confusion due to inaccurate lab results today. First, they said her chemistry levels were totally out of whack. So we asked them to re-test, then they said her red blood was low and she needed a transfusion. Well, her red blood was fine on Sunday. So we asked that they get blood from a finger stick instead of her line. The results from that were fine. But it meant that she had to spend most of today in the hospital instead of getting out this morning.

But she is doing pretty well and we are grateful this was a "false alarm". We will take her in to the clinic later in the week to re-check her blood counts.

She will go to school on Wednesday. We think she's ok to go and think it would be good for her. So we'll see how it goes.

Thank you for your continued prayers.

Monday, November 6, 2006 2:05 PM CST

Hannah had a good weekend, half of it anyway.
GrandmaD and her friend, Dorothy, came to visit. On Saturday, we went to an arts festival at a nature preserve. Hannah got her face painted and made some crafts; a crown, and a birdfeeder. We got to see a bald eagle and a couple of owls too. Saturday night, she had some vomitting, I thought due to the meds. On Sunday, we went to a friend's 1st Birthday party. But shortly after arriving, Hannah said she was tired and wanted to sleep. Hannah not wanting to be at a birthday party is not good. So, we left before the party really got started. She had a low grade temp which got worse after a couple of hours, 102.5. She did not look good and she said she was "achey". She really had not eaten anything all day either. So, we loaded up and went to the hospital. Her temp had gone down by the time we got there, but she was still admitted. They drew cultures and started IV antibiotics, the usual routine. The did a chest xray, which was clean. Today, she will have an echo to check her heart and her physical therapy. She has not had another temp and as long as the cultures come back clear and no more temps, she should be able to go home tomorrow. Her energy and spirits were much improved this morning and she had an appetite as well. Her white blood cell count was pretty high. So maybe she has a little something and her immune system kicked in, which is good. But it's hard to tell for sure. Hannah doesn't run a temp unless something's going on. I fell like I may have jumped the gun a bit, but with this deal, you can't be too careful. We're thankful that it doesn't appear to be anything serious.

Depending on how the week goes, she may be able to go back to school on Wednesday or Thursday. We'll just have to see how it goes.

Thank you for your continued prayers.

Wednesday, November 1, 2006 4:26 PM CST

Hannah had lots of fun on Halloween!
She was "Bat Girl" and her friend, Eli, was a race car driver. We got started right about dusk. The neighborhood had many houses that were really decorated well. Some had skeletons in the yard, some had bats, some had spiders. Hannah would shriek at about every house. She did pretty well with all the walking. She needed help with some of the stairs and by the end she was tired and wanted to be carried. Needless to say, she got lots of candy. Seeing her smile and how excited she got, really was worth it.

If you recall, last year at this time, we had just returned from NY from the Ommaya placement and first round of 8H9 antibodies. We really didn't know if we would get another Halloween with Hannah. So, it really makes every holiday special. Really, it makes every day special.

Today she had her first real physical therapy treatment. It went well. The therapist shared the results from the evaluation done on Monday. Hannah is a bit behind for her age in a few categories; movements and strength. For the next couple of weeks, she will go to PT twice a week, then once a week. We really feel this will help strengthen her legs and overall body mechanics.

Hope all of you had a fun Halloween. And I guess this means the holiday season is upon us.

Monday, October 30, 2006 8:40 PM CST

Hannah continues to improve.
She has been enjoying school and getting ready for Halloween.
Her appetite is starting to come back, with the help of magase. Her heart rate and pressures have been steady, still a little on the high side. So she is still on both of her heart meds, digoxin and enalipril.

On Monday, we had a physical therapy appointment. It was mostly an evaluation. She is still "stiff" with her leg movements. She will start having weekly visits to help loosen up her legs. We're still not exactly sure the cause, but hope the therapy will help. Then she had a clinic visit. Dr. Rossbach looked her over. Then she had to have an arm stick to draw blood. These are hard to do, she really doesn't like them at all. But we got the blood for her counts as well as for some additional tests the endocrinologist wanted. They will look at her growth hormone levels and thyroid levels.

After all that, we had an enjoyable afternoon playing with our neighbor, Kayla. They have a new little puppy, Maggie. Hannah loves dogs and Maggie is a cutie.
Of course, Tuesday is Halloween. Hannah is going to be "Bat Girl" and go trick or treating with her buddy, Eli. I will do my best to get some pics to post.
Please continue your prayers for Hannah and all the warriors.

Monday, October 23, 2006 3:47 PM CDT

Hannah is improving each day.
She did ok in school last week. A little on the low side as far as energy. But I think she enjoyed being back in school. Her eating hasn't been too good, but seems to slowly be improving. Her leg movements are still concerning. Sometimes she does seem to be in pain, but she won't admit it. Usually it's more of a problem later in the day. We finally have a physical therapy appointment, Oct. 30th. This week she has a dermatologist appointment. She has some small white spots all over her body. Not sure what they are, so we'll get those checked out. Her heart rate and blood pressure seem to be doing ok with the meds. They are still a little elevated, but in the ok range.

GrandmaD and Pappy and Uncle David and Aunt Debbie and Cousin Jo came down to visit. On Saturday, we went to a church carnival. Hannah loves the rides. That evening, we headed down to the beach to feed the seagulls and play in the sand and watch the sunset. It was a full day and Hannah had fun. On Sunday, we baked some cookies and watched football. The Bucs actually won! Overall, it was a very enjoyable weekend.

Thank you for your continued prayers for Hannah.

Tuesday, October 17, 2006 7:22 AM CDT

Hannah went to school on Monday.
Her teacher said she did really well. We were concerned if she would have the energy, but she did. And I think it will help her get back into a routine. She really does enjoy going to school.

Her heart rate and pressure are still a little elevated, but in an ok range. She will have a clinic visit today at St. Joe's, just for blood counts. I'm sure the nurses there will be glad to see her. Her spirit is improving a little each day. Her movements are improving as well, but she is far from normal in that regard. We are still waiting for the physical therapy appointment.

Thank you for your continued prayers.

Friday, October 13, 2006 1:59 PM CDT

Hannah is HOME!
She and mom arrived back in Tampa about 4:30p on Thursday.
We met with the cardiologist this morning. He reveiwed her previous echos and EKGs. He also explained why certain chemos cause heart damage and that sometimes the damage isn't seem for quite awhile. We are going to keep her on her heart meds for a month and then do another echo and evaluate. Her heart condition is something that will need to be monitored over time. We still are hopeful that it will resolve.Her heart rate is still high, in the 130s. Her pressure is looking a little better.

Her energy is a little low. We are hoping that being home will help lift the spirits. Right now, she is just so over being poked and prodded. Who can blame her? After the doctor visit, we went to see a movie, Open Season. She seemed to enjoy it, but was very quiet throughout.

We are thankful to have her back home. We will focus on getting her back to a good place. If she is up to it, we hope to let her go to school on Monday. It might help her feel a little grounded again. We'll have to see.

Other than that, we are still waiting for a physical therapy appointment. Her leg movements have somewhat regressed. It may be soreness from another set of bone marrows, not really sure. She'll have a clinic visit next week, just to check blood counts and let her regular doctors get a look at her.

Thank you all for your continued prayers for Hannah.

Thursday, October 12, 2006 7:59 AM CDT

Hannah is coming home today.
She had an EKG and an echo yesterday. The echo showed unchanged function from Monday's test. The EKG looked OK. Her heart rate has come down a little, but is still high. We will meet with a cardiologist here at home on Friday morning.

Just to add to the trip, the building in NYC that was hit by the plane yesterday is literally, 2 blocks from the Ronald McDonald house. Both mom and Hannah are fine, just wanting to get home.

Thank you for your continued prayers.

Tuesday, October 10, 2006 7:47 AM CDT

Hannah is out of the hospital, but still in NY.
She spent the weekend in the hospital and was discharged late Monday afternoon. She had another echocardiogram on Monday that showed improved function, in the lower range of normal. Her heart rate is still in the 150-160 range, even on the med. Her blood pressure is slightly elevated as well. But with the improved function, they let her out. She will stay in NY with mom at Ronald and go in for a follow up echo and EKG on Wednesday. If they are good, she can come home so we can follow up with a cardiologist here.

It was a frustrating weekend as their was alot of confusion as to whether the Sloan cardiologist (who had been out of town) or even the echo tech would be in on Monday, since it was a "holiday". We were unable to communicate directly with the cardiologist across the street at NY Presbyterian who was "overseeing" her case. We talked about having to take her across the street to have the echo done, since that's where the cardiologists were. As it worked out, we had the echo done at Sloan on Monday morning and finally, a Presbyterian cardiologist came over Monday afternoon to consult with us (Sloan's cardiologist did not come in).

We are still unsure what exactly caused her heart issues. We feel strongly that the 3F8 treatment caused the increased rate and pressure, just like the last cycle. I can't say the decreased function was a "quirk", since it is still lower than her baseline. But we are very encouraged that the function seems to be improving. Hopefully that shows that all this will be a temporary condition. We just want to get her home so we can monitor and manage it here.

Regardless, she was very excited to get out of the hospital. While we were talking with the cardiologist, anytime the word "home" was mentioned, her eyes would light up and she would say, "I'm going home, I'm gonna be free". I have said this before, but I'll say it again...she is truly amazing. She accepts being connected to all the wires and tubes (that doesn't mean she likes it). She tolerates all the poking and prodding and taking 5 meds at a time (again, doesn't mean she likes it). But she is such a trooper. She is proud when she takes off her "stickers" (the electrode patches) by herself. We tell her to be still when they take her blood pressure so we can get "good numbers". So, she watches the montior with all her little waveforms and says us, "Those are good numbers, right?" It's inspiring and heartbreaking at the same time.

I returned home late last night. And, unfortunately, did not get to speak to any of the NB docs while I was there (which I'm not so happy about). I think it's safe to say, I don't see anymore 3F8s in her future. I have a feeling they will want us to do more, but she's done. We tried them, they put her in the hospital, twice, with some serious complications that take some serious time to recover. So, we will have to decide what our options are for future treatment.

Please continue to pray for Hannah: that the echo on Wednesday is normal, that her heart rate comes down, that she can come home soon. I know, beyond a shadow of a doubt, that all the prayers for Hannah that are lifted up by you, are heard by our Great Healer. That's what makes all of you, "Hannah's Helpers". And we Thank You for all the prayers.

Friday, October 6, 2006 4:49 PM CDT

Hannah has developed some complications in NY.
During the treatment on Wednesday, her oxygen saturation levels got quite low and she "passed out" for a few seconds. They revived her quickly. But afterward, she could not hold her sats without oxygen. Her heart rate was also quite high. So, they admitted her to the observation unit. On Thursday they did an echocardiogram, (ultrasound of the heart). Later in the day, we got word that the echo showed decreased heart function (compared to her last echo in July). It explains some of her symptoms. The exact cause is unknown. The general thinking is that her heart has been damaged by all the treatment, especially chemo, and that the stress of the 3F8 treatment "aggrevated" her heart. We probably will never know for sure exactly what happened. But now we have a very serious condition to treat. She has been started on a med to lower her heart and hopefully improve function. Her sats have been holding higher and her heart rate has come down a bit. She has to be monitored very closely while they adjust the dosage of the med, too much and the heart rate drops too low. So, she will probably remain in the observation unit till at least Monday. Adding to this is the fact that Sloan only has one cardiologist and she is out of town till Monday. Her echo was read by docs from across the street at Presbyterian. So we will have a consult with the Sloan cardiologist on Monday. We also will meet with the NB team docs to discuss future treatment options.

It definetely appears that Hannah and 3F8s just don't like each other. We have to balance the possible long term benefits of the 3F8 treatments against the short term impact on Hannah. I would have to say that it looks doubtful that we will do another round of 3F8s. Alot of cancer kids develop other issues because of the harsh nature of cancer treatment. We have been very blessed that, for the most part, Hannah has escaped most of those problems, for now. We hope that this heart condition is temporary and that with proper care and management and time, it will resolve itself. But there is a chance that it won't. We just won't know right away.

I will be heading up to NY tomorrow to join Hannah and her mom. If she continues to be stable, we hope she'll be able to come home early next week. Hannah is obviously not happy being in the hospital, especially with all the wires attached for monitoring her heart.

Please pray for Hannah: that her heart will return to normal, that the damage is not permanent.

Wednesday, October 4, 2006 8:34 AM CDT

Hannah has finished 2 days of 3F8s.
Monday was a very long day. She was at the clinic at 8:30a, but didn't start the treatment till almost 2p. She had to be accessed, they had to get the right pain med from the pharmacy, things like that added alot of delay time. She handled the first day like a champ. No blood pressure or heart rate issues. The dilaudid seemed to do a great job managing the pain. After leaving the clinic, she was pretty groggy but for the most part ok. During the evening though, she did have pretty bad nausea, although she didn't actually get sick. She also had some problems going potty. Tuesday was another long day. Getting started a little earlier, but her heart rate was way up after the treatment, about 190. So they kept an eye on her for awhile. Her heart rate came down into the 160's and they let her go. She also had some pretty bad hives that lasted a couple of hours. She hasn't had those before but they are a known side effect of 3F8s. Overall, I would say things are going ok. You just never know what to expect and what the day will bring.

We did get the results from the PET and spinal fluid, both are clean. PRAISES!!! Still waiting for the bone marrows.

Please continue to pray for Hannah and for all the other warriors.

Monday, October 2, 2006 8:27 AM CDT

Hannah is in NY.
She arrived Thursday evening with her mom and grandma.
On Friday, she had her PET scan and bone marrows and Ommaya tap (for the spinal fluid). The PET was supposed to start at noon. However, she did not get started until 3:30p, which was hard because she couldn't eat or have any juice until after the scan. The scan went fine. She was very hungry afterwards. She did have some soreness over the weekend from the bone marrows, that is expected. But overall, she did pretty well. We hope to get the results from these tests early in the week.

This morning she will start the 3F8 treatment. As I mentioned before, she will be getting "double-dose" of the 3F8 and the treatment will be for 5 days. We really don't know what to expect with this change, but pray she will tolerate it ok. We will also try dilaudid for pain, instead of morphine. According to the docs, it should manage the pain better and has a shorter half-life afterward. We've used morphine because when we've used dilaudid in the past, Hannah was really aggressive and miserable afterward. But we thought it would be worth a try again. We'll see how it goes.

We got the results from the MRI done last week, her brain and spine are clear of disease. PRAISES!!! We pray the PET shows the same.

Please pray for Hannah and her mom, they are in for a tough week of treatment. For me, it's tough not being there. But we pray things will go as smooth as possible.

Monday, September 25, 2006 3:11 PM CDT

Hannah had a good weekend at Dad's.
We enjoyed meeting Pat and Alison Becker. Their son, Chris had neuroblastoma and passed earlier this year. They were kind enough to let us join them in their Alex's Lemonad Stand at Sawgrass Park. They belong to a walking club and had an event there. Everyone was so nice and enjoyed seeing Hannah. She colored the sign she's holding in the picture to put up in the stand. She also decorated some little boxes for the money. She helped pour the lemonade. She really enjoyed herself.

Tuesday, she will have a brain/spine MRI in the morning. Then a clinic visit for blood work and to put in the insuflon (no-owie port). She will start getting GM-CSF shots on Wednesday. This is part of the normal process before starting 3F8s. She will head to NY on Thursday with her mom. On Friday, she will have a PET, bone marrow aspiration and Ommaya tap, all at Sloan. We were glad we were able to work it out that way as it saves an extra day of sedation (if we had to have the PET done here).

Her spirits and energy have been good. She's been eating pretty well. She still likes shrimp and ranch dressing, but has been eating other things as well; noodles, bologna, etc. On Sunday, we made some Halloween cookies. She only ate one, but she likes the cooking and then decorating them. We had dinner at her friend Kayla's house. They love to play together. She even took a little swin in the pool.

Please continue to pray for Hannah; that the MRI is clean and with no complications, that she tolerates this round of 3F8s better than last time, that she & mom have safe travel to NY.

Also, Please pray for peace and comfort for Christi Thomas' family as they start life without her and for another family who lost their precious Erin to this beast.

Monday, September 18, 2006 2:44 PM CDT

Hannah continues to do well.
Her blood counts are good. Her energy is good. With the help of magase, her appetite is good. She will be finishing her temodar cycle next week. If you recall, she has been HAMA negative since returning from NY. But because of the blood pressure and leg issues, we decided to do a cycle of temodar and let her recover. Well, that time is done. Sloan would like her in NY for another round of 3F8s starting Oct 2. She has a brain/spine MRI scheduled for Tuesday, the 26th. We're working on the PET. These need to be done before going to NY. Needless to say, we are a bit apprehensive about doing another round. Considering all the complications she had during the last one. But we are going to try it and see how it goes. Each round, even each day in a round, are so unpredictable. Please pray with us that she tolerates this round much better.

On Sunday, we went to Sesame Street live with a couple of friends. Hannah really enjoyed the singing and dancing. All the gang was there; Elmo, Big Bird, Bert & Ernie, Oscar. It was good to see her laughing and clapping.

For those of you in the Tampa area, this Saturday, Sept. 23rd around 9am, we will be taking part in an Alex's Lemonade Stand at Sawgrass Park in St. Petersburg. The proceeds go to pediatric cancer research. It is being organized by the parents of Chris Becker, a boy who passed from NB earlier this year, and their walking club. Anyone who would like to come is welcome and we would enjoy seeing you there. Click HERE for more info. Click on the Sawgrass link on that website. Hope to see you there.

Please continue your prayers for Hannah and for Penelope and Christi and their families. Christi has been a warrior for so long and now she is nearing the end of her battle.

Sunday, September 10, 2006 9:41 PM CDT

Hannah had a good weekend.
GrandmaD and Pappy came to visit for the weekend. We baked some cookies and played Candyland and colored, lots of coloring. We also went to the zoo. Hannah like the pony ride. It was pretty hot, so we only stayed a couple of hours. We watched some football. She's pretty cute when she shouts, "Go white team, Go!". She picks the team she likes by their colors.

Her appetite is pretty good, thanks to the magase. She did vomit once over the weekend, but that was all. We continue on the temodar. Her legs movements are pretty good, I wouldn't say 100%, but pretty close. We wanted to get her seen by a physical therapist, unfortunately, there is a 8 week wait. Thankfully, she's continued to improve in that area. She will have a clinic visit this week for blood counts. Her numbers have been good, even on the temodar.

Thank you for your continued prayers for Hannah.
I would ask that you add two special warriors to your prayers, Penelope and Christi. Both girls have had disease progression. You can learn more about them on their websites.

Tuesday, September 5, 2006 9:14 AM CDT

Hannah had a good weekend with her mom.
Her appetite is coming back, with a little help from magase. Her movements seem to be almost normal, still a little slow at times. Her energy has been great.
She has a clinic visit for blood work and an appointment with an ENT doc today. We are hoping to find a resolution to the many sinus infections she seems to get. The antibiotic, for her latest sinus infection, will be finished this week. She is still on the temodar.

Thank you for your continued prayers for Hannah.

Wednesday, August 30, 2006 6:38 PM CDT

Hannah had a good weekend.
She really enjoyed the Princess Birthday party on Saturday for her friend Kaylee. It was at the Color Me Mine pottery/paint shop in Tampa. Hannah painted a little puppy, mostly blue with a little pink. She ate some chicken nuggets, with ranch dressing of course, but no cake. On Sunday, we went to the mall for some pictures. They had a double-decker carousel, which we rode twice. She liked the dolphin and the horse with a mermaid tail. Of course, we couldn't make it past the Disney Store with ALL the Princess dresses, right up front! She wanted a Princess art set, which she got. (Bribery for taking her med-meds like a big girl!)She deserves it.

She had a clinic visit yesterday for blood counts. She also went to a follow-up visit with the endocrinologist. It appears that she is a little low on a certain growth hormone, but not quite low enough to be treated. So, we will draw labs again in 6 months and see where we're at then. She continues taking the 3 pills of temodar and 3 pills of the antibiotic, daily. It's still not alot of fun, even though we try. It doesn't sell to easy to Hannah. But she's still a champ about it. Her nose seems to be clearing up, and no fevers. So, hopefully that's under control.

She continues to enjoy school. We have to get up pretty early, but I think we're starting to get the routine.

Thank you for your continued prayers for Hannah.

Friday, August 25, 2006 10:14 PM CDT

Hannah had her CT on Wednesday.
The results came back clear. Praises! But we still don't know what caused her leg pain. She is still not 100ith her movement. But her overall disposition and spirit are good. We think she has another sinus infection, so she started on some antibiotics to help clear it up. So that's another 3 pills a day she has to take (in addition to the 3 chemo pills). Her nose is just a little runny, but thankfully, no fever. Her appetite has slightly improved.

She continues to enjoy school. They finally were able to move in to their new classroom. Her teacher is very nice and watchful of her. She is still having problems sitting, so the teacher got a block for her to sit on. She is actually proud of her block.

We are planning a low key weekend at Dad's. We have a Princess birthday party on Saturday, which she has been looking forward to for quite awhile. We'll probably just hang close to the house for the rest of the weekend and enjoy some quality time.

Thank you for your continued prayers for Hannah and all the other warriors.

Tuesday, August 22, 2006 6:49 AM CDT

Hannah's movement has greatly improved.
However, there are still certain movements where she is still slow. She is not complaining of any pain. We are glad that she is slowly improving. She will have a pelvic CT on Wednesday to make sure we are not missing anything. Her blood test from last week came back normal. So, we're really not sure what's going on.

Hannah started back on temodar last week. She's actually done pretty well getting back into taking her "roll up med meds". It's still a little bit of a challenge. Her blood pressure and heart rate have been normal for about a week now. We got word from NY that she is HAMA negative, which was a bit unexpected. But with the leg thing, plus how rough the last 3F8 treatment was, we are waiting a bit before heading back for another round. We hope to complete a full cycle of temodar, 42 days, and then go from there.

Her energy and disposition are great. She's smiling and laughing and really back to herself in those regards. It's so good to see her feeling good. She's really enjoying school and learning about colors and numbers and new Jesus songs.

Please continue your prayers for Hannah: for a clean CT result, for her legs to continue to improve.

Tuesday, August 15, 2006 9:04 AM CDT

Hannah has continued to improve with her energy.
However, last Wednesday, she had problems standing up. She said her leg hurt. So, we took her for x-rays of her legs and pelvis. Those came back clear. On Thursday, she was much improved and moving around pretty good, but still having problems sitting and standing. We're not sure what's going on. Is this 3F8 related? Sloan says no. Is this disease or a bone infection? X-rays are clear. So, we are going to schedule a CT for her pelvis to see if there is something the x-rays missed. We are also going to have a visit with physical therapy. This is concerning, because there are questions as to why. But overall, she is much improved.

Her blood pressure and heart rate are now normal. She is not on any med for that. We are giving her a med to stimulate her appetite. That seems to be improving. Although, her latest kick is popcorn shrimp. It is about all she will eat, all the time. But at least she's eating.

GrandmaD and Pappy came down for a visit over the weekend. Hannah was glad to see them both. We all went to Chuck E Cheese with some new friends, Trevor and Kaylee. The kids all loved it. On Sunday, Hannah and Dad went to a birthday party for Davis, a little friend of Hannah's.

She is back at school and really seems to like it. She is soaking up the learning experience. Yesterday, she learned the pledge of allegance and was quite proud.

Please continue your prayers for Hannah; that these leg issues get cleared up.

Wednesday, August 9, 2006 8:28 AM CDT

Hannah's first two days of school have gone well.
She seems to be excited about learning her letters and making new friends. She's not doing so well eating her lunch (or in general for that matter). So we'll probably start back on the magase to help the appetite.

We checked her blood pressure after school on Monday and it was low. The docs suggested stopping the blood pressure med, which we did Monday night. On Tuesday afternoon, her blood pressure was 100/69 which is much lower than it has been. So we're hopeful that we're past the hypertension issues. Ironically, we expect to receive the monitor from home health today. On Thursday, we'll draw blood for the HAMA test and send it to Sloan for testing. We should get results the following Tuesday. That should be it for the week. We did get results from her kidney ultrasound, it was normal.

Thank you for your continued prayers.

Sunday, August 6, 2006 6:20 AM CDT

Hannah is improving.
On Thursday and Friday, her pressures were down. They are still slightly elevated but trending down, so we changed her med to every 12hrs. We still have been unable to obtain a pressure monitor but should be getting one this week. She had an ultrasound of her kidneys on Friday. We hope to have results on Monday. We did get results from her bone marrows and spinal fluid, both were clear! Praises! Her eating and disposition have continued to improve as well. She is still a little low on energy.

On Friday, we went to the Open House at her new school. She starts this Monday. They have a beautiful new building for the pre-school classes. Although, they do not have the certificate needed to use it. Hopefully, it will only be a week or two. It's a much bigger school than her last. But her class is still pretty small, only 8 other kids. It will take some adjustment, but we hope that the consistency of going every day will help her.

Today she has been more herself than I've seen in awhile. She's smiling and laughing. It's great to see. We made cupcakes, with pink frosting and sprinkles. We hung out at the house most of the day. We did go to Kayla's house for a little bit to play and eat a slushie.
Thank you for your continued prayers.

Thursday, August 3, 2006 1:58 AM CDT

Hannah had a clinic visit on Wednesday.
Her blood counts looked pretty good. Her platelets are coming back up, they were at 60. Her blood pressure was still elevated at 120/83. She is still on the med to help control the pressure. We were hoping to be able to monitor the pressure at home so we could see if it was trending down and adjust the med accordingly. Well, you wouldn't believe how much trouble it has been to find a pediatric blood pressure machine. We thought we were getting one on Wednesday, only to find out it that we couldn't get it till next Wednesday. We've made countless phone calls to pharmacies and home health companies with no success. We tried getting a "home" unit from the pharmacy, but it's not made for a child and it wouldn't take her pressure. So, we will take her into the clinic in the mornings to check her pressure and will have to continue with the med until we can find a machine. This just makes it more difficult to determine if the pressure is coming down on its own or if it's the med.

Her disposition has been slightly improving each day since she's been home. Monday and Tuesday were pretty rough but she seemed to be better on Wednesday. Hopefully, that trend will continue and we will start to see the true Hannah back soon. Her appetite and energy are still low.

Thank you for your continued prayers.

Tuesday, August 1, 2006 6:48 AM CDT

Hannah is HOME!
We got back to Tampa Sunday evening about 8p. She slept most of the flight home. The flight was a bit bumpy at first but then smoothed out.

She had a clinic visit on Monday, just so our docs here could take a look at her. She is still on the med to control the blood pressure. We have ordered a blood pressure monitor to use at home so we can check her pressures. She is scheduled for a kidney ultrasound on Friday, in case the pressure doesn't come down.

We cancelled the ENT doc appointment, because right now she doesn't have a sinus infection and Dr. Rossbach told us of a blood test we can do to check specific aspects of her immune system and that we can do a monthly infusion to help boost it. Hopefully, this will prevent future infections instead of just treating the symptoms. I'm not sure why it's taken this long to hear of this test, but I'm glad we have. We've also pushed back starting the Accutane for a week. She needs a bit of a break and Sloan agreed that would be OK.

Her spirits are coming up a little bit, we're seeing a couple of smiles now. She still is low on energy. Her appetite is coming back, just a little. I was a little surprised, but glad, that she weighed 30.5lbs on Monday because I thought she would have lost more weight since she really didn't eat for 2 weeks. So, we're hoping that taking it easy for the week will help her recover and gain some strength back.

On Monday, August 7th, she will start at her new school, Bayshore Christian. We were happy with the care at her last school, but thought it was time for a change. We hope that she will have more consistency and that will help her development.

Please continue your prayers for Hannah; that the blood pressures come down and that her strength is regained.
Thank you all for your support.

Sunday, July 30, 2006 11:58 AM CDT

We are heading home later today!!!
Hannah was discharged this morning and we left the hospital about 11am.

Hannah started to perk up a bit yesterday afternoon, right after we told her we might be going home soon. She actually ate a little bit of meatballs for dinner. Her oxygen levels were good through the nite. Her blood pressures are still higher than normal and she's on a med to help control it. But she's been needing the med less than before. We are hopeful that the pressures will continue to come down once we are home.

She will have some clinic visits this week as well as a consult with the ENT doc (sinus infections). She will start accutane tomorrow and stay on that until we get her next HAMA result. If she's HAMA positive, she'll go back to temodar. If she's HAMA negative...well, that's where it gets tricky. Technically she's supposed to have another round of 3F8 treatment. Needless to say, we have some reservations about that at the moment. I'm sure there will be many discussions about what's next.

Anyway, we just finished a quick trip to the pottery shop to make a necklace and now we're waiting for the car to take us to the airport. So, we got to run.

Thanks so much for all the cards and presents that she recieved. But most of all, Thank you for the prayers and support during this trying time. Please continue your prayers for lower pressures and heart rate.

Friday, July 28, 2006 7:27 PM CDT

The past couple of days have been very eventful, to say the least. I am writing from the POU (Pediatric Observation Unit) at Sloan, it's more than a normal room but not quite an ICU. Hannah was admitted late on Thursday after her 3F8 treatement due to a very scary "episode" during which her oxygen saturation level dropped into the mid 50s (97-100 is normal). Her treatment had gone pretty well, considering she still had elevated blood pressure and heart rate. The pain was moderate. The nurses were getting her last set of vital signs before we were to leave. We were trying to get the oxygen level (Sats) and the numbers were low, we thought there was a problem with the machine. In a matter of seconds, Hannah turned blueish/purple, eyes rolled back and she went stiff, as I was holding her. Of course there was an immediate reaction from all of us. She came back in 5-10 seconds. As we were all trying to figure out what just happened, her sats dropped again. Lots of doctors later, we were admitted for observation.
From last night and through most of today they have run alot of tests trying to determine what caused this "episode"; 2 chest x-rays, head CT, head MRI, echocardiogram, EEG. All have come back normal. They also did the bone marrow aspiration and ommaya tap, but no results yet. She has not had another "episode", thank God. However, her blood pressure and heart rate are still elevated and we're not exactly sure why. It's possible they are side effects from the 3F8 treatment itself, if so, then we hope they will be coming down soon. She did NOT have 3F8 treatment today. She is stable now and we're just waiting to see if her blood pressures come down.

There are lots more details, but I'm too exhausted to write too much right now. I just wanted everyone to know what was going on so that ALL the prayer warriors could pray for good sats and lower pressures. Hannah really is very "over" all this poking and prodding. She really wants to go home, and believe me, I want to take her there. But we can't risk it by rushing if she's not ready.

So, we probably won't be coming home until Sunday, IF her pressures come down. If they don't, then we'll probably be up here a few more days.

Thanks so much for all the cards and presents and wishes. We opened alot of the cards today while she was laying in bed. There were alot of very cute cards. We appreciate the thoughts and prayers from all of you.

Wednesday, July 26, 2006 8:18 PM CDT

Today was another long day at the clinic.
Hannah was a little bit cranky this morning. We did our morning med-meds and she perked up a little bit. Until she realized we were headed to the clinic. I'm sure now that she knows what going to the clinic means. We got there about 9:30a and her blood pressure and heart rate were already elevated. Dr. Kramer checked her out. Hannah perked up when she was showing Dr. Kramer pictures of her trip to Disney. Then it was a waiting game for a bed to open up. Her blood pressure had not come down, so we gave her a dose of lasix. It seemed to do the trick, she pee'd and her pressure came down a little. We finally got started on the 3F8 pre-meds about 1:30p. Her heart rate was around 160. We tried something new, per Cat's suggestion, dance therapy with a lady named Jocelyn. I think it really helped Hannah. It wasn't dance so much as music and mental distraction. We helped her imagine she was in a pool of water and asked what kind of animals she wanted in her pool, then we gave her a "magic" wand to use in her pool. Her heart rate stayed in the 160's the whole time through the infusion. The pain did come, but I think Hannah was less anxious about it. She "internalizes" the pain by curling up and kind of "grunts" through it. She's an amazing strong little girl. Her heart rate stayed about 180 for a couple hours after the treatment. Hannah was really focused on going to the pottery shop again and I had told her we would. I didn't want to disappoint her. So Cat let us go at 5p so we could make it before the shop closed. We stopped there on the way to the "House". She painted a pair of ballerina slippers. At one point, she fell asleep while holding the paint brush. But she was determined to paint those shoes! When we got to the room, we got her setup in her bed with her video on and she went to sleep in about 15min. She's still sleeping, I'm sure her body needs the rest.

Thank you all for the Birthday wishes in the guestbook, but also all the cards she's gotten. We opened a few at the clinic today, there were some really cute princess cards with stickers and such. She enjoyed them. We'll open some more tomorrow. It means so much to know that so many people are thinking and praying for her. Again, Thank You!

We will see what tomorrow brings for her. Friday is shaping up to be a really tough day for her. She will have bone marrow aspirates done in the morning. This requires her to be sedated. Sloan "digs" 4 spots in her pelvic bone for the bone marrows, 2 in front + 2 in back. They are usually very sensitive and hurt afterward. Plus they will do an ommaya tap to pull CSF for testing. Then the 3F8 treatment in the afternoon. When we're done with all that, we'll have to pack up and clean up to get ready to come home on Saturday morning.

Please continue your prayers for Hannah and for all the other little warriors.

Tuesday, July 25, 2006 10:24 PM CDT

Thank you all for the Birthday wishes!
The birthday started out pretty good. Hannah was all smiles this morning when she saw a couple of presents on the bed. She really wanted to go to the pottery shop again and I knew that wouldn't be possible after treatment. So, we stopped in on the way to the clinic. Of course, she wanted to paint another princess, which we did. Ms. Sharon is a lady at the shop, she is so good to Hannah, she gave the princess as a birthday present. Then it was off to the clinic. First, a finger stick. Her ANC had dropped down, so we had to give her a GM-CSF shot. Before any of the treatment started, her blood pressure was pretty high. We waited and she went pee, but it was still high. So, we had to give her some lasix and that did the trick. She pee'd again and the pressure came down. She did have some pain during the infusion, about half way through, that lasted a good 20min or so. She had one and a half rescue doses of morphine. Her heart rate went up to 200 (which is pretty high for her). After the pain passed, her heart rate stayed in the mid-170s. Even though she appeared to be comfortable and relaxed. So, we waited, and waited, and waited for the heart rate to drop. It didn't. It started to cause some concern among the nurses. They don't like to see the heart rate that high for that long. We even tried another small dose of morphine in case there was some residual pain. It didn't really help. But she was calm and coherent, so about 7:30 they let us go home. We were the last ones out of the clinic.

There were a couple of other bright spots to the day. The Child Life workers brought a couple of presents back to Hannah's bed area and sang Happy Birthday. That brought a smile to her face. And when we finally got back to the "House" and got into our room, there was a pile of presents on her bed. They actually had thrown a little party for her at the "House" which we totally missed, but certainly appreciated the thought.

Her evening ended around 9:30p when she finally fell asleep. This in contrast to yesterday when she slept pretty much the whole afternoon and evening. That's kind of the way it is with this 3F8 treatment. Every day is different. The effects are different, the child is different. It's just one big surprise waiting to unfold.

Tomorrow is another day. They asked to come in earlier since we've been shutting the clinic down in the afternoon. Maybe that will help her in the evening time. Maybe.

Thanks again for all the Birthday wishes and the prayers, especially the prayers.

Tuesday, July 25, 2006 5:08 AM CDT

HAPPY BIRTHDAY HANNAH!!!!
Today is Hannah's 4th Birthday!!!

Hannah had an OK weekend. She didn't have alot of energy, but she also didn't have any nausea or hives. Her potty issue has gotten a little bit better.

I got into NY on Sunday afternoon. We went down for some pizza, as by her request. She actually ate almost half a piece (remember, they are NY size pieces). Then, we went down to the pottery shop down the street from the "House". We painted a princess, what else?! She really enjoys doing that and I hope she feels up to doing it again this week.

Monday was a bit of a long day. We got to the clinic around 11a, got a finger stick for blood counts. Then we had to put on numbing cream on her port and arm and wait. Then we got her port accessed and the insuflon put in. Her port actually worked wonderfully for the blood draw, which is unusual (but I'm not complaining). Her blood counts came back with a very high ANC, so she didn't need any GM-CSF (boosts white count). However, her platelets have dropped down to 46, possibly due to the GM-CSF. We'll have to keep an eye on that and possibly get a transfusion before heading home. We finally got back to our bed about 2p and got settled in. She did have some intense pain that lasted about 15min and in discomfort another 20min or so. But she only needed 1 rescue dose of morphine. Her oxygen sats did drop for a minute or two, but came back up with some oxygen. After all that, she went to sleep. We let her sleep till about 5p and then headed to the "House". She slept most of the evening. I think her body has taken a pretty good beating during this treatment and it needs the rest.

I'm glad we've had all the birthday parties because I'm not sure how much we'll get to do today. I hope we have some time this morning to enjoy. I did bring a couple of presents so she could unwrap them and "feel" like it's a birthday. Spending the rest of the day in the hospital won't be fun. For those of you who may remember, today, her birthday, actually marks 1 year that we've been coming to Sloan. Last year, on her birthday, was our first day at Sloan. And here we are again, on her birthday. It just doesn't seem fair for any little one to have to spend it in a hospital, but many do. I'll do what I can to make the day as happy as possible.

Please continue to pray for Hannah and all the other NB warriors.

Saturday, July 22, 2006 7:41 AM CDT

Hannah is getting a break for the weekend.
The 3F8 treatments went a little bit better on Thursday and Friday. Although her blood pressure still got alarmingly high. In part due to the fluid buildup from the pee-pee issues. On Friday, she needed to have another dose of Lasix which helped her pee and then her blood pressure came down. Her pain was decreased a little, needing only 1.5 rescue doses of morphine. As much as we want to manage the pain and keep her comfortable, the morphine itself causes other problems. So, it's a balancing act. She is still on the antibiotic (1 pill, 2x/day) for the sinus infection and magase for the appetite.

We hope the weekend will give her some time to recover and maybe do something fun. Hannah, (and mom too), have had a tough week. I will be heading up to NY Sunday afternoon. It's so very hard not to be there with her.

Only 3 days to Hannah's 4th Birthday!!
You can send a card to:
Ronald McDonald House
Attn: Hannah Douglas RM# 610
405 East 73rd ST.
New York, NY 10021

Please continue to pray for Hannah; that her body regains strength, that next week's treatment is better tolerated, that the antibodies are effective in doing their job of getting rid of any NB cells.

Thursday, July 20, 2006 8:18 AM CDT

Hannah is having a rough time in NY.
Tuesday's xray confirmed that she has sinusitus. They started her on an antibiotic. She had considerable pain during the 3F8 treatment, but a little less than Monday. She had some nausea feeling, but didn't get sick.
Wednesday's treatment was a little better with the pain. However, her heart rate and blood pressure were very high and her oxygen saturation levels were low. These are side effects that she did not have, to this degree, during the first round of 3F8s. We're trying to adjust and medicate as needed. Due to the morphine, used for pain control, she has been having problems going pee. This can get serious. So, Wednesday afternoon they gave her lasics, which is a diuretic. It causes alot of fluid to be created, however, Hannah's brain wasn't sending the message to the bladder to pee (from the morphine). So, she had the sensation of having to pee but was unable to do so. Finally, around 9:30p, she finally went. Who knew going pee was so hard to do?! Due to mom's insistence, they switched the antibiotic to a stronger one, ceftin. Which we feel will help clear out the sinusitus a bit quicker and last longer. We've made an appointment to see an ENT doc when she gets back to Tampa to address the multiple sinus infections she's had. Her eating is pretty much non-existent after the treatment. So, mom trys to get her to eat as much as possible in the morning. She's still on the megase to help stimulate her appetite. The poor thing is having alot of things put into her little body. We just hope they do their job.

If anyone would like to send a card or anything to Hannah (her birthday is next Tuesday, July 25) the address is:
Ronald McDonald House
Attn: Hannah Douglas RM# 610
405 East 73rd Street
New York, NY 10021

Please pray for Hannah; that her pain is lessened, that the side effects are minimized and that her body can handle all this. Thank You.

Tuesday, July 18, 2006 9:06 AM CDT

Hannah is in NY!
Her and mom arrived Sunday afternoon in NY. She was a bit cranky. Maybe because of the trip, maybe because she knows what going to NY means, maybe because she has what we think may be another sinus infection starting.

Monday at the clinic, things moved with the Sloan's snail pace. We kind of expected that, being the first day back in quite awhile. She had blood drawn for counts. Later, the put in the insuflon. That is the little port they put in her arm to give the GM-CSF shots (boosts white blood count), that way she isn't getting a needle stick every day. After the GM-CSF shot, she has to wait at least an hour before starting the 3F8's. So, she didn't get started with those till about 4p. Even with all the pre-meds, she had intense pain for about 30min and needed morphine. She also had some nausea, but didn't really have anything in her stomach to bring up. She went to sleep after the treatment and awoke about 7:30p asking for some apple juice. Immediately after drinking it, she got sick and then went back to sleep. We'll have to make some adjustments to try and prevent the nausea.

Today, before the 3F8 treatment, she will be getting a sinus x-ray to see what's going on in her nose. We don't want whatever it is to develop into something worse. Then, hopefully around 1-2p, she'll get the 3F8's. And hopefully, without as much pain as yesterday.

Please continue to pray for Hannah; that the pain is minimal, that the nausea subsides. And please pray for all the other little warriors too!

Thursday, July 13, 2006 8:09 PM CDT

Hannah had a clinic visit on Tuesday.
Her blood counts were all very good.
We got a call from Sloan on Tuesday afternoon. They had a cancellation and a spot had opened up for 3F8 treatment, could we be there on Monday? My response, "As in Monday, the 17th?! As in less than a week?!" So, Hannah and mom leave for NY on Sunday. I will get up there the following Sunday. It's not the easiest thing to totally change your life's schedule on such short notice, but we do it. And we know it's for Hannah.

GrandmaD & Pappy and some other family are coming down for an impromptu birthday party on Saturday. Unfortunately, Hannah will be spending her second consecutive birthday in NY at Sloan. But we are so thankful to be having a birthday, it's ok. She had her big party last week, and I know there will be a few smaller ones.

Please pray for safe travels to NY and for limited pain & other side effects during the treatment.

Sunday, July 9, 2006 2:04 PM CDT

Hannah is doing well.
Sorry it's been a little bit since the last posting.
We did get good news on the PET/CT results, they were clean. The report of the CT indicates that the lesions in the liver resolved themselves. That is awesome news! We also got back the report from Baylor on the liver biopsy. It's difficult to interpret (even to our local docs), but it seems to say the spots are benign, even though they do not confirm the focal nodular hyperplasia diagnosis. Benign is great, and since the CT does not see them, we hope that they are behind us for good. Dr. Rossbach even stated that we shouldn't even follow up with a liver MRI, just do our next regularly scheduled scans.

We also got word from Sloan that Hannah is HAMA negative. This means another trip to NY after her Temodar cycle is finished (last day is July 17). She is scheduled for another round of 3F8 antibody treatment on July 31 at Sloan. Since her last round of 3F8's was in January, I'll refresh you. This is a two week treatment, 10 days total. It is painful, due to the reaction of the antibodies, so she will be given morphine each day to manage the pain. These 3F8 antibodies are attracted to the NB cells and when they attach themselves to the NB cells, they trigger the body's immune system to take them out. It's not a toxic therapy, like chemo. It only goes after NB cells, not other healthy cells. However, as I said, it is extremely painful. It's not easy having to put her through it, but we feel it's another weapon to try and prevent any relapse.

Hannah has been having lots of fun. Today was a birthday party for Hannah and her friend Eli at the Florida Aquarium. It was really alot of fun. Thanks to mom and Cary (Eli's mom) for making the arrangements. We got to see a diver in the big "fish tank" who held up a "Happy Birthday" sign for Hannah and Eli. Then all the kids got to touch a baby alligator's tail. Then it was time for pizza and cake. Afterwards, all the kids headed outside to the water park where they got to run around and get wet. I'll post some pics soon.

Our 4th of July was pretty quiet. We went to our friend Kayla's house and played in the pool and cooked on the grill. Hannah was pretty tired, so we passed on the whole fireworks thing. Although, there were plenty of them going off in the neighborhood.

Her eating has been pretty good, with the help of some megese. We'll probably keep her on it till we go to NY. Once there, we don't expect her to eat too much during the treatment. Her energy has been good too.

Please continue to pray for Hannah and all the other warriors who fight the battle against cancer.

Friday, June 30, 2006 10:43 AM CDT

Hannah had a PET/CT yesterday.
We finally got results from the brain/spine MRI, it looks clean. Praises! We hope to have PET results Monday or Tuesday. We also got some results from Baylor regarding the liver biopsy. It seems they're not exactly sure what it is, but they are sure it's benign. So, there will have to be some more follow up on that. We're going to schedule another MRI of the liver for this month.

She is spending the week with mom while I have been traveling for work. She seems to be doing well. Her eating has been pretty good as well as her energy.

That's it for now, just a quick update with MRI results. Please pray for clean PET/CT results as well.

Friday, June 23, 2006 0:10 AM CDT

We�ve been having a great vacation.

It started Friday evening with a picnic on the beach with some friends. We picked up some seashells and dug holes in the sand and put our toes in the water and watched the sunset. It was a relaxing way to start the vacation.

On Saturday, we went to our neighbor�s, Kayla, birthday party. She had a Princess theme with everything Princess. Hannah loved it, the balloons, the cake, the presents (even though they weren�t hers).

On Sunday, we headed to Orlando and met up with a group of friends. This was the day for the �Boutique�. There were 4 little girls who got the full treatment; hair, nails, makeup. Needless to say, they all loved it. Hannah was so thrilled when they put on a �ponytail�. Then we took our Princesses to the Rainforest Caf� for dinner. Hannah was a little scared of some of the animals inside, until she realized they were all pretend.

On Monday, it was off to Disney World. First off, we watched a show at the castle with all the Princesses. We were right up front and Hannah loved it. She kept calling out to them, �Come over here�. We did lots of rides; Small World, Pooh, Peter Pan, Dumbo, just to name a few.

Tuesday was another little girl�s birthday and we had breakfast at Disney with Pooh & Tigger. Again, Hannah loved it. Then it was back to Disney for the Jungle boat ride, Country Bear Jamboree, more Pooh and Peter Pan. It was pretty hot, so we headed back to the hotel for a little break. We went back around 7p to watch the Light Parade and fireworks. Again, Hannah loved every bit of it! It was quite a day.

Hannah�s energy has been great. I�m sure in part to all the Disney excitement. Her eating has been pretty good. She�s back up to 30lbs, after having lost a couple of pounds during our recent hospital stays. She�s tolerating the temodar pretty well. She did have her brain/spine MRI today. She wasn�t allowed to eat before the scan, which was at 1p. So, she was a little cranky because she was hungry, but otherwise she did fine. We hope to have results tomorrow. Next week, on Thursday, she will have a PET/CT.

Tomorrow we�ll be heading up to see GrandmaD and Pappy for a couple of days to wind down the vacation week. GrandmaD is very excited we are coming to visit.

I�ve posted new pics on the Webshots site. Click on the link above the journal.

Please pray for clean scans!!!

Friday, June 16, 2006 9:57 PM CDT

I attended Jacob's viewing tonite.
There were lots of balloons, many shaped like frogs. They had 3-4 poster boards filled with pictures of Jacob and his brothers and his parents. They showed the many happy times they shared together. It is those times to hold dear. Heather and Donnie are amazing people, just like Jacob. And we all know that Jacob is flying free with his new Angel wings. We also know that his is in a much better place, free from pain, but it's still hard to accept. Please pray that God continues to comfort Jacob's family.

Hannah and I will release balloons on Saturday for Jacob. I haven't really told her that he has passed. I guess I will tell her that the balloons will float up to him in Heaven. I'm not sure how that conversation will go, but I will be as honest as possible.

Hannah is doing ok.
She has had some nausea, probably from the temodar. We will be trying a new "tab" form of an anti-emetic (because she would vomit after the liquid form). Her eating has been declining, so we'll start her on megese to stimulate her appetite. It just takes a little while to kick in. Otherwise, her energy and disposition have been pretty good.

Hannah and Dad will be having a week of vacation.
I'm looking forward to spending the time with her, with only limited medical interuptions (Thursday's MRI). We have plans to go to a birthday party on Saturday, then we'll spend a couple of days at Disney with some friends and their little girls. I'll be surrounded by Princess' of all types! That's fine with me. I'll post after we get back.

On June 21,22 on PBS there is a documentary called, "A Lion in the House". They followed 5 pediatric cancer patients through their treatment for 6 years. The reviews I have read said it is pretty intense as it really shows life in "our world". Some of you may want to watch. At the least, I hope it brings increased awareness to pediatric cancer.

Thank you for your continued prayers.

Monday, June 12, 2006 2:45 PM CDT

I know that many of you have been following and praying for Jacob. I am deeply saddned to have to tell you that he passed on last night. Jacob is free from pain and flying free with his new Angel wings. I know his family is grieving, and I also know that they have a deep and unwavering Faith. Please pray for their peace and comfort during this time.

Hannah had a clinic visit today for blood counts.
Her numbers looked good, especially her platelets which had been under 100 since she was in the hospital with the fevers. Today they were at 116 with an ANC=1674.

She continues to do very well. Her energy is great. Her eating is...better. There's no consistency to what she will eat. It's basically hit or miss, offering her lots of options and hoping she will be interested in one. She is drinking quite a bit, that's good. She's been on the temodar about a week now with no adverse effects (except some nausea on the first night). We continue to do our little "Song & Dance" at med-med time and she usually gets through it in about 15-20min.

She seems to be enjoying her new teacher and classmates. She goes to school on Tuesdays & Thursdays. She is counting pretty well and is recognizing some letters too. She still enjoys playing on the computer; games & coloring. She is really pretty adapt at it.

She's still scheduled for a brain/spine MRI next week and a PET/CT the following week. We were hoping to get a liver MRI done with one of those two scans, but were unable to do so. The CT will show us the liver (that's how the spot was originally detected), it's just not quite as detailed as the MRI. We'll have the liver MRI done by the end of July.

Please remember to pray for Jacob's entire family. They are all wonderful people. And pray for ALL the warriors who fight, everday. It is truly a battle of life & death.

PS-PappyD was able to go home last Tuesday and is doing ok. Still in some pain, but otherwise ok.

Monday, June 12, 2006 2:45 PM CDT

Monday, June 5, 2006 10:05 PM CDT

Hannah had a clinic visit today.
Her blood count numbers looked pretty good; her red blood=11.2, her platelets=95 (a little low) and her ANC=3600. She also had an Ommaya tap (to pull CSF) and that came back clear.

She is scheduled for a brain/spine MRI and a PET/CT this month. We are also trying to schedule another liver MRI to monitor the "spots". A frozen sample of the liver biopsy will be sent to Baylor University in Houston. They will confirm the diagnosis of the biopsy. We feel confident in the pathologist's reading at St. Joe's, but feel that a second opinion is justified.

On Tuesday, she will start back on the oral Temodar. It's been a wonderful week with no "roll-up med meds", but also know that she has to start again. She is still HAMA positive, but according to Sloan, she is "trending down". When she is HAMA negative, we will head back to NY for another round of 3F8 antibodies. Who knows when that will be.

She had a good, relaxing weekend at Dad's. On Friday, we went to the Taste of Pinellas in downtown St. Petersburg. It is a fun event with lots of food and music and the proceeds benefiting All Children's Hospital. She ate 2 hot dogs (sausages really) on a stick. And we did some dancing with her neighbor friend, Kayla. Saturday was a bit of a lazy day around the house. We washed her new Cinderella car (see home page pic), then a little cruise. Sunday was another day around the house, just relaxing and playing. She had great energy and spirits. Her appetite is increasing with chicken noodles still being her favorite.

I know I've said this before (and I'm aware of my bias), she is an amazing child. She has such great spirit and a "zest". She's intoxicating. Considering all that she has been through, it's amazing that she is so happy and laughing and smiling and just a joy. I gain strength from her. Her smile reminds me of what we're fighting for, the hope of a brighter future. I can't say that it's always easy, I can't say that sometimes I wish things were different. But I can say that she inspires and she rejuvenates and she lifts me up in ways that I can't even explain. Just watching her play, brings on so many emotions that I sometimes have to hold back the tears. Time is so, so precious. It's a shame that sometimes we get so busy, and so consumed by our day to day working and living, that we miss the simple joys of "being". Thank God that our children remind us, and ironically, teach us to reflect and to appreciate and to enjoy life.

Thank you again for your continued prayers for Hannah.

PS-PappyD is recovering pretty well following last week�s surgery. He still has some pain but was able to do some walking and has even eaten a little bit. And we hope he will be able to go home this week.

Thursday, June 1, 2006 5:04 PM CDT

Hannah went to pre-school today.
It's her first day back in quite a while. It's the start of the summer session, so she had a new teacher, Miss Dana. There aren't any kids from her previous class in this class. All new faces. She was a little apprehensive at first, but seemed OK after a little time and play. She ate ok and took a nap and Miss Dana said she did pretty well.

Her blood counts from yesterday looked good. We are in the "Off" week of temodar, which is nice for everyone, especially Hannah. She'll start again on Tuesday. The docs are still concerned about the smaller lesions in her liver. (Only the "big spot" was biopsie.) So, we will do a brain MRI and PET/CT as soon as they can be scheduled. She would have been having them the beginning of July anyway, so they'll just be done a little earlier. We will probably be scanning her liver pretty frequently to monitor all the "spots". Her bone marrow sample was sent to Sloan for special testing. They have a very sensitive test there for microscopic NB disease. We will have to wait for results. (The bone marrow results from St. Joe's came back clean. Praises!) The slides from the liver biopsy will be sent to Sloan as well for additional review.

On a side note, PappyD had surgery today to remove a growth in his colon. Thankfully, the surgery went well and the growth was benign. There's that wonderful word again! The Lord continues to bless.

Thank you all for your continued prayers.

Wednesday, May 31, 2006 6:04 AM CDT

Hannah had a very good weekend.
It was so nice to relax and enjoy not being in the hospital. On Friday, GrandmaD came for a visit. She left on Saturday to get back home to Pappy. Saturday night, we went bowling with Kayla and her family. Hannah really enjoyed it. Sunday was a lazy day. Monday was a cookout and hanging out in the pool.

Overall, her energy was good. Her appetite is coming up. Her spirits were good. On Sunday, I saw a Hannah we hadn't seen in a few weeks, which was great. She has a clinic visit today, just for blood counts.

We are still "basking" in our great news. It really does change our whole outlook on the future. So glad Hannah does not have to endure more toxic treatment. And that maybe we'll have somewhat of a "normal" summer.

Thank you all for your prayers for Hannah. We know that the Power of Prayer was responsible for our miracle last week. Please continue to pray for her and for all the other warriors.

Friday, May 26, 2006 8:48 PM CDT

PRAISES!!!PRAISES!!!
Today we received wonderful news. The preliminary pathology from the liver biopsy showed a BENIGN growth, focal nodular hyperplasia, to be specific. What a wonderful word...Benign. Needless to say, we are very delighted and thankful for this news.

So, instead of preparing for a brain MRI and a PET and other tests for the weekend, Hannah was discharged from the hospital around noon today. There was a little problem with her port this morning, it "locked-up". They put in a very expensive "Drano" which thankfully cleared it up.

Her energy is still a little low and she is still a bit sore from the bone marrow aspirations. We do hope that her appetite will come back up. She hasn't had any fevers since Tuesday and her cough is pretty much gone.

She will be at Dad's house for the weekend. We will have a "normal" and relaxed holiday weekend. Maybe a visit to Chuckie Cheese or Putt Putt golf or the beach, NOT the hospital. We hope you also enjoy the holiday weekend.

We praise and thank God for this and know that the Power of Prayer is at work. Thank you all for your thoughts and prayers for Hannah. Please continue to pray for Hannah and also also for Jacob and his family as he continues his fight.

Thursday, May 25, 2006 5:42 AM CDT

Hannah is still in the hospital.
She hasn't had any more fevers while on the IV antibiotics. Her cough has eased up some. She is not eating or drinking very much at all.

Today, we will be doing a liver biopsy and bone marrow aspirations at 1:30p. This was just decided and scheduled yesterday after talking with Dr. Kramer and Dr. Rossbach. Because we fear the disease has spread in the liver, surgery is not the best option to do first. First, we will have to do a couple rounds of hi-dose chemo and see if the disease responds. Then we will have to evaluate to see what to do next. In addition to the biopsy, she has to have some other tests to determine organ function before starting chemo. She will get a catheter during the biopsy to collect urine for 24hr to check kidney function and urine markers. She will have an echo done to check heart function and special blood work to check liver enzyme levels.

We should get preliminary pathology today on the biopsy. The bone marrows take a couple of days. All of this is happening pretty quickly, after having "waited" for a month. We have some pretty big decisions to make, and soon, regarding how aggressive to treat.

Please, Please, pray the biopsy procedure goes smoothly, with no complications and that we have the wisdom to make the best decisions for Hannah.

Tuesday, May 23, 2006

Hannah had a clinic visit on Monday.
Her blood counts looked pretty good. While we were there, we spoke with Dr. Wynn who had the results from the MRI. It's not what we wanted to hear. The primary spot had increased in overall size to about 11mm, and there are now 3-5 smaller "areas of enhancement". We have talked about whether or not to do a biopsy or proceed with the surgery. I feel we should get this thing out, then look at it. We have sent the scans to Sloan. We'll see what they have to say. I'm hoping they can move up the surgery date.

Today, Hannah was running a low grade fever that popped up to 102F. So, she is back in the hospital. Her cough is still hanging around, sometimes a little better, sometimes worse. We really need to see what's going on in her lungs. She's been on antibiotics now for almost 2 weeks. We want to make sure this festering cough doesn't develop into something else. The usual drill; fluids, IV antibiotics, cultures, chest xray...wait for results.

That's all I have for now as I'm on my way up to the hospital to see the little one. I'll post again when we have more info.

Thank you all for your continued prayers for Hannah.

Sunday, May 21, 2006 7:20 AM CDT

Hannah did have her MRI scan on Friday.
She still has a little cough. That concerned the anesthesiologist enough for him to call Dr. Rossbach. We decided to proceed and Hannah did fine. She came out of the sedation a little grumpy, but soon came around. We hope to get results on Monday.

Hannah is having a low key weekend at Dad's house. On Saturday, we had a couple of friends over to play. We went to the park and then to Dairy Queen for a cold treat.

She does still have the cough, which we hoped would be gone by now. She has to take 2 pills of antibiotics, 3 pills of chemo, and albuterol breathing treatments, daily. Her energy does seem better and her appetite is slowly coming back. Finding her something she is interested in eating does take some effort. But at least she does have an interest in eating.

Please continue to pray for good results from the MRI and the she continues to feel better.

Thursday, May 18, 2006 8:41 AM CDT

Hannah had a rough day on Wednesday.
She was still very low on energy. The new antibiotic caused immediate nausea, which brought up the little she had eaten. She also had some diarhea, probably from the antibiotic as well. We switched to the pill form of the antibiotic. Her body seems to tolerate the pill better. Of course, that adds 2 pills a day to the 3 chemo pills she's taking. She has regressed a bit in the pill taking department. I think it's a control thing plus being in and out of the hospital. It can be quite frustrating for all involved. She has a very strong will, which we have to remind ourselves is a good thing. So, we continue to cheer and praise and plead. She is also getting some breathing treatments to help clear her lungs. She doesn't care for these either.

Thursday has started off better. She's feeling a little better and looking better. We hope this upward trend continues. Maybe some rest and being at home has done the trick.

Tomorrow is the liver MRI. We are optimistic that the scan will get done. We probably won't have official results till Monday, but hope to get some idea about size tomorrow.

Please pray with us that the spot is gone, or at least hasn't grown anymore and that Hannah continues to feel better.

Tuesday, May 16, 2006

Hannah was discharged this afternoon.
Her temp has been normal with the IV antibiotics. We hope this continues at home on the oral antibiotics. Her chest xray showed a slight improvement in the infiltrates in her lungs, she is still coughing quite a bit. She is still pretty low on energy and appetite. She has lost 2.5lbs and now weighs 29.5lbs. We are a little concerned about the lack of appetite. Hopefully, being home and starting to feel better will bring back the appetite.

We are still hopeful that she will be well enough for the scan on Friday. That will depend on how much she is coughing by then. We have not been to this particular facility before, so there is no history there. We'll just have to see how it goes.

Thank you for your continued prayers.

Monday, May 15, 2006 2:09 PM CDT

Hannah was re-admitted on Sunday for another fever.
She had been running a low grade temp during the day and in the evening, it went up to 101.5F. So, her Mom took her into the hospital. Again, the usual routine; cultures, IV antibiotics and breathing treatments. The docs say her lungs sound clear, but we'll get another chest/sinus xray. Monday she's doing a little better, but still lethargic and coughing. She really hasn't been eating either. Her blood counts looked OK. So, we're still not sure exactly what's going on. Hopefully, some of the results will give us some answers. If it's viral, then it has to "run it's course".

Please continue to pray for Hannah and all the warriors.

Sunday, May 14, 2006 6:27 AM CDT

Happy Mother's Day!!!

Hannah was discharged on Saturday around 11am.
The chest xray showed a "pre-cursor" to pneumonia. So it was a good thing we got her in when we did. The IV antibiotics should keep anything else at bay while she fights this off. She hasn't had a temp since Thursday night. She still has a nagging cough and grumpy at times, but other than that, she's good.

After she was discharged, we went to Mom's church where several friends prayed for her complete healing. It always amazes me how so many people care for our little one and are praying for her.

Saturday night, we went to see the Disney Princess' on Ice with our neighbor-friend, Kayla. Both girls had a wonderful time. It was quite a show with all the Princess' in attendance, skating around to the story. Alot of the little girls were wearing their Princess dresses too. It looked like a real gala. Thanks to the Pediatric Cancer Foundation for providing the tickets to a memorable night.

Please continue to pray for Hannah. She is still not quite 100% and she has an MRI on Friday to evaluate the "spot".

Saturday, May 13, 2006 6:43 AM CDT

Hannah was admitted on Thursday for a fever.
She spiked up to 102F around noon on Thursday. Mom took her into the clinic and after a few hours of waiting, Hannah got into her room. It was the usual routine for a fever; pull blood, urine and throat cultures and start IV antibiotics. She did spike a temp again Thursday night, so she got some tylenol. Friday, she woke up feeling pretty good. She actually had a little appetite (she hasn't really been eating for the past couple of days). Then she got a bit lethargic until the afternoon. But no more temps. They also did a chest xray. The docs are thinking it's something viral or walking pneumonia. Hopefully the results of the chest xray will give us a hint. So far, the cultures are negative. Unless something grows in her blood culture, she should be able to come home sometime during the weekend.

Thank you for your continued prayers.

Thursday, May 11, 2006 6:41 AM CDT

Sorry for the delay between updates.

Hannah had a clinic visit on Monday, her counts were all great. However, she did have a little cough, but no fever. The docs told us to monitor her closely. By Tuesday afternoon, the cough was persistent and she had a low grade fever and looked tired. On Wednesday, she had a runny nose too and was feeling pretty miserable. So, Mom took her to the clinic and got a scrip for some antibiotics. We think it's another sinus infection and want to stop it before it turns into something else. Her temp was a little bit higher Wednesday night, right on the line of whether or not to be admitted. Hopefully that means her body is fighting the infection, and her temp won't go higher. We'll just have to see.

Speaking of waiting, we're still waiting for next Friday for her MRI. There's really not a whole lot we can do until then. And I must admit, it's driving me crazy. When there is so much riding on a scan, then having to wait and wait, it's not fun.

This past weekend, we made a trip to Silver Springs in Ocala. It's a natural attraction with lots of animals and glass bottom boat rides. We saw lots of alligators and monkeys and turtles and fish. She really enjoyed it and has asked to go back several times now. I'll try to get some pics posted soon.

Please pray that Hannah will feel better soon and get over this infection, and that next week's MRI will show the spot hasn't grown (if it's gone, that would be nice too).

Wednesday, May 3, 2006 6:11 PM CDT

Hannah is doing well.
She is enjoying school. She started taking swimming lessons. She is going to "Tumble-Tots", a gymnastics program. Doing some "normal" things.

Her blood counts look good; red blood=11.1, platelets=132, ANC=3479. She is still taking the oral chemo, temodar. She is still a champ about taking the pills. Although, some days are harder than others.

She is scheduled for another MRI on May 19. It was originally scheduled for May 15, but that had to be moved because of an equipment issue. This will be done at a satellite location of All Children's in Tampa. They use propofol and we hope all will go smoothly. Depending on what that scan shows, we will know more what direction to go. If the spot hasn't grown, we will probably continue to monitor. If it has grown, probably surgery in June in NY.

Please continue to pray that the "spot" will be gone, or smaller, or something other than NB. And please continue to pray for all the other warriors.

Thursday, April 27, 2006 5:54 PM CDT

We heard from Sloan on Wednesday.
They would like to re-scan Hannah's liver in 3 weeks to see if the "spot" continues to grow. I think we are all holding on to hope that it is something other than NB. In addition, according to Dr. La Quaglia, this will not be an "easy" surgery on Hannah. And he doesn't want to go in unless we are sure it's NB. We're all for that. However, the waiting is excruciating. We know there's something there, yet we don't know what it is. To some degree, we have to trust their judgement and experience. As well as try to keep our eye down the road. If we have to remove part of the liver, that will affect what sort of chemo regimine will come after. The liver has to filter out those toxins.

While I can't say that I'm thrilled with waiting, we do have to consider many things. And right now, Hannah is doing well. Her counts are great, everything else is clean. There is also the possibility that we may try some more chemo before surgery. Really, for now, it will be a waiting game till the next scan.

So, prayer warriors, let's pray in ernest that the spot doesn't grow or that it goes away. And Thank You for your continued prayers.

Tuesday, April 25, 2006 5:33 PM CDT

Hannah had a clinic visit on Monday.
Her blood counts were all very good. She is still on the oral chemo and will finish up the antibiotic this week.

GrandmaD and Uncle David came to visit for the weekend. We enjoyed our time together. We went to the Pier in St. Pete. Hannah had fun feeding the pelicans. It was a beautiful day. She has good energy and a happy, sweet dispostion. She's amazing.

At this time, I'm sorry to say that we don't have a firm plan from NY. A couple of docs were out of town last week, so we hope to hear their thoughts very soon. It has been a very frustrating time, not having a plan to execute, not knowing what's going on inside Hannah's body. The good thing is that she is acting like a normal 3yr old, which is good. I will update as soon as there is more to report.

Please continue to pray for Hannah and the other warriors.

Wednesday, April 19, 2006 7:45 AM CDT

Hannah had her MRI yesterday.
Unfortunately, the results were "inconclusive". Not exactly what we wanted to hear, (actually not even close to what we wanted to hear). We sent a disc up to Sloan for their review. It appears that we will have to go get this out to see what it is. There is still a slim possibility that it is a hemangioma, but that is looking less likely. We hope to hear back from Sloan today or tomorrow with their impression.

Hannah fought the sedation, liquid valium, pretty hard. We didn't think the scan was going to happen. But she finally went down enough to get her into the scanner. She made it through just fine and actually woke up pretty good.

Thanks to all of you for your prayers and support. Please continue to pray for Hannah as she continues her fight and for all the other warriors in this battle for life.

Saturday, April 15, 2006 3:09 PM CDT

Well, we got some feedback from Sloan.
They believe the new "spot" could be a hemangioma (blood tumor), which is benign. This would explain why the PET was clear. So, Hannah is scheduled to have an MRI of her liver on Tuesday. We hope this will give us definitive information and confirm a hemagioma. If not, we will have to consider the next option, probably a biopsy or surgery.

Hannah is HAMA positive, again. So, she'll be starting back on the temodar (oral chemo), on Monday. She really tolerated it well last time and we hope this cycle is the same. We all have enjoyed the break from "roll-up med-meds", but it's time to go back on them.

She'll be spending Easter with her mom and grandparents in Lakeland. I'm sure the Easter Bunny will find her there.

Please pray with us that this "spot" is indeed a hemangioma and that the MRI confirms that.

Wednesday, April 12, 2006 10:33 PM CDT

We received some bad news on Tuesday.
Hannah�s CT showed a 9mm �spot� on her liver which was not there on her January scans. In our world, a new �spot� is not a good thing. The PET scan was clean, which is a bit puzzling. If this is an �active� tumor, it should have shown up on the PET. The fact that it has grown this quickly since January, would seem to indicate that it�s pretty active. We met with Dr. Rossbach on Wednesday to discuss our options. He advised us that we should probably get �it� out and pretty quickly. While we continue to hope that it is something besides NB, we feel that we should proceed as if it is. We sent copies of the CT and PET scans to Sloan for their opinion and hope to hear from them on Thursday. At this point, I have to say that it�s pretty likely that we will be heading to NY, not for 3F8s, but for surgery. The surgeon there, Dr. Laquaglia, is renowned as the best surgeon for NB. And although it�s a small �spot�, we want to make sure we�re putting her in the best hands. It�s possible there may be more disease that is not showing on the scan and his experience with NB would be invaluable.

On a lighter note, Hannah has a sinus infection. Her nose has been running for the last 2 weeks. So, along with our consult this morning, we got a scrip for antibiotics. She hasn�t had any fevers, and that�s what we want to prevent. Hopefully, this will clear her up.

Also on a lighter note, this past weekend, we went to visit GrandmaD. We celebrated Easter a little early. So, we colored eggs. Then we hid the eggs. Then Hannah found the eggs. Hannah always enjoys playing with Baby & Trouble, Pappy�s little dauchsands.

Needless to say, this news has hit us pretty hard. I have to say, I was worried about the MRI and relieved when it was clean. I really didn't expect anything to show on the CT. Except for her brain, she hasn't shown any signs of disease in her body since diagnosis. I'm afraid this beast has once again, raised it's ugly head. This shows that we cannot let down our guard, even for a moment.

We ask you to pray for Hannah. Pray that this �spot� is a benign �something�. Pray that we will make the best decisions for her. Pray that the Lord will keep His hands on her as she continues to fight this beast.

Tuesday, April 4, 2006 7:37 AM CDT

Thursday, April 6
We received word that Hannah's MRI results were clean. Praises!!! No new areas of disease were seen. The spots in the left posterior lobe are still gone, the right front temporal lobe (this is where she had the biopsy/clot in July '05) showed decreased enhancement. This is good. It means that area is clearing up and does not appear to have active disease. Still waiting on bone marrow results. Friday is PET/CT at 1p and spinal fluid draw from Ommaya. Please pray for no problems with sedation and clean results.

On Tuesday, we went to an event called, "Fashion Funds the Cure" sponsored by the Pedicatric Cancer Foundation. It was held at Saks 5th Ave, so Hannah got to do some window shopping and her face done up. They had cancer patients walk the runway after a day of pampering. You could tell it made the girls feel like a million bucks. There was a good turnout, so hopefully lots of money was raised for research.

Tuesday, April 4
Hannah had her MRI and bone marrows on Monday.
All went pretty smoothly. She fought pretty good when we tried to put the mask on for the sleepy gas. But then her port was accessed while she was asleep, so it saves her from experiencing that. No matter how many times I hold her for the "sleepy juice", I always tear up when they put her on that table and hook her up and load her into the machine. That part just doesn't seem to get easier. Now the fun part, waiting for results. Hopefully we'll have something by the end of today on the MRI, the bone marrows take a couple of days. Her blood counts were good, as well as her chemistry levels.

Over the weekend, GrandmaD came for a visit. We went and had pictures taken at Sears. Hannah was such a doll. She did all that was asked of her. I think we got some good pics, at least of Hannah. Then she went to a church carnival with her mom. She got to play with her best friend, Eli. She always enjoys that.

That's about it for now. Will update again with results.
Please pray for clean scan results and bone marrows.

Monday, March 27, 2006 3:28 PM CST

New Pics added! Click on the pictures link above.

Hannah had a clinic visit today.
Her blood count numbers looked good: red blood=11.9, platelets=168 and ANC=2040. We have not seen the dip we were expecting. Not that we're complaining.

Hannah will be getting the full workup next week. On Monday, she will have an MRI of her brain & spine, and bone marrow aspirations. On Friday, she will have a PET/CT and a regular CT. We also hope to draw blood for another HAMA test to send to NY.

She has been doing great. She has good energy. Her eating is actually ok. Still a bit picky, but what 3yr old isn't? She's enjoying school. Her latest "thing" is Mermaidia. Which, as best as I can figure, is a combination of fairies and mermaids. Anyway, she's really into them. So, we have started a new collection of dolls.

She had a good weekend. She's taking her "roll up med-meds" like a trooper. It still takes a little bit to get her started, but once she does, it goes pretty smoothly. This cycle of temodar will end on April 10. If she is still HAMA positive, we will start another cycle. If she's negative, then we'll make plans for NY.

Please pray for clean scans and bone marrow aspirations. That's the first step.
Also, please pray for Jenna. On Tuesday she will be getting her first treatment dosage of the 8H9 antibodies. She has had a tough time getting to this spot, with some complications. Her and her family need your prayers as they go through this next phase.

Monday, March 20, 2006 4:34 PM CST

Hannah had a good weekend.
She got to go out on PopPop's boat. I heard she even drove a little bit. On Sunday, we went to a little church carnival. She got to ride some fun rides, even a big ferris wheel. She loves rides that go fast and spin.

She had a clinic visit today, her numbers were good: Red blood=10.9, platelets=155, ANC=1563. We got word last week from Sloan that she is still HAMA positive. That means we will re-test for HAMA in mid-April. So, no trips to NY till at least then. We are scheduling some scans and tests for April. The usual workup; MRI, PET/CT, urine, bone marrow. Just to make sure nothing is starting to happen. I know, most of you probably think that's a little paranoid, and you're probably right...but still.

She's tolerating the chemo really well, no nausea and her energy is good. Oh, I can't believe I haven't mentioned this before. About 2 weeks ago, we started something different with her pills and since then, she has been taking them, everyday, like a champ. Another parent and then one of our clinic nurses, suggested wrapping the pill in a fruit roll-up. OK, worth a shot. Beats holding her down and making her cry and scream. The first day we tried it, it took a while but she put the "roll-up med med" on her tongue, then used her fingers to push the pill to the back of her tongue and...gulp. Down it went. Then she did the next two pills the same way. Needless to say, there was quite a celebration and a trip to the store for a toy. Now she seems to like us to use our fingers to push the pill back, but she's cooperative. That makes things sooo much easier, all the way around. It actually does a few things; 1-masks the medicine taste, so it actually tastes good, 2-it protects the pill, so if there is a mistake, the roll-up disolves before the pill does, 3-when the roll-up gets a little wet, it gets slick and slides down easier. All this from a fruit roll-up. Maybe I should contact the drug companies and tell them to start wrapping all their pills in fruit roll-ups.

With her good counts, she'll be going to school tomorrow. She really seems to be enjoying it. We thought she would but didn't know how she would adjust. Ms. Susan said she is doing wonderful. We're so glad.

Thank you for your continued prayers for Hannah. Please don't forget the other warriors like Emily & Jenna & Jacob, they need your prayers too.

PS- I know I haven't gotten any new pics up yet. I will work on that this week, I promise.

Wednesday, March 15, 2006 6:22 AM CST

Hannah returned to school on Tuesday. She was very excited.
Her new teacher is Ms. Susan and Ms. Hina is her aide.
They were having a special day and all the kids got to dress up. Most of the girls had Princess dresses on. We didn�t know about the dress up, but Ms. Susan found a pretty dress for Hannah to wear. Then all the kids did a �parade� around the school. Hannah was a little �clingy� at first, but it didn�t take long for her to get comfortable.

She also had a pretty full weekend at Dad�s.
On Saturday, we went to the Shriner�s Circus. She loved the rides and seeing the animals; giraffes, goats, llamas, even a kangaroo. She also got to ride a pony, yeeehaw!
On Sunday, we visited with some friends. She had an absolute blast playing with Gabby (the little girl who came to visit us in NY) and a new friend Taylor. There was Princesses galore. She really had a fun day, although she did have a little bit of nausea in the evening.
On Monday, we had a clinic visit (more on that later), then GrandmaD came down to visit. We went to the park and flew our new Dora kite (Daddy did most of the flying) and fed the ducks. After dinner, we headed down to the beach to watch the sunset. Hannah loved playing in the sand and picking up seashells and playing in the water and, of course, feeding the seagulls. It was another fun day.

The clinic visit went well. Her blood count numbers were very good: Red blood=11.2, platelets=158, ANC=1716. We also drew blood to send to NY for the HAMA test. We will see if she is still positive or if she has gone negative and is ready for another round of 3F8�s after she finishes the temador.

Thank you for your continued prayers for Hannah.

PS- I will try to get some pics from the weekend added soon.

SUNDAY, March 12, 2006
Today is the two year mark of Hannah�s diagnosis of neuroblastoma.
Who could imagine that a word you�ve never heard before would change your life forever?
I try to keep this website focused on Hannah and her daily life, but I think this is an appropriate time to reflect.

Many of you may recall that Hannah was originally misdiagnosed with a bone infection in her leg. After a week in the hospital, and with some improvement, we took her home. After a few days, it became very clear something else was wrong, we took her back to the hospital. I will never forget when our pediatrician said that he was going to ask for a hem/onc consult and an MRI of her head. I knew what hem/onc meant, I knew that it wasn�t good. I recall Dr. Rossbach, the hem/onc doc, telling us that it was probably either leukemia or neuroblastoma. And as unbelievable as it was, wishing for leukemia, because it has such a higher cure rate. I remember that Friday, March 12, 2004 when preliminary results said blue cell tumor, neuroblastoma. I remember the tears, and the overwhelming feeling of helplessness and despair. We had to wait 4 days to begin treatment because of all the testing that had to be done first. I remember that Hannah was on a morphine drip and slept almost 24hrs a day. I remember the agony of not knowing if she would even make it through to begin treatment, the frustration of waiting and waiting. The night she started her first chemo treatment was a celebration. That was the start�that was two years ago� Hannah was 19 months old.

During the past two years, I have seen so many things that I would like to forget. I have felt so many things that I will never forget. I have met so many other children that, like Hannah, are fighting for their lives every day, and with such courage. I have spoken with so many parents who have the same fears as I do. I have found strength I never knew existed. I have cried more than I ever believed I could. I have prayed more than I ever thought I would.

Unless you�re a part of this pediatric cancer world, it�s hard to understand what becomes �normal�. It�s �normal� to go to the hospital for a week if your child has a fever of 101.5. It�s �normal� to give meds to your child almost every day. It�s �normal� to know your way to the radiology department, even in different hospitals. It�s �normal� to read oncology journals. It�s �normal� to have to decide how much morphine to give your child. It�s �normal� to know nurses, all over the hospital. It�s �normal� to hold your child as they�re poked for the umpteenth time. It�s �normal� to be able to recite your child�s medical history. It�s a world that most people don�t think about, unless you�re in it, and it�s your life.

I can�t put into words what the past two years has been like. It has been such a rollercoaster of emotions, such a challenge of strength, such a mind numbing experience. As dad to the most precious little girl in the world, I feel blessed. As a parent to a child with cancer, I feel...humbled. I have had to accept that all of this is out of my control, it�s in God�s Hands. I can�t make the cancer go away, even the doctor�s can�t make the cancer go away. We can do our part, but ultimately, it�s up to Him. And I don�t know how He decides who makes it and who doesn�t, I just pray that Hannah will.

Thank you for your continued prayers for Hannah.

Monday, March 6, 2006 4:54 PM CST

Hannah had a clinic visit today.
Her blood counts were very good: Red blood=11.0, platelets=142, ANC=1180. We are just a week into this chemo, so these will probably come down some, but they were good numbers to see.

The pill thing is still very hard. She is a strong willed little girl. I have to keep reminding myself, that's a good thing. However, if she doesn't want to do something...you get my point. We have had to resort to holding her down and pretty much pushing the pills into her throat. It's not fun at all, but we're getting better at it. She bounces back pretty quickly though and is ready to play as soon as it's over. But it's so hard to do when it makes her cry so much.

On Sunday, Hannah and Dad went to the Spring Festival sponsored by the Children's Cancer Center. They do such a great job of putting on a fun event for the kids. The new pic at the top of the page shows Hannah with her face painted like a "Mermaid Princess". She loved it so much, she wouldn't let me wash it off. We did some dancin' and played some games and had some popcorn and cotton candy. It was a beautiful day and she really had fun. Thanks again to all the staff and volunteers who helped make it an enjoyable afternoon.

She continues to do really well. Her energy and appetite are good. She hasn't really had anymore nausea. She's excited about going back to school. If her numbers are good next week, we hope to let her go a couple of days and see how it goes.

Thank you for your continued prayers.

Wednesday, March 1, 2006 10:38 PM CST

Hannah had a clinic visit on Monday.
Her blood counts were good; red blood=10.3, platelets=118, and ANC=953. She also had some spinal fluid drawn from her Ommaya port, that will be sent to Sloan for analysis.

On Tuesday, she started on the oral chemo, temodar. There are 3 pills every day. Needless to say, she was not happy about taking pills. It's been quite awhile since she has taken pills. She is more cognisent now, and stronger. When she doesn't want to do something, it's not an easy task to overcome her wishes. She will put the pills in her mouth, she will take sips of water...she just won't swallow the pill. These must be taken whole, they cannot be crushed up or mixed with anything and they must not break open in her mouth. We have had to physically force the pills into her. We hate having to put her through that and pray that she will learn to swallow and this will get easier. I can't see repeating our first two days of this for the next forty days. It's not been fun, for anyone. Actually, it's pretty torturous on all involved. She also had some nausea on Tuesday night, 3 bouts of vomiting after she had gone to sleep. We will give her some Zofran to try and prevent the nausea.

We have decided to postpone her going back to school for at least a couple of weeks, till we see how she handles the chemo, nausea and counts. Plus, it's still flu season and we definetly don't need to deal with any of that.

We did make it up to see GrandmaD and Pappy over the weekend. They both have birthdays in February. So, we had a birthday party. Hannah was a bit upset that it wasn't her birthday. But once we got to the party with the cake and balloons, she kinda forgot about it (since she was helping opening the presents anyway!)

Please pray for Hannah: that the pill taking gets easier for her, that the side effects of the chemo are minimal, that the chemo is effective.

Please continue to pray for Jenna and Emily and Jacob and all the other warriors. Thank you.

Tuesday, February 21, 2006 10:08 PM CST

Today brought some good news and some disappointing news.

First, the good. The results of her endocrinology tests came back, all normal levels. This means that there doesn't appear to be any deficiancies in the hormone levels produced by her thyroid and pituitary glands. We will probably have them checked again in 6 months. This is excellent news as we were worried there might have been damage to these glands from all the treatments. Apparantly not, that's great.

Now, the disappointing. We got a call from Sloan tonite. Hannah's HAMA positive. This means that her immune system has made antibodies against the 3F8's and that if she were given 3F8's now, they would be destroyed before getting to the nb cells. So, this means she will not be going to NY on Sunday as planned, to start the second 3F8 cycle. Instead, she will be starting low dose oral temador (chemo) on Monday. She will probably be on this chemo for about 40 days. We're not sure how this will affect her counts, which have been doing so well. This is also an oral chemo, which means pills, which means getting her back into taking pills, they cannot be crushed up. They must be taken whole. This may not be too much fun. We will have to go into our "med-med" bag of tricks to convince her to take them. We hope the side effects will be minimal. In about a month, we will check for HAMA again. Same drill; if HAMA negative, we go for another 3F8 cycle. If positive, we do something else (chemo or accutane) and wait to go negative.

In addition, we don't know if being on the temador will keep her from being able to go back to school. Depending on how her counts are affected, we may have to postpone.

So, as you can see, in this cancer world, everything can change in a day. We had hoped to get another round of 3F8's in before she HAMA'd, that didn't happen. We will adjust and continue on in our battle.

I'd like to ask you to pray for another brave warrior, Jenna, and her family. We met them on our last trip to NY. Like Hannah, Jenna has nb relapse in her brain. Today she endured 8 hours of brain surgery and will have to endure another 4-5 hours tomorrow, to remove tumors from different areas. Please pray for the surgery to be successful and complication free and pray for strength and peace for her and her parents, Joe & Elise. Jenna's site

Friday, February 17, 2006 9:33 AM CST

Hannah continues to do well.
She had a long visit to the hospital on Wednesday for the endocrinology test. It turned out to be 3 hours long. But when she can't eat, that makes for a cranky girl. The blood they collected will be sent out for analysis. We hope to get the results in a week or two. Her blood counts looked really good: red blood=9.9, platelets=116, ANC=1121. So, it looks like she's on the upswing. She also had blood drawn for the HAMA test. That was sent to NY for testing. We'll get those results on Wednesday (Feb 22nd), if it's negative, we'll start her on GM-CSF shots and head to NY on Sunday, Feb. 26th, for her next round of 3F8 treatment. If it's positive, we'll have to wait and reschedule. We're hoping it's negative so we can continue on schedule.

After this round of 3F8s, we're hoping to get Hannah back into school, at least for 2 days a week. We think it would be good for her to have the social interaction with kids her own age. Of course, we're also worried about the "ickies" she could catch. So, it will depend on how her blood count numbers look. On Thursday, Hannah and Mom visited her old school to check things out. Everyone was glad to see her. Hannah was so excited to see Mr. Mike. He sings and plays guitar at the school. She didn't want to leave.

Her energy and spirits have been great. Her eating has steadily improved. Although, she's still pretty particular to what she'll eat and when. Her hair is still coming in, it's a bit darker than before. She's been doing great with the potty thing, only a couple of accidents. Overall, she's doing very well.

That's about it for now. Please continue your prayers for Hannah and the other little "warriors" who fight this beast.

Friday, February 10, 2006 7:45 AM CST

Hannah has had a good week.
She had a clinic visit on Monday to check blood counts. Her ANC was a little low, 700. This was a little concerning. We didn't expect it to be low. So, she had another clinic visit on Thursday. Her ANC was 1060. It was good to see it is on the upswing. (Remember, ANC is an indicator of how her immune system is doing. And below 500 is at high risk for infections.) Her red blood and platelets are holding steady.

She had her first day of "TumbleTots" on Thursday. Mom said she had a great time running and jumping and learning how to roll.

Next week, she will have her HAMA test to determine if we can go back to NY as scheduled at the end of February. She will also have an extensive endocrinology test (5 hours long). During the test, she won't be able to eat at all. They will draw many blood samples at different time intervals. The blood is then analyzed for hormone deficiancies. We are doing this test because the endocrinologist said she had "borderline" results from the last test. Hopefully, this test will give us some specific levels and determine if any supplements should be started.

We are looking forward to a nice weekend. GrandmaD is coming to visit and maybe we'll get a playdate in as well.

Thank you all for your continued prayers.

Sunday, February 5, 2006 9:42 AM CST

Hannah is Home!

We were scheduled to fly out of NY at 7p on Friday, but because of some severe weather in Tampa, our flight was delayed a couple of hours. Dad and Hannah arrived in Tampa about 12:45am. With treatment that morning, it made for a very long day. She did have some nausea with the treatment, but the pain seemed diminished as she only needed one dose of morphine. She fell asleep after the treatment, that seems to be her pattern. But she woke up in pretty good spirits about an hour and a half later. We went back to the House and got packed up and ready to go. I checked online and saw the flight was delayed. So, we headed down to the paint shop where Hannah painted another princess and made a necklace. Then it was time to leave for the airport. She stayed awake most of the way home on the plane, watching her cartoons. She did sleep for about an hour on the plane. As I said, we got in quite late. Hannah woke up when we landed. As we were getting off the plane, her nose started bleeding. I think she cut herself while "digging". By the time I got her cleaned up and settled down, we were the last ones off the plane. She stayed awake for the ride home, I'm not sure how. When we got home, she was quite excited to see all her toys. She finally went to sleep about 2:30a.

On Saturday, we went to Great Explorations (it's a "hands on" place). Hannah had a great time making pretend pizzas and playing all the activities they have there. Then we headed down to the Pier for lunch. Hannah likes to see the pelicans and boats. We looked for some dolphins, but didn't see any. Then we went home and made some cookies and played "Belle songs" and danced. She had great energy and spirits all day. Her eating is still a little lacking. We hope that recovers now that she is off the narcotics.

It's soooo good to be home. The Ronald House is a great place for what we have to do, but it's not home. We have 3 weeks to recharge for another cycle on Feb. 27. Hannah will have a clinic visit on Tuesday to check her blood counts. We're hoping she is still holding her own. She only needed one platelet transfusion while we were in NY, and that was a "boost" for the spinal tap. Her red blood has been fairly stable. Hopefully, she won't need any blood products, but we'll check and see.

She really handled the trip and the treatment very well. She's such a tough and sweet and precious and amazing little girl. She constantly amazes me with her spirit. For all that she has endured, she exudes life.

Thank you so much to all of you for your prayers and support. It means so much to know there are so many people lifting her name up in prayer.

Also pray for Emily as she will be starting radiation treatments on Monday.

Thursday, February 2, 2006 4:41 PM CST

Hannah has one more 3F8 treatment left before coming home.

Yesterday and today were pretty similar. She has had some nausea both days. The pain was minimal, only one rescue dose (along with the pre-med dose). She slept a little afterward and then was up and ready to go. We have been very fortunate that besides nausea and pain, both of which are expected, she really hasn't had too many of the side effects. Even the staff at Sloan are impressed with how well she has handled the treatment. Dr. Kramer came by to visit and said she was very pleased with how things were going.

Hannah's counts have remained pretty stable. She has only had the one platelet transfusion (before the spinal tap). We're very glad to see it and hope that they continue to hold.

On Friday, we will go in at 9a for treatment so we can finish in time to get ready to fly home at 7p. It will be a long day but will be worth it when we get home.

Thank you for your continued prayers for Hannah.

Wednesday, February 1, 2006 10:04 AM CST

Praises! Praises! We received word that the spinal fluid from Monday�s spinal tap and Ommaya tap was clean, �No malignant cells found�. Great news indeed!

For the first time, Hannah had some nausea during her 3F8 treatment. We did not give her a morphine dose in the pre-meds, as we have been. That might be a reason, it might not. She needed 2 �rescue� doses of morphine, that seems to be her usual. After the treatment, she went to sleep for awhile. She awoke in the hospital in good spirits, but still a bit groggy. By the time we got back to the House, she was ready to play on the computer. She stayed up for the rest of the evening with good energy. She had a hot dog for dinner and later the House served up some ice cream. Hannah added lots of little marshmallows, and sprinkles too.

If she handles her treatment like she has the past couple of days, and is feeling ok in the evening, we hope to go see the Lion King. The House is providing tickets and transportation. We�ll have to see how the day goes.

Emily and Hannah have become quite the �couple�. Both are always very excited to see each other and have fun playing. It�s so good to see them having fun and laughing.

Please continue your prayers for Hannah, and Emily, and Jacob, and all these brave warriors. They fight and inspire without even knowing it. They are all amazing.

Tuesday, January 31, 2006 7:45 AM CST

Hannah had a good weekend.

Saturday was a beautiful day in NYC. We went to the Manhattan Children�s Museum where they had a floor with an Alice in Wonderland exhibit. She also played a bit in Central Park. Sunday was a little rainy, so she did some pottery painting at the little shop down the street, where she pained Belle and Ariel pieces. Emily and her dad joined us there, Emily likes to paint little ponies. Hannah�s spirits and energy were really good. No fevers, rashes or nausea over the weekend.

Monday started early at the clinic, 8:30a. First, a finger stick for blood counts. Her counts looked pretty good. Both her red blood and platelets were up from Friday. Although she still got a platelet transfusion because they wanted them higher before the spinal tap. The spinal tap started about 10:30a, it�s a fairly short procedure, but with the sedation it takes a bit, all went well. Hannah woke up around noon in pretty good form. She got a little bit of time in the playroom before going back to start the 3F8�s. Again, she handled them very well. The onset of the pain came at the end of the infusion and lasted about 15min. We gave her two �rescue� doses of morphine, that seems to be normal for her. What was not �normal� (compared to last week), was that she woke up about an hour after the treatments, and in a good mood. She actually stayed up the rest of the afternoon and evening playing and socializing at the House. Oh yeah, and she ate some dinner too. She wanted a �hot dog with mustard and a bun�. So, we went out looking for a hot dog guy, they were gone. So, we went to the store and bought some hot dogs and went back to the House to eat. I�m not sure why or how she was so different today, but I was glad to see her up and about and feeling pretty good after such a long day of treatment. She is amazing to me.

We will go up to the clinic about 11:30a today for 3F8�s. We�re on the second shift. So hopefully it will give us some time for her to eat good before going up.

We hope to have the results from the spinal tap today, maybe Wednesday. Please join us in prayer for negative results.

Friday, January 27, 2006 7:07 PM CST

Hannah has finished her first week of 3F8 treatments.

Wednesday night, she ran a little bit of a temp. Not wanting to take any chances of an infection, she made a late night visit to the urgent care center for antibiotics and had blood cultures drawn. Thankfully, she has not had any more temps and nothing has grown in the cultures. We are thinking the temp was from the 3F8's.

Thursday and Friday, she handled the pain well. We cut the pre-med dose of morphine to half and used half doses for rescues. She's stayed in her routine of falling asleep after the infusion and sleeping for several hours. She woke up last night about 2am and stayed up for a few hours before going back to sleep. Next week we are going to try the "late shift" at the hospital. This means she will have a little more time in the morning before going to the hospital and she'll get the 3F8 infusion a couple of hours later. We're hoping that she might sleep through the night after the treatment. She seems to be pretty normal in the mornings after treatment, but pretty grouchy after the treatment (when she's awake). Of course, this is due to the morphine she has received during the treatment. We'll see how the "late shift" works out for her. This is really a time to "tweak" the schedule to see what works best for her.

We did get some concerning news today. Dr. Kramer informed us that there was a "suspicious clump" of cells found in her spinal fluid that was drawn on Tuesday. They were unable to identify the cells. They could be a result of her immune system's reaction to the 3F8's, they could be something else. She will have a spinal tap done on Monday (requiring her to be sedated) to obtain another spinal fluid sample for testing.

Hannah will have a break from the hospital for the weekend. We hope she will feel well enough to try and get out a little and have some fun, maybe Central Park or the Children's Museum. We'll just have to see how she feels. The weather here has been a bit chilly, but really not too bad for NY in January. No snow...yet.

We got to meet a precious little girl, Jenna, that has NB in her brain. She will be getting the 8H9 antibodies too, but she has to have surgery first. Please pray for her and her family as they face this most difficult time.

Emily is doing well. She had her radiation mold and simulation yesterday, without sedation. What a brave little girl.

Please pray for negative results from Monday's spinal tap and that next week's treatment is tolerated well. We appreciate so much the thoughts and prayers from all of you.

Wednesday, January 25, 2006 9:18 PM CST

Hannah had her third 3F8 treatment today.
She is still tolerating the pain of the treatment very well. Yesterday and today we only had to give her one "rescue" dose of morphine. The pain seems to last 10-15 min near the end of the infusion. Then she goes to sleep for a few hours. The morphine is a cumulative effect. We try to use as little as possible but enough to manage the pain. Today she slept till about 5p, woke up in a little bit of a "funk" for about 30 min then came back to more normal. We went to the playroom in the Ronald for a little bit and played with Emily.

Hannah's eating has taken a hit. She eats only a little in the morning and then pretty much nothing after the treatment. She'll drink her apple juice but that's about it. The docs say that is fairly normal during 3F8 treatment. It's a little concerning, but we hope her appetite will recover after treatment.

We are very pleased with how well Hannah is doing with the treatment and pray that it continues for the remainder. Each day we are thankful and relieved, but still a little apprehensive.

As I mentioned, Emily is here in NY. They have started chemo and hope to start radiation on Monday.

Please continue to pray for Hannah and for the pain to be minimal. And pray for Emily and her family as the begin another fight to beat a relapse. And for all the children suffering from this beast.

Monday, January 23, 2006 3:16 PM CST

Hannah has had her first 3F8 treatmnet in NY.
She got into NY on Sunday with Mom and she visited with family. The Ronald House was full, so they stayed at a hotel. Thankfully, we were able to get into the House this afternoon.

The day started pretty early at Sloan. We got back to our room around 10am and got settled in and got all the pre-meds done. The 3F8 infusion started about 1p and lasts about a half-hour. About half way through the infusion, she started having some severe pain. She handled the pain very well with really no crying, lots of groaning and grimmacing. She needed 2 doses of morphine for pain. After the infusion, she went to sleep. We'll have to see how it goes when she wakes up. Overall, the day was alot better than expected. We will repeat this cycle every day for the next 2 weeks.

Her counts are still being watched closely. She has been holding, but low. So, last Thursday she received red blood and platelet transfusions. Today her red blood=10.6, platelets=50. Her ANC is quite high due to the GM-CSF shots she's been getting since Wednesday.

Please continue to pray for Hannah. That she continues to tolerate the pain without side effects.
I'll try to update as much as possible.

Tuesday, January 17, 2006 7:38 AM CST

Hannah's CT was clear! All her scans were clear! Praises!

Her blood counts were a little low on Friday; red blood=8.1, platelets=27, ANC=800. She did not get any transfusions, but she did get 3 days of GCSF shots to boost the ANC. On Monday, her ANC=4400 (from GCSF), her red blood and platelets were the same as on Friday. We hope this is a sign she is stabalizing. She will have another clinic visit on Thursday. She is such a trooper, she didn't even cry today when she got her finger stick.

The endocrinologist appointment went ok. They wanted an x-ray of Hannah's hand to make measurements, then they compare that to the next x-ray to determine growth rate. They will run some specific blood tests as well. Unless there is something unusual, we'll do this every 6 months.

She had a good weekend at Dad's house, just hanging out. Because of the low counts, we didn't want to risk going out too much. But we had fun. She loves to put on a Princess dress and dance to the music of Beauty and the Beast. We picked some oranges from the trees in the backyard. Had pizza for dinner. I really enjoyed the relaxing weekend with her.

The schedule is still to start 3F8 treatment in NY on Monday, Jan. 23rd. Starting tomorrow, she will be getting daily shots of GM-CSF. This is very similar to GCSF, to boost white cell counts during 3F8 treatment. We will head up on Sunday and start 3F8 first thing on Monday morning. We are expecting long and difficult days, and pray that we can find the right med mixture to make it as tolerable as possible. There are so many unkowns as to how she will react to the treatment, each child is different, but they all experience some pain.

Please pray for our friend Emily, they have confirmed her relapse. She endured a 5-hour surgery on Friday to remove most of the growth. They will be returning to Florida to start chemo & radiation.Emily's site

Wednesday, January 11, 2006 6:50 AM CST

Hannah had her CT on Tuesday.
There was a scheduling mixup on Monday. We had to re-schedule. Then anesthesia was running 2hrs behind on Tuesday. So, instead of sedation with Propofal, which is normally what is used. Since the CT was only 10min, we tried using Versed, which calms but isn't full sedation. Hannah did great and stayed still so the scan was completed. We hope to get the results today. Speaking of results, some great news from NY. We received word that the PET and bone marrow results were clear! Praises!!

Her blood counts looked OK on Tuesday. Her red blood=8.9, platelets=45, and ANC=1200. So she didn't need any transfusions. They are down from last week but don't seem to be falling as fast. We will get her checked again on Friday and that should give us a good idea if she's starting to level off. We hope so.

Hannah has an appointment with an endocrinologist today. We just want to make sure that her hormone levels are normal. Sometimes, all the treatment can affect these levels. It's just a precaution, or paranoia.

Overall, Hannah has been doing pretty well. Good energy and spirits. Her eating is so-so, but maintaining her weight. Her hair is continuing to come in...slowly, but it's growing. She has gotten the potty thing down pretty good too (except when she's sleeping).

Thank you so much for all the prayers. It's a great relief to have clear scans. We were very concerned about the MRI. Please keep lifting her up in prayer, as she still has a very tough road ahead with the 3F8 treatments.

Also, please pray for Emily. She will be getting a biopsy on Friday to determine if she has relapsed. Emily's site

Jacob is doing pretty well at home, but still needs your prayers too. Jacob's site

Saturday, January 7, 2006 10:29 AM CST

Hannah is Home!
She and Mom arrived in Tampa about 8p on Friday night. Hannah looked good and still had energy to burn.

Hannah did have a PET scan Friday morning. That went pretty well. This type of scan will show if there is active disease in her body. We hope to have results early next week. We did get excellent news regarding her MRI- no new disease! And the spot that we were concerened about has contracted. So that's great news. We are still waiting for bone marrow results as well. On Monday, she will have a CT here in Tampa. That will conclude her testing.

Her platelet counts have continued to drop. She did get a platelet transfusion on Wednesday. And we had to give her a couple days of GCSF shots to boost her white blood cells (ANC). Dr. Kramer said that the patients on this dosage cycle have had issues with all blood counts and that they should start to improve in the next 2-3 weeks. She also dropped the platelet transfusion level from 50 to 20. So, hopefully Hannah's body will be able to keep above that level so she won't need as many transfusions.

Her 3F8 treatment in NY has been pushed back to Jan. 23rd.
3F8's are monoclonal antibodies, developed at Sloan specifically for neuroblastoma. Sloan has been using them for about 10 years and they definetly help some children. It is a "targeted" therapy. There are supposedly no adverse effects on healthy tissues. These 3F8 antibodies are attracted to NB cells and the 3F8 antibodies signal the bodies own immune system to destroy the NB cells once the 3F8's attach to the NB cells (because the 3F8 antibodies are made from mice, the body sees them as foreign). In theory, this "trains" the immune system to identify NB cells and destroy them. They are painful treatments, because of nerve cell reactions. Hannah will have to be given morphine for pain, every day during the treatments. Many children develop a rash also. The treatments are given as outpatient, but with all the pre-meds, it's an all day affair. The infusion of the 3F8's themselves takes about an hour and a half. The cycles are M-F for 2 weeks, then 3 weeks off, then repeat treatment. Unless she develops HAMA, which is a marker that her body has developed antibodies against the 3F8's and is destroying the 3F8's before they get to the NB cells. If she goes HAMA positive, we have to wait for her to go HAMA negative before doing another cycle. Sloan wants to do at least 4 cycles of 3F8's. Each child is different and we have no idea how her body will respond to this treatment. We do know that they are going to be difficult treatments for her, and for us, as we have to watch our Princess be in pain.

We pray this treatment, in combination with the 8H9 treatment, will help keep Hannah from relapsing again, that is the purpose of all of this. Please pray with us that the rest of the test results come back negative for disease. And that we will all have the strength to get through this next phase of treatment.

I have posted some new pics in December 05 album. Click on the link for pics above the journal.

Wednesday, January 4, 2006 4:47 PM CST

Hannah is in NY with Mom.
This morning she had the bone marrow aspirations and the brain/spine MRI. During the CT, Hannah woke up from the sedation, so the CT could not be finished. Sloan could not get another CT scheduled till next Wednesday. So, we called St. Joe's and have a CT scheduled for Monday. We were scheduled to start a "pre-med" on Wednesday, but Sloan would not start it without having all the test results. In addition, Sloan is backed up with 3F8 patients. So...as it looks right now, we will have to push back the start of 3F8 treatment to Jan. 23rd.

All of this made for a pretty frustrating day for us. Hannah was a little foul for about an hour after waking up, but then she settled down. She really handles all this amazingly well.

Thursday is an "open" day with no tests scheduled. Friday she will have a PET scan in the morning and fly back to FL in the evening.

We are praying very hard for a clean MRI and bone marrow. We probably won't have those results for a day or two. So please pray with us for good results.

Monday, January 2, 2006 4:06 PM CST

Happy New Year 2006 to All!

We spent most of Saturday, New Years Eve, at St. Joe's, getting platelet and red blood transfusions. We got to the hospital about 10am and left about 6pm. There is nothing quick about hospitals. But we hope that this will have her "juiced up" for her trip to NY on Tuesday. She has also had 3 days of GCSF shots to "boost" her white blood cell count. We will take her into the clinic on Tuesday to check her blood count before getting on the plane to NY.

After getting home from the hospital, we ate some steak for dinner. Then we made some brownies and Hannah enjoyed licking the spoon. So, it was a pretty quiet New Year's Eve. On Sunday, we hung around Dad's house, and took down the Christmas tree. Hannah was a great helper, she took down the ornaments and helped put things away for next year.

As is stands now, the plan is for Hannah and her Mom to fly to NY on Tuesday; MRI, CT & bone marrow aspirations on Wednesday, off on Thursday, PET and Echo on Friday then come back to Tampa Friday night. We will return to NY on Jan. 15th for 3F8 antibody treatment.

I have been so touched by the thoughtfulness of others during this holiday season. I am so blessed to have such an amazing child and the suppport of such gracious friends. I know this year is going to have many challenges, and it is a great comfort to know that so many have Hannah in their thoughts and prayers.

Please pray for clean scans and safe travels for Hannah.
May 2006 bring peace and joy for you and your family.

Friday, December 30, 2005 1:55 PM CST

Hannah had blood counts this morning.
The results weren't what we were hoping. Her red blood=7.2, her platelets=35, her ANC=600, these are all on the low side. We had hoped her red blood was leveling off, but it has continued to slide. We'll take her into the hospital Saturday morning to get "juiced up" with red blood and platelets. We'll start her on GCSF shots tonite for 3 days to pump up her ANC. We are concerned that her counts continue to decline, not knowing if it is strictly treatment related or if it means there is disease progression or exactly what's going on. We'll get more counts on Tuesday before she flys to NY for scans.

Please, start praying for clean scans and marrow results. We need to start 2006 off clean!

Happy New Year to all!

Tuesday, December 27, 2005 1:30 PM CST

We hope everyone had a Merry Christmas!
Santa sure was good to Hannah. Of course, she deserves every bit of it. She wanted a dancing Dora doll and a cowgirl outfit, Santa brought both and a whole lot more. We went to GrandmaD & Pappy's house on Christmas Eve night. She awoke to a room full of presents and family. Thanks again to everyone who sent her a present.

She had to go in to the hospital lab on Saturday for a blood check. Her red blood=8.3, platelets=48. We thought it best to get her transfused before the holiday, so she spent some time Christmas Eve getting a platelet transfusion.

We came back from Gainesville on Monday night, GrandmaD came with us to spend a couple of days with Hannah in Tampa. We went to the clinic on Tuesday morning. Her red blood=8.3, platlets=67. So NO transfusions, Yeah! We did tap the Ommaya port for spinal fluid. After that, we went to the park for a little while and played on the swings.

Her red blood seems to be stabalizing. We'll have to see about her platelets. We'll go back on Friday to have her blood counts checked again.

Her energy and spirits have been quite high. It's good to see and we hope it continues. She's been doing really good on the potty thing too. (Santa even brought her some Princess panties!)

I would like to express my sincere gratitude for all who have kept Hannah in their thoughts and prayers. I also give thanks for ALL the techs, nurses and doctors at St. Joe's and Shands and Sloan. She has received excellent care at these facilities as she touches the hearts of everyone she meets. She is an amazing child and I'm so grateful for every moment with her. Please continue to pray for her and all the children who are fighting to beat this monster.

Thursday, December 22, 2005 8:57 AM CST

Hannah had a clinic visit on Wednesday.
Her blood counts weren't so good; Red blood=8.8, ANC=770, platelets=27. She received a platelet transfusion. We are a little concerned her red blood has dropped, along with her ANC (below 500 is very low). So, we will give her shots of GCSF for 3 days, to try and boost the ANC. The red blood we'll have to watch and see if she will need to be transfused. Of course, with the holiday weekend coming up, the clinic is closed on Friday and Monday. So, we'll probably make a trip in to the hospital lab to have her counts checked.

She is very excited about Christmas and Santa. We've been singing Frosty and Rudolph. She knows that you have to wait for "Christmastime" to open presents. I'm sure she will have lots of presents to open. Thank you to all who have sent her something.

We wish all of you a very Merry Christmas. Enjoy the time with family and friends, for time together is a most precious gift.

Wednesday, December 14, 2005 4:28 PM CST

Hannah had a clinic visit today.
Her blood counts looked good, but her platelets were low (46). So she got a platelet transfusion. On her Ommaya tap, the doc missed the first time and had to re-stick to get clear spinal fluid. She is still on a few meds from the 8H9 treatment; SSKI, Decadron, Zantac, Cytomel. Those will stop next Tuesday. She will have another clinic visit next week for blood/spinal draws. We hope her marrow will start kicking out some platelets soon so she doesn't have to have the transfusions.

It looks like we will not be able to get her scans done in Tampa, as we had hoped. We are trying to get them scheduled in NY for the first week of January. Then she will come home for about a week. Then back to NY on the 15th to start 3F8 antibodies. Scheduling is always difficult, the holidays don't make it easier. Hopefully, we can get it all done in 3 days in NY. We'll see what happens.

Thank you all for your continued prayers.

Sunday, December 11, 2005 8:43 PM CST

Hannah is HOME!
After getting a platelet transfusion on Thursday, we made it back to the House just in time to grab our bags and catch our car to the airport. We arrived in Tampa about 8pm. Hannah did real well on the flight back. Thank goodness for the TV's on JetBlue.

Today we decorated the Christmas tree at Dad's house and finished putting up lights. She was a great helper with the ornaments. In the afternoon, we went to a function hosted by the Children's Cancer Center and the Tampa Bay Lightning. It was a great event. Each hockey player "adopted" a child. Our player was #8 Martin Cibak and he bought Hannah a stuffed pony and a Dora dress up doll and some fairy dolls too. She loved all of her presents, all of the children loved their presents. We got to sit down and have some dinner too. It was a great event and very generous of the players. Thanks again to the Children's Cancer Center and the Lightning players. I'll get some pics up soon.

Hannah will have a clinic visit on Wednesday for blood/spinal draws. We'll see what her platelet count is doing then. Due to the 8H9 treatment and her Ommaya, Dr. Kramer wants to keep the platelets above 50. Her sinus infection is completly clear, probably for the last week or so. Her eating is really good, she is still on decadron, which is a steroid and stimulates appetite. Her energy and disposition have been good as well.

Thank you for your continued prayers for Hannah.

Thursday, December 8, 2005 12:06 AM CST

Hannah was discharged Wednesday about 11am.
She really handled the treatment well and was running around pretty good in the morning. All the nurses love her and she hammed it up while saying "Goodbye".

Thanks to Mom and Ronald McDonald, we got tickets to the Broadway show of "Beauty and the Beast". They were great seats, only 5 rows from the stage. Hannah absolutely loved it. It was a great production that even Dad enjoyed.

We also got to meet Mark Dungan and his daughter, Sydney. Mark is the founder of Lunch for Life. I really enjoyed talking with him about different treatments and how we really need to raise awareness for pediatric cancer. If you haven't done so already, please visit www.lunchforlife.org and make a donation to help fund research for neuroblastoma.

Today we had a clinic visit for blood/spinal draws. Her blood counts looked pretty good, except for her platelets=54. So, we are currently getting a platelet transfusion. Then we'll head back to the House and grab our bags. We fly back to Tampa tonite! It'll be nice to be back in sunny Florida, it's cold up here.

The next "phase" of Hannah's treatment will be 3F8 antibodies. These are only available at Sloan, they were developed at Sloan exclusively for neuroblastoma and they've been using them almost 10 years. She will have to have a complete workup; MRI, CT, PET, echocardiogram, etc. before starting 3F8's on January 16th. She will have to come back to NY before then just for a bone marrow aspiration that has to be done at Sloan. We hope to have all the other scans done in Tampa. The logistics of all this is just crazy. Anyway, there will be much more to come on 3F8's.

Thank you for your continued prayers for Hannah.
Next update -- from home!

Thursday, December 8, 2005 12:06 AM CST

Tuesday, December 6, 2005 3:31 PM CST

Hannah got her "treatment" injection today and all went well.
After getting admitted yesterday, she had a pretty good night. We played bingo in the playroom, she won a toy dog and a Batman (both were her choices). She had a pretty good nite's sleep. She did wake up @ 4am and stayed up a couple of hours then went back to sleep till about 10a.

We spent the morning playing around. She had very good energy. With the exception of one meltdown, it was a good morning. All the parties; nurses, Dr. Kramer, radiation safety, showed up a bit after 2p for the injection. The injection was infused alot slower than before and that seemed to be good for Hannah. She had very minor nausea and afterwards she took a little bit of a nap. However, on one of the spinal draws, the needle came out of the Ommaya and we had to "re-stick" her head. She was napping at the time and barely flinched. Amazingly, she slept right through it! She woke up just a bit ago and is in an ok mood and is resting comfortably watching Tarzan. We hope to have a quiet nite and be discharged in the morning.

There is an organization called Lunch for Life, that I have mentioned before, there are links on this website. It is a very worthy charity that was founded by a father of a little girl with neuroblastoma, Sydney Dungan. ALL of the monies go directly to research. Please visit the website, click here. Your donation can be made in Hannah's name as well.

Thank you for your continued prayers for Hannah

Monday, December 5, 2005 6:40 PM CST

Hannah had a good weekend in NYC.
She got to experience her first snowfall and had a blast. I think they expect more snow here this week. She has great energy and her appetite has picked up, due to the steroid.

Her platelet count was low on Friday, 53. So she had to come into the clinic for a transfusion.

Today, we came into the clinic around 3p, and waited and waited. We got into her room around 6p. We hope for a quiet nite. Tomorrow, she should get her treatment injection in early afternoon. She'll spend Tuesday night inpatient as well and hopefully be discharged Wednesday morning.

Please pray that the treatment goes without any complications and is effective.

Some good news, Jacob is home. Prayers do work.

Thursday, December 1, 2005 8:40 AM CST

Hannah had her "test" dose injection on Tuesday.
The procedure went smoothly. However, afterwards she was very irritable and aggresive. We think that may be due to the dilaudid (pain med) she received or the antibodies themselves, or a combination of both. She was discharged Wednesday morning and went back to the House. Her mom said she was doing "much better" this morning. Which is good to hear. Her cough has cleared up some, they have given her some hi dose antibiotics. Today they will "tap" the Ommaya port to get a sample of spinal fluid and the will get some blood as well. There isn't much scheduled till Monday when she will be admitted for the "treatment" dose on Tuesday.

Please continue to pray for Hannah, and also for Jacob who is back in the hospital fighting an infection.

Monday, November 28, 2005 2:48 PM CST

Hannah is in New York City.
Hannah and her mom flew up this morning. She will be admitted today and is scheduled for her test dose injection on Tuesday. We pray that all will go smoothly.

Her platelets were still low,53, on Saturday. The NY docs wanted her transfused before we came up, so we had to go into St. Joe's on Sunday for a platelet transfusion. Her sinus infection had not improved either. So, they changed the antibiotic she was on and she also got some IV antibiotics while we were in St. Joe's. That took most of the day on Sunday. She seems to be slightly improved today.

A good sign: her hair is starting to grow back! She has a "5 o'clock" shadow on her head. It's not much, but is definetly coming back. It looks like her hair will be dark again.

Please continue to pray for Hannah: that this round of treatment will go smoothly and be effective against her disease. Also, Jacob is back in the hospital, please pray for his recovery so he can go back home.

Wednesday, November 23, 2005 9:06 AM CST

Hannah had her MRI on Monday.
Her cough was a little worse on Monday morning. So, we took her in to the clinic about 10:30a to see Dr. Wynn before sedation. She had some "crackles" in her lungs, but he thought she would be fine. When we got into MRI around 12:30p, the anesthesiologist had some concerns about whether she would be able to make it throught the 2hr scan without coughing and moving, even under sedation. He suggested re-scheduling the scan, with our timeframe and NY trip, that would have been a major setback. Because there really was minimal risk to Hannah, we decided to give it a try. Thankfully, she made it through the whole scan. She actually seemed to be breathing better after the scan. She woke up really well. After recovery, we got out of the hospital about 4p. A long day for one MRI.

After Hannah was done, I went by to visit Jacob. Amazingly, his mom & dad were getting ready to take him home!!! He still has alot to get through, but I know being home is the best place to be. Praises!

I spoke with Dr. Wynn on Tuesday regarding the results from the MRI. Basically, the news is good...no new disease was noted and the mysterious "spot" was not larger. However, there is a differing opinion than that from Sloan. St. Joes is not calling it a lesion (meaning disease), they think it is artifact or possibly a vessel. So, that's not really a help. I will go have a sit down with Dr. Wynn next week and look at the scans, will probably have to do the same up in NY. It's another reminder that medicine is not nearly the exact science we would all like it to be. It really doesn't help to get conflicting interpretations.

Hannah will be with her mom's family for Thanksgiving with a trip to see her Great-Grandma & Grandpa. I'm sure she will have lots of fun.

On Monday, Hannah and Mom fly to NY at 8a. Hannah will be admitted at Sloan in the afternoon. The test dose injection is scheduled for Tuesday, usually between 12p-2p. She will stay in the hospital overnight for observation and hopefully be discharged on Wednesday.

We wish everyone a Happy Thanksgiving! We all have so much to be thankful for in this great country of ours. We are very, very thankful that Hannah is doing well and that Jacob can be home for turkey day. Enjoy the time with family and God Bless.

Monday, November 21, 2005 7:08 AM CST

Hannah had a great weekend at GrandmaD's!
We went up to visit GrandmaD and PappyD for an "early" Thanksgiving. Hannah was very excited to see Baby & Trouble (PappyD's little dogs). PappyD is doing much better now, and that we are definetly thankful for. We fed Misty the horse some carrots. We had a relaxing weekend with family and food. On Sunday, we visited GrandmaD's church where so many people have been praying for Hannah.

Today, Hannah will have an MRI of her brain/spine and will have blood/spinal draws. We hope the MRI will be clean. There is some concern due to the last scan, done at MSKCC, that noted a 4 x 2 mm spot in her left posterior temporal lobe. This spot was not noted by St. Joe's on her September scan. We hope this MRI will definitively tell us where we're at.

Please pray that the sedation goes smoothly and that the scans come back totally clean. Also, please pray for Jacob as he is still in the hospital, but improved.

Thursday, November 17, 2005 8:15 AM CST

Hannah had a clinic visit on Wednesday.
The blood/spinal draws went pretty smoothly. She actually does better with the Ommaya access than with the blood "stick". I think it's because she can't really see the needle when we access her Ommaya. Her blood counts all came back normal. Her ANC=1334, down a little, because she has a sinus infection. She had to have sinus and chest xrays done to confirm before the docs would write a scrip for antibiotics. She has had a cough for the past couple of weeks and it was not going away. So, I'm glad we pushed to get her checked out. We just hope this won't interfere with her next round of treatment in NY. Which, is scheduled for the Tuesday after Thanksgiving. So, we have to confirm some logistical details and arrangements. We hope the treatment doesn't get delayed.

Her eating is somewhat decreased after coming off the decadron. But she isn't doing to badly. Her weight is still good at 32lbs. Her energy has been pretty good. She was a little low on Wednesday, maybe because of the infection. Hopefully, the antibiotics will do their thing.

Some GREAT news about Jacob. He is out of the ICU and back on the cancer floor. So, he has improved but still has a long way to go. Please continue to pray, it's working! Jacob's site

Monday, November 14, 2005 3:18 PM CST

Hannah is doing great and had a fun weekend.
On Saturday, we went to the Badge Bowl, a fundraising event for the local Children's Cancer Center, that's put on by the Tampa Police Dept. and Tampa Fire Dept. They had lots of activities for the kids. Hannah liked the dunk tank and the bouncey house. Hannah got to ride in a real fire truck around the field. The Police and Fire departments play a game of football for bragging rights. We got to be on the field during the introductions of the chiefs and the mayor. They had a helicopter fly in with the football and handed it to a little boy, James, who was the "poster boy". He also has neuroblastoma. In all, it was a great event and Hannah had a blast. Thanks to all who attended to support childhood cancer. (I'll post some pics when I get a chance.)

Hannah did ok at the dentist. No cavities to report. She'll go back in 6 months. She has a clinic visit on Wednesday for blood and spinal draws and that's it for the week. She will have an MRI on Monday, 21st. She continues to have good energy and spunk.

Please continue to pray for Hannah and for Jacob. He is slightly improved but still in the ICU.

Wednesday, November 9, 2005 3:36 PM CST

Hannah had a clinic visit today.
Her blood counts were good: Red blood=12.4, Platelet=264, ANC=3000. Unfortunately, she had to be stuck twice to get enough blood. She did OK with the Ommaya access. She will have another clinic visit next week. She has a dentist appointment tomorrow, for cleaning. No one likes dentists, but with what she has gone through, it shouldn't be that bad.

She continues to do very well. Her energy and appetite are good. She has a little bit of a cough, but no fever or runny nose. We'll watch the cough to make sure it doesn't turn into something more. She is still on a few meds but 3 of them will stop tomorrow. Then she will only be on bactrim. We will all be glad for the decrease in having to take "med meds".

She had a nice weekend at dad's. We went to the park on Saturday. We also went to buy a tricycle, but she was so overwhelmed by all the other toys. So she got a Snow White polly pocket toy instead. She seemed very happy with her choice. On Sunday, we visited with Steven and Ms. Gina. With pizza for dinner and a "mock" birthday party for Steven's stuffed puppy, just for fun.

I ask you all to again please pray for our dear friend, Jacob. He is having some severe complications following his last round of chemo. He is a fighter and needs our support in prayer. Jacob's site

Friday, November 4, 2005 8:21 AM CST

Hannah had a clinic visit on Thursday.
She was ok going into the clinic. We decided not to access her port just for the blood draw. We had to hold her down to do a butterfly stick in her arm. She was NOT happy about it. The tech did a great job of getting a vein on the first stick and being quick. Nonetheless, it was traumatizing for all. As usual, she was back smiling shortly afterwards. Then we had to access the Ommaya, that actually was much easier than the arm stick. Dr. Wynn pulled the spinal fluid to send to Sloan. Her blood counts were very good: Red blood=12.9, platelets=346, ANC=3170. All in normal ranges. Her chemistry levels were also all normal.

I also spoke with Dr. Wynn regarding Hannah's last MRI scan at Sloan. According to the radiologist at Sloan, there is still a very small spot (4 X 2 mm) in her left posterior temporal lobe. This spot was not noted on her September scan done in Tampa, although Sloan says it was there at that time. So, it's a bit confusing as to whether the spot was there before, and not noted, or is something trying to come back, or if it's just artifact. She will have another MRI in November which we will compare to the previous studies which will hopefully give us more info.

She continues to do well with good energy and tempermant. She is eating pretty well, especially the Halloween candy! The ladies in the clinic gave her bags of candy.

Thank you for your continued prayers.

Tuesday, November 1, 2005 2:45 PM CST

Hannah was a fairy for Halloween!
We met up with her best friend, Eli, and went trick or treating in South Tampa! Eli was Bob the Builder. They had fun getting loads of candy. Hannah wasn't too scared by the other Treaters or the decorations. One house had a dachsund dressed up as a hot dog. Pretty funny! I've posted some new pics, from last night and some from NYC. So, click on the link above the journal.

Hannah is doing really well. Her spirits are good. She is talking up a storm. It's so good to see her having some fun.

She has a clinic visit on Thursday for spinal/blood draws. But that should be it for the week.

Thank you all for your continued prayers.

Monday, October 31, 2005 7:15 AM CST

Hannah's HOME!
On Saturday, we went in to the clinic for a quick spinal and blood draw. Dr. Kramer came in on a Saturday, just for Hannah. We still had a little problem with her mediport, but were able to get enough blood and remove the access needle. We went back to the House where mom had cleaned up the room for our departure, took a little nap then off to the airport. Our flight left JFK at 7pm and we arrived in Tampa at 10pm. Hannah was is high spirits. She really loves flying, (I'm sure the TV's on the plane have something to do with that). She was so good on the plane, even the flight attendants remarked about it and gave her some wings.

On Sunday, she went with mom to a Fall Festival put on by the Children's Cancer Center. They do a wonderful job of putting together fun things for the kids.

Tonite, we will go out for Halloween. I believe she will be a fairy or a princess. We'll have to see what the final decision will be. She seems glad to be home, we all are.

She will have a clinic visit later in the week for a spinal and blood draw. We'll do that once a week. She also has an MRI scheduled for 11/21. Other than that, we hope to be as hospital free as possible until our next trip to NY, after Thanksgiving.

Please continue to pray for Hannah and for PappyD. I went to visit him yesterday in the hospital, he's improving but still has a ways to go.

PS-I'll try to post some pics in the next couple of days.

Thursday, October 27, 2005 7:20 PM CDT

Hannah had her treatment dose injection today around 2:30pm.
We accessed her Ommaya. During the injection, she had really bad vomiting accompanied by a major bowel movement. She had eaten a big lunch, so there was alot to come up. It was a bad mess and we ended up putting her in the shower to clean her up. Afterwards, around 4pm, she fell asleep and slept till about 7pm. She woke up hungry and had some pizza. As of this time, she has not had any more nausea. As usual, she has recovered quickly. This evening she was pretty much back to her normal self. We even made a visit to the playroom.

We have had some problems with her mediport, being able to draw blood through it. It has gotten progressively worse. Today it was pretty much impossible to draw blood through. They think there might be a clot on the end of the catheter so they put a med in the line that should help dissolve it.

We will have another spinal draw tomorrow. We should be discharged shortly afterwards. Then we will head back to the House. It looks like we will be able to make it back on Saturday.

Please continue to pray for Hannah. Also, we learned that CJ, the girl that was in New York Presbyterian with brain tumor, is back in the hospital and needs your prayers as well.

Thursday, October 27, 2005 6:33 AM CDT

Hannah is scheduled to get the treatment injection today.
She has been doing really well. Her spirits are good. She is eating very well. She still prefers hot dogs and pizza. We try to get some variety, with mixed results. The increased appetite is probably due to the steroid she has been taking, but it's good to see her eating so much. She actually has gained a little weight to 31lbs.

On Tuesday, it was a rainy day in NYC. So we hung out at the House and did puzzles and watched some videos. They had a fun little Fall Festival at the House that evening. She really enjoyed the little games and activities.

On Wednesday, we went into the clinic after her nap, around 3pm, to be admitted. They wanted to collect some urine for a test. We tried twice to do so last week, but had some problems. It's really a very uncomfortable process. We have to physically put a "bag" on her privates for 4 hours. The bags usually leak. And it's painful to remove. She really doesn't like it, neither do we. But it's better than putting in a catheter. We hope this time we got enough urine. We got into our room around 6:30pm. They put us in a private room. A precaution due to the radioactive nature of the treatment. So we got settled in and got her some dinner, noodles, fruit, ice cream.

Today, the injection is scheduled for early afternoon. So we will wait some more. All the waiting leads to apprehension. But we have talked with some other parents and it seems that the kids tolerate the treatment pretty well. We pray for the same for Hannah.

Please continue your prayers for Hannah; that there are NO adverse effects and that the antibodies do their job. Also, Jacob has had some setbacks, so please pray for him and his family.

Monday, October 24, 2005 9:34 PM CDT

Hannah has been doing very well since her "test" dose injection.
On Friday, she had the special imaging study done to "see" the antibodies. That went well and we were discharged about 5pm and headed back to the House. On the way, we had to stop for pizza and noodles. Hannah's appetite has been pretty good, for pizza, hot dogs, and noodles and apple juice.

On Saturday, we went to the Big Apple Circus (we got tickets from Sloan). We rode in a police bus with other children from the House. Hannah really enjoyed the horse and the puppies and the clowns. Of course there were hot dogs and popcorn too. It was nice to get her out a little and see her smile. Afterwards, we had to stop at Sloan and have a spinal and blood draw. Then back to the House.

On Sunday, we just hung around the House most of the day. Some of dad's friends from Naples, who were escaping Wilma, came by for a visit and dinner.

On Monday, we went to Toys R Us in Times Square. We rode the ferris wheel and looked at all the toys. Mom did get back to NY, just a little later than planned.

Tuesday is a "hospital free" day. We hope to do something fun, but it will probably have to be at the House since the weather is supposed to be kinda crappy (Wilma again).

Wednesday we will go in for labs and to be admitted. Her treatment injection is scheduled for Thursday. If all goes according to plan, we will come back home to Tampa on Saturday. I will post some pics when we get back home.

Please continue your prayers for Hannah and for PappyD, he is still in the hospital.

Thursday, October 20, 2005 8:25 PM CDT

Hannah had her "test dose" injection today and all went well.
We got to the clinic about 1pm, and waited, and waited for a room. We finally got into our room about 6:30pm. It was a long day of waiting but we had some fun in the playroom with games and puzzles. A volunteer came and made all the kids balloons. Hannah wanted a puppy (purple to match her outfit). Most of the boys got swords and there was a tremendous "swordfight". It was fun to watch. They really do try to have fun activities to pass the time.

Hannah slept well through the night. Waking up only once for a bottle of apple juice. She stayed in bed all day watching Princess videos and playing with her Princess puzzles. It was another day of waiting. Dr. Kramer came by and went over what was going to happen. About 2:30pm she came back with some helpers. They accessed the Ommaya, pulled some spinal fluid and injected the antibodies. We had to leave the Ommaya accessed (so there was a little tubie sticking out the top of her head) for subsequent spinal draws, which meant alot of tape on her head to keep the needle in place. They drew spinal fluid about 6 times throughout the rest of the day. On the last one, about 8:30p, we were able to pull the access so she didn't have to sleep with it in. She really handled it all very well. She watched her Princess and Cinderella videos through most of it (of course she also had some pre-meds on board to help keep her calm). So, it was pretty uneventful, which is a good thing. No noticeable adverse reactions, no nausea or headaches or fever. Tomorrow, around 2pm, we'll have the special imaging scan to "see" what the antibodies are doing along with another spinal draw. After that, we hope to be discharged and go back to the "House". Next week, we'll repeat this whole process but with a much larger dose of the antibodies.

Of course, we all know Wilma is probably heading for Florida. It seems that we are always in a hospital somewhere when one is headed that way. I guess at least this time, we are well out of her path being in NY. Hannah's mom is back home in Tampa and we hope she'll be able to get back to NY.

Thank you all for your prayers for our little Princess. Please don't let up, she still needs them.

I'd also like to ask you to pray for PappyD. He had surgery today to relieve some blood clots in his leg and chest. Please pray the surgery works and eliminates the clots.

Wednesday, October 19, 2005 7:26 AM CDT

Hannah had her MRI on Tuesday.
We got to Sloan about 9am. After the normal ritual, seeing the nurse, going to IV room, she got into the MRI about 11am. The MRI took about an hour and a half. Then they took samples of her bone marrow, in 4 spots in her pelvis. She woke up from sedation pretty well. It was then that we noticed a big tube with a bag coming out of her. They needed a urine collection, for 4 hours! Noboday had told us about that earlier. Well, after not having anything to eat or drink for over 12 hours, she didn't really have any urine. So, no pee-pee. I imagine she'll have to go through that again.

We expect to be admitted sometime today. The "test" injection is scheduled for tomorrow morning with spinal fluid draws throughout the day. On Friday, she will have a special imaging test to show how the antibodies travel around in her CNS. If all goes well, she should be discharged on Friday.

She is such an amazing girl. How she tolerates all the "stuff" that we do to her is beyond me. It's not pleasant at the time, but she puts it behind her quickly. She will need alot of strength to get through the next week or so, we will be doing lots of "stuff" to her.

Please continue to pray for Hannah; for her strength, that there are no adverse reactions to the antibodies. There are so many other children that fight this beast. They need your prayers too.

Monday, October 17, 2005 4:53 PM CDT

Hannah went to Central Park today.
The weather in New York has dramatically improved from last week. Today was a little cool, but very sunny. A good day for the park. We fed some ducks and birds at a pond. We rode the carousel, twice. And just enjoyed being outside. Yesterday, she visited some of Mom's family on Long Island.

Her eating is pretty good. I think she's become hooked on hot dogs again, because there's a vendor on every corner. Her energy is also pretty good, except that she does tire easily. Her spirit seems high, which is so good to see. It's amazing how well she adapts to whatever, wherever.

On Tuesday, she will have an MRI of her brain & spine. They will also take samples from her bone marrow to check for NB. She will also have the stitches removed from the incision from the Ommaya procedure.

She's still on schedule for her "test" dose of the antibodies on Thursday. She will be inpatient for a couple of days for observation. They will draw spinal fluid many times after the injection as well as do some special imaging studies to see the flow of the antibodies.

Please continue your prayers for Hannah; that this MRI is "clean" and that the injection process is smooth and "event free", but effective. Thank you all so much for your thoughts and prayers. And if anyone wishes to send a card or anything, the address for the Ronald McDonald House is on this website, room 704.

Friday, October 14, 2005 10:49 AM CDT

Hannah is still in NY, and it's a very wet NY!
She had a "light" beginning of the week. Nothing scheduled on Mon, Tues, or Wed. So, she and Mom had some quality time and GrandmaBuhrke came up on Wednesday. She got to visit the Toys 'R Us in Times Square, again, with Mom and cousin Adam (thanks for the driving).

On Thursday, she had a clinic visit. Her blood counts looked pretty good: Red Blood=10.5, Platelets=264, and ANC=1200. We were pleased with those. After clinic, she had a "CSF Flow" study. This is a test using an isotope to check the Ommaya catheter and her circulation of the CNS and takes about 20 minutes. We had asked that she be sedated, however, Sloan didn't think it was needed. But Mom and Grandma helped keep Hannah still so the study could get done. She had another study done in the afternoon and a final one today.

There has been some frustration with the scheduling of needed tests before her treatment can begin. We have felt that some of the tests could have been scheduled sooner. However, it is always a battle for coordination when you have to get time on the machine, time for sedation (anesthesia), time for recovery and get them together. Anyway, as it stands now, she will have another baseline brain/spine MRI on Tuesday as well as bone marrow aspirations. She is currently scheduled to get her "test" dose injection on Thursday. Which means she'll be in the hospital on Thursday & Friday nights. Hopefully, that will be it. On the following Thursday, she will receive the "treatment" dose, and be in the hospital for a couple of days, for observation. We hope to have her home by Nov. 1, we'll see what happens.

She has been eating pretty well and acting pretty normal with pretty good energy, but she does seem to get tired earlier. Sometimes, she actually tells us she's ready for bed at 8p or 8:30p (that's not usually like her). And she has been sleeping mostly through the nite. That's ok, she needs the rest for what lies ahead.

I will be heading back to NY on Sunday. It has been so difficult to be this far away from her. It will be great to give her a big hug and a "smoochie".

Please continue to pray for Hannah, that the upcoming antibody treatment is tolerated well and that it's effective against her disease.

PS--GO visit your local VOLVO dealer by Sunday. They are donating $20 to Alex's Lemonade Stand for every test drive. You don't have to be in the market for a new car, just GO! There's a link just above the journal for more info.

Sunday, October 9, 2005 3:50 PM CDT

Hannah is out of the hospital and back at the "House".

She came out of the surgery really well. She was talking alot and showed concern for the other patients in the recovery room. It was touching. Of course, the nurses were all over her showing her attention. We got into our ICU room around 5pm. She drank about 24oz of apple juice, and ate a few goldfish. We watched Sleeping Beauty and she fell asleep before the credits were done. We also watched it again when she woke up at 4am. But she went back to sleep after that viewing as well. She woke up in good spirits on Saturday. Dr. Souweidane came by for a visit and was pleased with how she was doing. Then we watched her "new" Cinderella movie (it just came out on DVD). So dad is "up" on the Princess movies. They wanted a CT before we left and we had to wait till about 3p to get that done. The results showed good placement of the catheter. We were discharged around 5p and headed back to Ronald McDonald.

While we were in ICU, we met Tracey and Michael, the parents of a young lady named Crystal Jane who was having another brain surgery to relieve seizures. Please add Crystal Jane and her family to your prayers.

We were impressed with New York Presbyterian and their staff. They were kind and patient and very caring, from the OR to recovery to ICU. Plus, our room had a view of the East River.

The schedule for the upcoming week is light. A clinic visit for counts on Tuesday. On Thursday & Friday, they will do a "flow study" to make sure the catheter works correctly. The following Monday, she should have her "test" dose of the antibodies. She will be admitted for a day or two for the antibody injections.

Thank you all for your continued prayers for Hannah. And please offer prayers for comfort for Madison's family and for strength for CJ's family. Unfortunately, there are so many children who suffer in many ways, they ALL need our prayers.

Friday, October 7, 2005 2:40 PM CDT

Hannah is out of surgery and doing fine!
We were at the hospital at 7am. She went down for her MRI about 9am. This MRI was to place markers used in the surgery to help guide the catheter through her brain.
After her MRI she was a bit cranky and we had to wait for a bit, a couple of hours, before going into OR around 12:30p. Mom and Dad actually were allowed to carry her into the OR room, a new experience for all of us. She came out of OR around 2p. Dr. Souewdaine said the surgery went very smoothly and he was pleased with the placement. Tomorrow she will have a CT to check the placement of the catheter, making sure it is in the correct position in the ventricles. If all goes smoothly, we hope to be discharged tomorrow afternoon. Hannah is currently (4p) still in recovery, we are waiting for an ICU bed to open up. We are so very relieved that things went well.

We are still not sure what this weeks schedule is going to be. We know she will have to have bone marrow aspirations and a flow study. At this time, that is all we know of. Her "test dose" of the antibodies should be on Oct. 17th.

Thank you all for your continued prayers.

(I will try to post another update tomorrow.)

Thursday, October 6, 2005 2:10 PM CDT

Hannah is in New York City.
Our flight up went smoothly arriving in NYC about 2:30p. Hannah was very good on the plane. She watched cartoons for awhile before falling asleep shortly before landing. We were able to go right to Ronald McDonald House and get settled into our room. Then we headed out for a bite to eat and a short visit to the park. When we returned to the "House", we learned that the sweet little girl, Madison, had passed on Tuesday due to complications from pneumonia. Needless to say, it hit us pretty hard. Please pray for peace and comfort for her family.
This morning we had a consult with Dr. Souwedaine, neurosurgeon, at New York Presbyterian. We liked him and he help set us at ease. They perform this Ommaya procedure 150 times a year.
Hannah is scheduled for Friday morning at 7am. They will do a special MRI to help guide the placement. Then to the OR for the actual placement of the catheter. The whole process will take 4-5 hrs. Then she will be in the PICU overnight for observation. She will then have a CT to check the placement of the Ommaya catheter. If all goes well, she'll be out sometime on Saturday.
After Dr. Souewdaine, we went across the street to Sloan to meet with Dr. Kramer. We discussed many aspects of the upcoming treatment with her. Hannah will be the 11th patient treated with the 8H9 monoclonal antibodies. According to Dr. Kramer, all of the patients have tolerated the treatment with minimal side-effects. However, it is experimental, and there are risks of side-effects that are not known. Please pray that Hannah tolerates the treatment well. After we know the Ommaya is placed correctly and working, she will be scheduled for a special "flow" study and bone marrow aspirations next week. We expect the first "test dose" injection to be on Monday, Oct. 17th and the "treatment dose" a week later.
Hannah is doing well. She shows no signs of being troubled by being back in NY or at the "House" or in two different hospitals in one day. We are currently waiting to get her blood drawn for testing.
Please, Please, pray for the surgery and recovery to go well with NO complications, and that her upcoming treatments are without pain and are effective against her disease. Don't forget to pray for Madison's family and all the families of these little warriors. God Bless.

Monday, October 3, 2005 11:28 AM CDT

Hannah had a clinic visit this morning.
Her counts look great! Her red blood=10.9, her platelets=121, her ANC=2800. These were very important results. On Friday, I contacted the neurosurgeon's office in NY, Dr. Souedaine, to see about scheduling the Ommaya procedure. He will be out of town the week of Oct. 10th. So, they scrambled to get us scheduled before then. But of course, all this was going to be based on her counts today. (She had to have a platelet count of 100 for the procedure, 121 today!). So, as it stands right now, we will fly to NY on Wednesday. On Thursday, we will have a consult with Dr. Souedaine and a clinic visit at Sloan. Her procedure will be on Friday at 7am at New York Presbyterian (right across the street from Sloan). She will be kept at least one night for observation. The following week, we will get started on the intrathecal antibodies. Unfortunately, that's all the details I have for now.

She has been doing pretty well. Acting pretty normal and happy and playful. Her eating is ok. Her energy is at a decent level. She looks pretty good. She is talking up a storm. She's still into the Princess thing.

I would ask you all to add a precious little girl named Madison to your prayers. We met her during our last visit to NY. Her family is from LA, so they have had much to bear. Madison is having a very rough time following some harsh chemo. Please pray for her and her family and maybe visit her website and leave some encouraging words for them. Madison's site

Thursday, September 29, 2005 10:03 PM CDT

Hannah had a clinic visit on Wednesday.
Her counts were a mixed bag. Her Hgb=7.3, so she needed a red blood transfusion. Her platelets-53, that is a bit higher, and that's good. Her ANC=5900 with GCSF. So, we will see what her counts are on Monday. If the platelets are holding or higher, we will probably not do the stem cell rescue. If they have dropped, we will probably have to do the rescue. Again, we are torn of what to do. Giving her the stem cells may introduce exactly what we're trying to get rid of, but waiting too long will give the disease time to comeback. Her platelet count has to be 100 for the brain procedure in NY. Monday's results will be decisive.

Assuming her counts are higher, we are tentatively planning to go to NY the week of October 10. We are checking to see what the surgery schedule in NY is going to be.

Thank you for your continued prayers for Hannah.

Monday, September 26, 2005 6:15 PM CDT

Hannah had a clinic visit today.
Her counts were not what we were hoping for. Her red blood dropped to 7.5, her platelets=44, her ANC=330 (we stopped the GCSF over the weekend). She did not get any transfusions today. If she shows that we need to, we'll go into the clinic tomorrow for one. If not, she'll have her counts checked again on Wednesday and probably get transfused then. If her counts don't start trending up, we're going to have to consider the stem cell rescue. She's a month out from the end of her last chemo and we can't start the intrathecal antibodies until her counts are higher. We don't want to wait too long and give the disease a chance to make a comeback. We'll have to see how she does the rest of the week.

She had a pretty good, but low key weekend at dad's. We did some finger painting and made a mess. We played in her "baby" pool a little bit. She helped dad make some cupcakes, although she was mostly interested in the frosting part. She didn't behave like her counts were low, but sometimes you just don't know.

Please continue to pray for her and that her counts come up and we won't have to do the stem cell rescue.

Jacob Update: Jacob is doing a bit better. Although, he is still inpatient (he's been in the hospital for over a month). Please pray for him and his family. Jacob's Site

Friday, September 23, 2005 2:59 PM CDT

Hannah had a clinic visit this morning.
Her counts look pretty good. They are still holding pretty good from Wednesday. She'll have another clinic visit on Monday to check her counts again. Her ANC is up to 5900, so we'll stop GCSF over the weekend (Yeah! No shots!).

I met with Dr. Wynn this morning to go over her last MRI scans. It was amazing to see that there was NO evidence of the previous spots. There is still some enhancement where her clot was, but that is expected. The enhancement in the 4 vertabrae in her spine looks to be related to the radiation. Basically, the marrow in those vertabrae is gone for good. In young children, the vertabrae and the hip bones have most of the blood producing marrow. We are still waiting to her from Sloan and what their impressions are.

Depending on her counts next week, we will probably start making preparations for another trip to NY. There will be alot of scheduling and logistics involved. First, we have to get her scheduled for the procedure to put in the Omayya port in her head. Then, a "dose" injection of the intrathecal antibodies, then a "treatment" injection. All this is expected to take about 3 weeks.

Thank you all so much for your prayers and support.

Tuesday, September 20, 2005 5:57 AM CDT

Hannah had a clinic visit on Monday.
Her counts are encouraging. Her Hgb=7.8 (a little low but no transfusion), her platelets=38 (she had a transfusion on Friday), her ANC=2100 (that is way up and good to see). We are hoping that she is turning the corner and that her marrow is starting to produce enough blood cells to support herself. Last week she had multiple transfusions and a MRI scan, that meant her port had to be "accessed" 3 times. Each time is a bit traumatic. So we were very glad she didn't need any transfusions on Monday so she didn't need to be accessed. She is becoming apprehensive of the clinic, because of the "owies" of being accessed. It is a drawback of the port vs. the broviac. But the port is less of an infection risk when she is not accessed.

We are waiting to see how her counts do this week. She will have another clinic visit on Wednesday. If they continue to trend up, we will start thinking about when to make our trip to NY to start the intrathecal antibodies. We sent the scans to the docs in NY to look over. We pray they will confirm that her brain is clear of disease.

Her appetite and energy have been pretty good. She does get cranky when her counts are low, but that is understood. Overall, she's doing pretty well.

Please pray that her counts continue to increase and she doesn't need more transfusions. Please don't forget to continue to pray for Jacob, he is still in the hospital after his chemo.

Friday, September 16, 2005 2:17 PM CDT

Hannah had great results from scan! PRAISES!!!
I have not had the opportunity to see the pictures myself, but according to the radiologist, the brain appears clear. There is some enhancement in her spine, but that is believed to be from the radiation and not disease.

Her platelet counts were low today, so she received a transfusion. Her red blood is holding. Her ANC=470.

I apologize for the delay and the short post, but I'm pretty busy with work right now. I will post a more elaborate update over the weekend.

This is Great news. Thank you all so much for praying for Hannah and please continue.

Wednesday, September 14, 2005 8:06 AM CDT

Hannah had a good weekend.
Her energy was pretty good. Her appetite is still pretty good. No nausea and it seems the diarrhea is pretty much done. She did have a platelet transfusion on Monday and her ANC was low, 570. So, she will continue on the GCSF to help her white counts. Her red blood is holding ok.

Today @ 2:30p, she will have an MRI of her brain & spine. We hope to have the results tomorrow. Please, Please pray for clean scans. Depending on what they show, we will be having to make some tough decisions in the next few days.

We thank all of you for your thoughts and prayers and ask that you continue praying for Hannah.

Thursday, September 8, 2005 7:06 PM CDT

Hannah had a clinic visit today.
Her blood counts had dropped enough to require transfusions, both red blood & platelets. It was a long day at the clinic for both mom and Hannah, she can be pretty cranky when her counts are that low. But we hope that these transfusions will be all that's needed. We are past the point of doing any stem cell rescue. She will have another clinic visit on Monday. The diarrhea and nausea are pretty much gone.

She is scheduled to have an MRI on Wednesday the 14th. We will be very anxious for these results. They will determine if another brain surgery will be needed. I would like to clear up some confusion from my last posting. I did not mean that the tumors are gone in her brain, (we hope & pray that this MRI will show that they are gone). What I meant was, we are going to be able to do the intrathecals without a tumor sample. And the only way of getting a sample was through another brain procedure to remove residual tumors, which we are all prying we won't have to do. I know this is pretty confusing and I hope this clears it up. Just keep praying for a clean scan!

Thank you all for your prayers and support.

Tuesday, September 6, 2005 3:46 PM CDT

Hannah enjoyed her weekend visit with GrandmaD & Pappy.
We went to a small park, where she chased some ducks and took a little swing. On Monday, we had the Labor Day cookout with burgers & dogs, none of which Hannah ate. Although, for the most part, her eating is holding pretty well. Mostly we all hung out around the house and played and colored and baked some cookies. Her energy was good, at times, but she tires pretty easily. In part,due to the fact, that for the past week or so, she's been waking up in the middle of the night, with plenty of energy and believe it or not...wanting something to eat. So, after the "midnight snack", it takes a little bit to get her back to sleep. (It doesn't help mom or dad either.)

We did have to interrupt the weekend with a trip to the hospital for a finger prick to get her blood tested. We stopped in to say "Hi" to Jacob, who wasn't feeling too well. Please continue to pray for Jacob and his family.

She is still experiencing some chemo effects, mostly the diarrhea accompanied with some bad cramps and some nausea. The effects have diminished some over the weekend, and it feels so bad not to be able to do anything to stop it. Minus some crabby times, she really deals well with it. This also applies to taking her "med meds". They're not fun for anyone, especially her, but she puts them down like a trooper. For the most part, she takes the pills on her own now. We praise her for taking her "med meds" so good. She is amazing.

Her blood counts were holding pretty well but have trended down. As of this morning, her ANC=1300, Hgb=8.3, Platelets=35. These are all down from Sunday's numbers and if they continue down, she'll need transfusions. Transfusion levels: Platelets=20, Hgb=7.5. She'll have another clinic visit on Thursday to check her levels and transfuse if needed. We may not be out of the woods yet with the stem-cell rescue. We'll have to see how she fares the rest of the week. Please pray her marrow "kicks in" and the stem-cells aren't needed.

Ok, on to some great news. I received a call from Dr. Kramer on Friday evening telling me that Hannah was eligible for the intrathecal antibody trial because an "exception" was granted for her. There was a required frozen tumor sample for testing, we couldn't find a frozen sample anywhere, so we didn't know if we were going to be able to do the trial. This means that, as we all prayin for, she does not need another brain procedure (because the tumors are GONE!), and that we continue to this phase of the treatment. This trial was a large factor in our decision to go to NY. Anyway...the next round of chemo was partially based on not knowing if Hannah was going to get the "intrathecals" or not, since she is going to get them, that chemo round has been cancelled. This gives her more time to get fully recovered. We will try to get her MRI scheduled for the week of the 12th. At that point, we can evaluate what kind of response is noticed. Beyond that, there is an "open" plan, if you will. We will focus on getting her to that point.

We hope all of you had an enjoyable weekend with friends and family and that maybe you ate a bit "too much". Please continue to pray for Hannah and the other Warriors. All of you know of the suffering of all those affected by the storm, we pray for their strength as well.

Friday, September 2, 2005 1:31 PM CDT

Hannah's been feeling the chemo effects.
Thursday, she had diareha and was vomitting for most of the morning. By the afternoon, she was feeling a bit improved. She had a clinic visit, her counts have started coming down. We will have to monitor them over the long weekend. We will also have to watch for dehydration. As of this morning, the nausea has decreased but the diareha (from the irniotecan) is continuing. All we can do is try and keep as comfortable as possible. We give her meds to help with the nausea and diareha, they don't always work.

After some discussion with the docs, her next round of chemo is still scheduled for Sept. 12th. We pray that she will continue to improve and gain strength till then. After that round, she will most likely need a stem-cell rescue.

Please keep Hannah in your prayers.

Tuesday, August 30, 2005 9:21 PM CDT

Hannah finished this round of chemo on Monday.
She continues to do really well. Her counts are still looking good. So good, in fact, that the docs want to do another round of chemo. The thinking is that since she has tolerated the chemo so well, do another round, hoping that it will have higher effectiveness. Right now, that round is scheduled for Sept. 12th, however, that date might get moved. After the 2nd round, she will most likely need the stem cell infusion.

Her spirits and energy have been great. Her eating is maybe slightly diminished, but still ok. We haven't seen any "diareha explosions" yet, but there are signs that they are coming. We are all pleasantly surprised on how well she's doing. But we must not let our guard down, these things can change quickly.

Speaking of changing, our friend Jacob has been improving over the last few days. He is starting another round of chemo after some test results showed a decrease in certain markers. This is great news and proof that the prayers are working. The docs are scratching their collective heads!

So, PLEASE, Keep sending up the prayers for both Jacob and Hannah. God is listening and showing the power of His healing Hands!

Sunday, August 28, 2005 3:15 PM CDT

Hannah was discharged on Sunday. Happy to be Home!
So far, she has tolerated the chemo rather well. She did have some nausea early Saturday morning. But she is still eating pretty well. Her recent favorites seem to be pizza and onion rings. She is maintaining her weight really well, actually on Saturday she weighed 31lbs, I'm sure some of that is water weight from the hydration fluids. No diareha as of yet, that will probably come this week. Her energy is really good. For the most part her disposition is good. She is much more cognisent of the "tubie" when she is hooked up for her chemo. She doesn't like them. She has been amazing when having to take the oral chemo, temador. Unfortunately, it comes in 5 pills, none of them are small (another facet of using adult chemo with kids). After a bit of coaxing, she puts them in her mouth, a swig of water, and she swallows. Then we give lots of praise. On Saturday, we managed to get a "pass" out of the hospital for a bit. She really wanted to go to "Toys R Us", so we did. We got her some Belle dolls and a Barbie video.

She will finish her chemo on Monday with a clinic visit for the irinotecan and her last dose of temador at home. We will monitor her counts during the week to see how hard they are hit by the temador. As of today, her counts are pretty good; Red blood=9.4, platelets=210, ANC=1000. But we expect them to drop over the next few days. We are still praying that she will not need her stem cells.

Please continue to pray for Jacob and the Duckworth family. Pray for God's Hand to deliver a miracle for them and their little boy. Let them know you're praying by leaving them a message on Jacob's website.

Thursday, August 25, 2005 4:31 PM CDT

Hannah's surgery went well today.
She went back to the OR around 9:30a, she came out around 11a. Dr. Albert came out and said that everything went "very smooth". Shortly after she woke up, we went to her room on the oncology floor. She ate very well for lunch, some pizza, pasta pickups and a jar of baby food, and of course, goldfish. It appears that the megese is working well. She seemed to be in some discomfort from the new port. We had to give her a little something for that. She has developed a bit of a rash, we're not quite sure from what. It started on her right shoulder and has spread quite a bit. It may be due to the antibiotic she was on. That is now finished, so hopefully the rash will resolve itself. Overall, I would say that she recovered pretty well. Her chemo got started around 4:30p, it's an hour infusion of irinotecan. Later, she will have to have the oral chemo, temador. This cycle will repeat for the next 4 days. She will be inpatient till Sunday afternoon, if all goes well.

I ask you to pray for Jacob Duckworth and his family. Jacob has had a couple of relapses and the last treatment was not effective. He's a great boy with a great family and they need your prayers for his recovery. Click here for his website.

Monday, August 22, 2005 5:47 PM CDT

Hannah's HOME!!!
She arrived in Tampa Saturday afternoon. With only the minor glitch of losing the luggage the contained her meds. That was resolved by the end of the day, the luggage & meds, were recovered at the airport.

Her spirits and energy have been great. She definetely appears glad to be home. She's running and screaming, which we remind ourselves, is a good thing. It seems the megese has taken effect. Even with being on TPN, she is eating very well. Today, her weight was 30lbs. Yeah!

We had a consult and clinic visit today. The consult, with Dr. Albert, went pretty well. In clinic, they pulled her "temporary" line, as an infection precaution. She is scheduled for surgery on Thursday at 10am. Dr. Albert will put in a medi-port just under her left shoulder. It will be under her skin and be "accessed" when she needs meds or blood draws. It's a bit more difficult of a surgery being on the left vs. the right side, but because she's had 3 cuts on the right, it was decided to use the left side. Please pray their are no complications with the surgery. After the surgery, we will stay inpatient and start the chemo immediately, hopefully Thursday afternoon. This cycle will last for 5 days with irinotecan and temador (which is a pill, that should be fun). So, she will stay inpatient through Sunday, at least. Finish the chemo as outpatient on Monday.

After the chemo cycle, their is the distinct possibility that she will require another infusion of her stem cells to help her marrow recover. It is not for certain. It will have to be determined 48hrs after the end of chemo, according to her blood levels, whether the stem cell infusion will be needed. Unfortunately, there is quite a logistical "snafu". St. Joes does not have the certifications necessary to handle stem cells. So, we would have to go to All Children's to have the infusion. They don't seem too keen on having us back (remember the stem cell collection gone bad). Hannah's stem cell's are actually still at Shands in Gainesville. If things can't be worked out with All Children's, we may find ourselves driving to Gainesville. Let's pray that she doesn't need them at all, that her marrow will recover on it's own. And that all this is a mute point. However, we must be prepared if they are needed.

Your prayers are still much needed. She has a tough couple of weeks ahead. Pray for a smooth surgery, smooth chemo cycle with no stem cells needed and a quick recovery from both.

Friday, August 19, 2005 3:09 PM CDT

Hannah's coming HOME!!!
She had her last radiation treatment this morning. Dr. Wolden, the radiation oncologist, said she looked great. Her blood counts came back looking really good. We were released from Sloan this morning. Lots of logistical changes had to be made. Mom handled them all as well as booked a flight for Saturday morning. So, Hannah should be arriving in Tampa in the afternoon. Praises!!!

Monday will be a clinic visit at St. Joe's as well as a consult with the surgeon, Dr. Albert. We will find out then when the surgery will be. Hopefully, by the end of the week. The following Monday, we'll start round 2 of chemo.

We would like to express our deep gratitude to all the parents and teachers at Hannah's school, CSZ. They raised over $1,600 to help with the housing expenses at Ronald McDonald House. That will be a tremendous help in our future trips to NY. THANK YOU SO MUCH!!!

Thank you all for your prayers, they are working. Hannah is still strong in spirit and physically.

Wednesday, August 17, 2005 3:47 PM CDT

Hannah is continuing to rebound. Her energy and spirits the past couple of days have been good.
Monday night, she had TPN (IV nutrients)at the "House", that all went ok. She did cough quite a bit during the night and I was worried we wouldn't be able to do her radiation the following morning. On Tuesday, we were at the clinic at 7am. They gave her a med to help with the cough, she had her radiation about 8:15a. It went well. We were hoping to get to Central Park for a little fun, but on our way out of the clinic, we were told that she had to be back at 1p for her MIBG injection. So, we went to the "House" and she actually ate pretty well. Then we headed back to Sloan. After about an hour wait, we finally got the injection. Back to the "House" about 3p.

Her hair had been falling out since about Friday, but Tuesday morning, her bed was full of hair and she had quite a bald spot on the back of her head. I told her that daddy needed to give her a haircut. Initially, she didn't like the idea. But I told her if we cut her hair short, it wouldn't be itching her and getting in her mouth and eyes. Then she said ok. So, we got in the bathtub and she was such a trooper as I shaved her head, and I held back the tears. Afterwards, we put on her "pretty Cinderella dress". She is so cute, with or without hair!

Her mom and "Pop-Pop" arrived at the "House" about 4p, we discussed all the medical issues and we were off to the airport. I would like to thank my friend, Marny, who came to help me while in NY. She was great company and such a help with Hannah while I attended to all the "logistics" of care.

On Wednesday, Hannah had her radiation and then her MIBG scan. She was down for almost 2 hours. So, she was a cranky for a bit afterwards but came around later. Her blood counts, as of Tuesday, look really good. We think the "extra" break from radiation may have helped. The docs at Sloan are happy with how she's tolerating the treatment. She has 2 days left of radiation and that should be it, for now.

Thank you for your continued prayers.

Monday, August 15, 2005 1:53 PM CDT

Hannah has improved over the past couple of days.
Her last fever was on Friday. She's had no nausea and only a couple episodes of diareha. Her eating is still pretty limited, she's been on the "Goldfish Only" diet the past couple of days. At least it's something. Her radiation was cancelled this morning because she still has a cough and the anesthesia staff didn't feel comfortable keeping her sedated. We hope to try again tomorrow. Her x-ray from Sunday showed her lungs are clear, but the cough remains. She was discharged today around 2pm.

She did start TPN (IV nutrients) on Friday night. She is also getting a medication that will hopefully stimulate her appetite. She will continue on the TPN for awhile.

Her energy seems to be improving also. When we got to the "House", she was running and jumping. We hadn't seen that in quite awhile.

So,the plan remains to come home on the 22nd (barring any unforseen complications), get her port put in, do another round of chemo in Tampa, then evaluate.

It was so good to see her, even being inpatient. Mom will return on Tuesday and I'll go back to FL. We would both like to deeply THANK ALL of you who donated to the Ronald McDonald House for our housing. I know many from Hannah's school contributed generously. Again, THANK YOU so much.

Please continue your prayers for Hannah, that she can get through this week of radiation without any more complications and that we can get her home on schedule.

Friday, August 12, 2005 7:01 PM CDT

Hannah continues to have a pretty rough go of it.
On Thursday, she had her radiation in the morning. The rest of the day she stayed in bed, except for an hour or so in the evening, she went to the playroom. Her energy is very low. This morning, there were some problems with the sedation for her radiation. She had alot of mucus which caused problems. So, they scrubbed the radiation (which throws off our "hopeful" schedule). Later in the day, they took an X-ray which showed a small amount of aspirate in her lungs. They adjusted the antibiotics and we hope that will take care of it. She also popped another temp of 103F, which means she will have to stay inpatient, they think it is due to a sinus infection. We were already prepared to stay inpatient so they could start her TPN tonite. This has been a very frustrating struggle with the docs to get started, and I'm still not sure why the didn't want to. We hope the TPN will help her feel a bit better. Maybe the weekend break from radiation will help too.

Because of the missed radiation treatment, we are now looking to get her home on Monday, the 22nd. That, of course, is barring any further complications. After we get back to Tampa, we hope to have her surgery to put in a port. Her next round of chemo should start on the 29th.

I will be flying to NY on Saturday morning. It has been so difficult being away from her. It's also been difficult for mom to be there mostly by herself. We all need your prayers and ask that you lift up Hannah's name for healing.

Wednesday, August 10, 2005 11:21 PM CDT

Hannah has had a bit of a rough week thus far.
Her eating and drinking have diminished to next to nothing. She has been receiving hydration fluids while at the clinic. On Tuesday, her central line came out unexpectedly. She did not have pain or bleeding, but it came out totally. So, today, they put in a "temporary" central line. We will have to determine when and where to get another one put in. Afterwards, she had her radiation treatment. She also had a bit of a fever this morning, she received some antibiotics and they drew cultures and had an x-ray of her lungs. By this evening, her temp rose to 103F. So she was admitted to the floor. They will probably keep her inpatient for at least 72hrs until the culture results come back. We hope to get her on TPN (IV nutrients) as well, as she has lost more weight (she's lost a total of 5lbs since July 1). On Monday, we had discussed the possibility of bringing her home on Thursday, the 18th, following her last radiation treatment. We don't know if that will still be possible now. Actually, we don't know what the next week will hold for her. Her energy level has really dropped off in the past couple of days. I'm sure it's from a combination of the chemo, radiation, and just plain not feeling well. It's so hard knowing that she feels bad and not being able to fix it.

Please pray for her strength to get through all this and that we will be able to get her home soon.

Friday, August 5, 2005 4:33 PM CDT

Hannah has finished this round of chemo!
She has handled this week so well. We expect to see some of the side effects of the treatment to start next week. Her counts actually looked ok today; Red blood=9.4, Platelets=263, ANC=2500 (which is increased a bit). We still must gaurd against germs and infection.

Hannah and mom will be visiting some family over the weekend. And getting some well deserved rest also. No planned clinic visits. I am back to work in FL. I miss Hannah terribly. I hope she enjoys her weekend.

She will have radiation each day for the coming week. On Thursday she will have an MIBG scan. It is very specific for neuroblastoma. We had one at diagnosis, when there was alot of disease, and it was negative. We were told that it doesn't work on some kids. The docs at Sloan still wanted to try it again. They have alot of experience doing them. So, we agreed. It's another scan that she will have to be sedated for. However, it is scheduled immediately after her radiation so there's only one sedation period for the day. After her treatments, she should be able to go back to the "House" to play. She may require transfusions depending on how her counts go. We pray they will be minimal.

Hope everyone enjoys their weekend. Thank you so much for the prayers and support.

Wednesday, August 3, 2005 3:09 PM CDT

Hannah seems to be tolerating the treatments really well.
So far, we have not seen any of the anticipated side effects of the chemo and radiation. Though, I fear they are coming. Her energy has been pretty good. Her appetite, not so good. Her mood is generally happy with the occasional melt-down. Sometimes it's hard to determine exactly what is treatment related and what is 3yr old related. But overall, I'd say she's handling things pretty well.

Yesterday, after her treatments. We took her to the Children's Museum of Manhattan. It's a really cool place for kids. There was an area of Dr. Suess activities with lots of silly things to try. Upstairs was an area that was totally Dora. As you can imagine, she loved it. And outside, they had a water play area. This will probably be her last "outing" as her counts are starting to drop from the radiation. On Monday, her ANC=2900, today it was 1300. So we'll have to again be very cautious as to what she is exposed to.

Tomorrow afternoon, I will be returning to FL to go back to work for a bit. Mom will be staying in NY with Hannah to continue treatment. Please keep mom in your prayers, she will need lots of extra strength.

Each day, I meet another parent, and hear another story of a little one fighting this beast. Please pray for Hannah and the other warriors. If you haven't done so, I encourage you to go to the NB warriors link on this page, and see some of the other kids.

(PS-We'd like to wish Emily a safe trip home to FL. It was great to meet her in person. We pray she stays NED forever. www.caringbridge.org/fl/emilyadamson)

Monday, August 1, 2005 1:43 PM CDT

Hannah had her first day of chemo & radiation today.
She's doing pretty well this afternoon considering the morning she had, plus she woke up around 2a and never went back to sleep. We were at the clinic around 7a this morning. Her radiation went well, about 30 min. Then an hour of chemo. We were out around 1p.

She had a pretty good weekend. Mom & dad had to do an unplanned dressing change on Saturday. There was some blood on the dressing. We think that her "tubies" got pulled on a little while she was sleeping. We also got an x-ray today to make sure the placement was correct. After that, we hung out at the "House". On Sunday, we went to visit some of mom's family in Queens. Thanks to cousin Adam for his taxi service. Dad visited Ground Zero to pay respects.

Hannah will have chemo & radiation each day for the rest of this week. Then it will be radiation only until the 17th. IF, all goes smoothly, we hope to be able to bring her home on the 22nd. Please, pray that all goes smoothly.

I would have to say that, so far, we have all adjusted to NY pretty well. Hannah has always been an observant child, and there's plenty to observe here. The Ronald McDonald house can be a little chaotic at times, but it is a good "home away from home". We've got to meet quite a few parents who we can relate with.

Please continue to pray for Hannah and all the other warriors. Thank you.

Friday, July 29, 2005 8:24 AM CDT

Hannah had a "free" day on Thursday.
We went to the Central Park Zoo in the morning. She enjoyed the polar bears and watching the penguins get fed. Then we went to a petting zoo where she fed some goats and sheep. As we walked towards Times Square, she fell asleep in her stroller. And she slept right through all of Times Square! After waking from her nap, around 3p, she ate a tiny bit and we headed back into Times Square. We went to the Toys R Us, a four story toy store with a ferris wheel! She really enjoyed the ride on the ferris wheel, we rode in the "Little Pony" car. Some friends of dad's from work met us in the store and brought her some new stuff, including a Cinderella doll with a light-up dress. Which made Hannah's face light up! After that, she had her first experience on a subway as her and mom headed back to the Ronald McDonald House.

Friday morning, bright and early at 7:45a, we were at the clinic. She is currently getting her first radiation treatment. She will have 14 treatments to her brain and spine, each treatment requires her to be sedated. Even though we knew this was coming, it is so hard to leave her in that room.

We hope to meet Dr. Kushner today and further discuss her treatment. There are some frustrating things that have come up, regarding more tests and tumor samples that need to be resolved. There is so much that is involved, each day, it is sometimes overwhelming.

Please pray that the radiation does it's job with no side effects and that we can start chemo on Monday. Please continue to pray for strength and wisdom for mom & dad as well. Thank you all for your continued support. It is time to fight again!

Wednesday, July 27, 2005 3:15 PM CDT

The past couple of days have been pretty busy for Hannah.
On Tuesday, she had an MRI of her brain and spine, bone marrow aspiration (here at Sloan they check 4 locations in her pelvic bone, 2 in front & 2 in back), and also a spinal tap. Today she had the radiation simulation. That is where they make the mold that will be used during her radiation treatment. During this treatment, she will be laid face down on her belly. The mold ensures she is in the correct position for each treatmnet. She recovered from sedation pretty well on both days.

Yesterday, we also got a room at the Ronald McDonald house. So, after her scans, we went and got settled in. It is a pretty nice place with a big playroom. They seem to have alot of activities for the kids. That is where Hannah will be staying for the next few weeks.

We spoke with Dr. Kramer today regarding some results. Her MRI did not show any "new" spots, nor did it show anything on her spine. That's Great news which also seems to indicate that another surgery will probably not be necessary. Her spinal fluid was also clear, more good news. Two of her bone marrow aspirates came back negative, the other two haven't been read yet.

So, here's where were at...This Friday, she will have her first radiation treatment. On Monday, she will have radiation in the morning then chemo infusion. That will repeat for the week. The following week, she wil have radiation only. We don't know how her body will react to all this. We suspect that with both the chemo and radiation simultaneously, she will be pretty wiped. Plus, she has not had this particular chemo before, so we don't know how it will affect her counts which affects when she can come home. But that is our plan.

Thursday is actually a "free" day with no planned hospital visit. We will try to do something fun, maybe Times Square, and enjoy the day trying to be "normal" tourists.

We thank you all for your continued thoughts and prayers.

Monday, July 25, 2005 3:07 PM CDT

Hannah is in New York City, on her birthday.
Our flight out of Tampa went pretty smoothly. We arrived at JFK around noon. Hannah spent the afternoon and evening with her mom's family. Dad took a stroll to Central Park.

Today was full of waiting and meeting. This morning we met with Dr. Cheung, had an x-ray, then met with Dr. Wolden. It is currently 4p, so much for being out early. We still plan to have some fun tonite. Tuesday, Hannah will have bone marrow and MRI. We were hoping to be fitted for the radiation mold, but that's scheduled for Wednesday. We're not sure what day treatment will start. There is still some planning and discussion that has to happen.

While at Sloan today, we did get to meet 3 kids that have been treated here for CNS. They all looked great. The child life worker, Jennifer, actually there together a little impromptu birthday party for Hannah, complete with ice cream cake. This is so much different than at home, but we still feel this is the right place for Hannah.

Please continue to pray for Hannah and also for wisdom for the doctors who are treating her. Thank you all for your continued support, we will need it to get her through.

Saturday, July 23, 2005 5:03 PM CDT

Hannah had a rough day on Friday. We got to St. Joe's at 7am. Hannah did not have a good nite sleeping so she was still asleep when we got there. They took her back to the OR around 9am, on time, actually. However, about 11am, Dr. Albert came out to tell that there were some complications during the surgery. The vein that she used to put the catheter in, split (probably because of the damage to vessels from hi-dose chemo). She got the vein tied off and then found that the tip of the catheter was not in the correct placement in the heart. Because she didn't want to cause further damage to the vessel by manipulating the catheter, they had to have an interventional radiologist come in through her femoral vein to move the tip into the correct position. Overall, Hannah was in the OR for about 3 hours, alot longer than expected. She woke about an hour or so later, feeling kinda crappy and sore. Because of the complications, Dr. Albert wanted her to stay in the hospital overnight for observation. Which we did and everything was ok, no bleeding developed. We were a little unsure about flying but the docs said OK and Hannah was discharged Saturday around noon and went home to her mom's.

Her mom & I have been very busy making arrangements for the trip, which has been trying. Especially when you're not exactly sure how long you'll be gone. Our flight is at 9am, we'll arrive at JFK around 11:40a. Our name is on the list for a room at the Ronald McDonald house, but we're unsure of when a room will be available. Unfortunately, they are a very busy place.

Monday morning we will have consults with Dr. Cheung and Dr. Wolden, probably others as well. She'll have some blood drawn for her new tubies. Tuesday, she wil have an MRI, bone marrow and other tests. We're not sure if chemo will start on Tuesday, depends on blood counts and such. Once chemo starts, she will also receive her radiation treatments. That's the plan so far.

The prayer requests are many; Hannah's recovery, safe trip, good response to treatment, strength, patience (that's a hard one). But please, continue to pray for Hannah, we know that is what will keep her strong for the road ahead.

Thursday, July 21, 2005 7:41 PM CDT

Hannah is scheduled to have surgery Friday morning @ 9a to place another broviac (central line), remember, "tubies". They're back. The line will be needed to administer meds & chemo. We had hoped to be able to have a port, which is under the skin, but she is too small for the type needed.

We have decided to purse Hannah's treatment in NY at Sloan. This was indeed an excruciating decision. We both feel that this gives Hannah the best chance at long term survival. We will fly to NY on Sunday morning. Once safely in NY, Hannah will go with her mom to see her great-grandma and other family. On Monday, her 3rd birthday, we will go to Sloan for the first time and meet with Dr. Cheung and Dr. Wolden to discuss treatment details. Hopefully we'll be out early, noon or so, and will be able to do some fun things for her birthday later in the day.

Monday, July 25th !!!!!HAPPY BIRTHDAY HANNAH!!!!!

On Tuesday, she will have another MRI, bone marrow aspiration, maybe start chemo (hopefully). he chemo will be for 5 days, with radiation concurrently. We don't know the exact number of rounds of radiation yet. Most of this should be an outpatient basis, which should be a good thing.

So, Hannah heads into this next battle, for her life. Please, pray that her surgery goes well, that we have a safe travel to NY, that she has the strength to endure. There is so much more I could add to that list. Please pray for the other warriors, they also need strength.

Monday, July 18, 2005 8:00 PM CDT

Hannah had a full weekend of pre-Birthday parties.
On Saturday some friends hosted a party complete with Princess cake. She really has the "presents" thing down. She had fun playing, blowing bubbles, swinging, with Savanah & Garret. We came back to Tampa on Saturday night. Then on Sunday a small party at dad's house in the morning and another party at mom's later. We have alot of Disney Princess "stuff". She loves the Princess dresses & dolls. She is most definetly our beautiful Princess.

We are still trying to decide on a treatment plan. There are basically two paths (neither of which come with guarantees of any type). There is the "standard" relapse treatment of chemo & localized radiation, then evaluate effictiveness, most of which could be done local. At Sloan in NY, there is a new protocol which is more intense; requiring possible additional neurosurgery and total cranial and spinal radiation, chemo, and interthecal antibodies, but there have been some encouraging results in a limited number of treated patients. These are excruciating decisions for mom & dad to have to make. Please pray for our wisdom to make the best choice for Hannah.

Friday, July 15, 2005 8:18 PM CDT

Hannah went to Disney World yesterday. She really enjoyed seeing the Princess' and riding Dumbo, Pooh, and It's a Small World. Typical for Florida in July, it was very hot, then it rained for a bit. But we got in quite a bit of fun. We even stayed for the light parade and fireworks. I will try to get pics posted soon. Her energy was a little low, but her smiles were priceless.

We have received results from all her tests. Her bone marrow is clean. The PET/CT showed no new disease from her neck down. The skelatal survey was clean. So, it appears that the disease is localized to her head. There may be more microscopic disease that the scans cannot detect, both in her head and the rest of her body. Dr. Staba, from Shands, has been so helpful in contacting other doctors at Duke, St. Jude, CHOP, & Sloan-Kettering. We are considering the input from all these sources. There is some consensus that chemo and radiation will be needed. Surgery is also an option, but with differing opinions. We really hope to have a treatment plan by mid-next week. Please pray for wisdom that we make the right decisions for her. We are really struggling with how much treatment to put her through.

We will probably try to get her scheduled for surgery next week to put in a medi-port. This will be used to administer the chemo and other meds for her treatment without limitations to her activity like her old "tubies". So, she'll be able to take a bath and go swimming.

We appreciate all of your thoughts and prayers for our little Princess.

Wednesday, July 13, 2005 6:39 AM CDT

Hannah is doing pretty well. Her energy and balance are much improved. Monday evening, GrandmaD wanted to go to the beach, so we did. Hannah had a good time digging holes in the sand, chasing seagulls, and picking up shells. We watched a beautiful sunset and headed home.

Today Hannah will have her PET/CT and skelatal survey. We'll be at the hospital about noon and will probably be there till 3p-4p. We hope to have those results Thur or Fri.

We have received some results: CT scan was clean, the MRI of her spine did not show any disease, there was another small spot noted in her brain (that's 3). We are still waiting for bone marrow results, hopefully today. Once we have all the test results, we can start developing a treatment plan.

We are planning to go to Disney World for the day, on Thur. On Fri, we'll take GrandmaD back to Gainesville. On Sat, we'll have a pre-birthday party at a friends. Back to Tampa on Sun for another pre-birthday party at mom's.

Please keep sending prayers up for Hannah. God's Hand is needed for her cure.

Saturday, July 9, 2005 9:16 PM CDT

Today was a good day for Hannah.
After a good nite's sleep, she awoke early at 6a, Ready to go. She didn't eat much for breakfast. Her concern was putting on her new Princess dress, which, of course, we did. Then it was off to Great Explorations, a "hands-on" type place. She had lots of fun. Her energy was good. She was walking well. Good dexterity. Looking at her, it was hard to imagine she had brain surgery less than a week ago. But it was good to see. The hurricane was a bit of a bust, thank goodness. But the rain kept us inside the rest of the day. She ate almost a whole slice of pizza for dinner.

GrandmaD will be coming down for the week to visit. So, she's feeling better or just being stubborn, hard to tell sometimes. Anyway, it will good to have her company.

We have had so many leave encouraging words in the guestbook, I can't express how much that means. The outpouring of support touches our hearts. The many prayers from all of you will surely be answered.

Friday, July 8, 2005 9:20 PM CDT

Today was another full day for our little warrior.
We were transferred out of ICU to the floor around 11:30p. Hannah stayed up till about 1:30a before finally drifting off to sleep. We had a little time to play in the playroom before going down to MRI at 10a. She was sedated from 10:30 to 2p during which time she had an MRI of her brain and spinal cord, bone marrow aspiration and a CT of her chest, abdomen, and pelvis. She recovered very well from the sedation. Then it was back to the floor where she had a wagon ride with mom (pic to follow soon). We ran into Dr. Staba during our wagon ride. So, we had a little talk about the scans and what the results might be, and what options might be available depending on the scans. We were finally discharged around 5p and left Gainesville for home to prepare for Denis. Hannah will have a PET/CT scan at St. Joe's on Wednesday. After we have all those results, we will have consults with many docs to try and determine a treatment plan. Relapse treatment is somewhat different than initial treatment. There are so many variables to consider. We have many difficult decisions before us, please pray for guidance for mom & dad.

We hope the weekend will bring rejuvination and allow us all to regroup before going into battle, again. We know the thoughts and prayers of many are with us and our angel, we are deeply thankful and ask that you please continue them. Hannah's cure will require God's Hand be upon her.

PS - GrandmaD is doing better and is at home where she should be resting, but usually isn't.

Thursday, July 7, 2005 6:04 PM CDT

It is with a broken heart that I must tell you Hannah has relapsed. I truly believed I would never have to type those words. We received the confirmed pathology report this morning, neuroblastoma. Needless to say, it has been an emotional day filled with trying to determine what we need to do now. Although we could have been discharged, we decided to stay and have scans done here at Shands tomorrow. Hannah will have an MRI, CT, and bone marrow aspiration tomorrow. We need to determine if the disease is only in her brain or if it has spread to other parts of her body. Only then can we try to make decisions regarding treatment. Please pray that the Lord gives us wisdom in these decisions.

Hannah was walking better this morning, still a bit unstable. Her endurance was better as well. Her face is a little more swollen too. We got her outside for a bit and she played in the fountain. She's still talking pretty well, just not as much. Her cousin brought her a Cinderella dress which she just loved and probably won't ever want to take off.

Your prayers are needed now more than ever. Please keep Hannah lifted up.

Wednesday, July 6, 2005 7:34 PM CDT

The past couple of days have been rough ones for Hannah.
Tuesday started at 6:30a at Shands. We were taken up to pre-op pretty quickly, but then had to wait there for a bit. Hannah went back to the OR about 8:30a. In the OR, they fitted her with a metal "halo" device, and then took her to CT. We were notified a little after 11a that the procedure was done and was a success. The pathologist reported "abnormal" tissue, which meant that the biopsy had taken the desired tissue. We met Hannah in the ICU a little before noon. She was still quite groggy. When she woke, the first thing she said was "I want my glass shoes". The girl loves shoes. She slept most of the afternoon, waking only to vomit. We were told that the nausea was most likely due to the sedation med. As the afternoon passed, we became a bit concerned that she was still so lethargic. Dr. Pincus came by around 5p. He agreed that she should be more active. He ordered a stat CT and we were off to radiology. About 20 minutes later, Dr. Pincus and the rest of his staff came to the room. Hannah had developed a blood clot in her brain and she needed immediate surgery to remove the clot. Needless to say, this took us totally offgaurd and we were scared. The staff at Shands is great, which is why we're there. They had Hannah off to OR in 15 minutes. She came out of her 2nd surgery for the day around 8:30p. She was groggy, normal. She stayed groggy. We became concerned. But around 11p, she woke up and was alert and talking. We breathed a huge sigh of relief. Hannah went back to sleep around 12:30a and slept through the night. When she awoke, she seemed much more alert. Dr. Pincus came by and showed us the images of the clot, it was about 45mm. Putting pressure on her brain causing the nausea and lethargy. He felt pretty confident that while removing the clot, the majority of the growth came out as well. Later in the day, she had some physical therapy, she walked the hall, a bit wobbly, but still walking. It was a good thing to see. Later in the afternoon, she appeared to regress back to being lethargic and unfocused. We asked to have another CT done to check for bleeding. It came out normal, we were relieved. So, that pretty much sums up the past 36 hours.

We hope to hear from pathology in a day or so. This waiting is the hardest part. There's so much speculation, anticipation, and some denial. We really can't come up with a treatment plan until we know what we're trying to treat.

Hannah is still in ICU, and probably will be tomorrow as well. At this point, we just don't know what's going to happen from hour to hour.

Please, Please pray for a favorable pathology. The growths do not appear to be any type of infection or inflammation. So, pray for benign anything. Again, we appreciate all the thoughts and prayers for our precious little girl, please don't stop.

Also, please pray for GrandmaD. While at the hospital visiting Hannah, her hip came out. This is the 4th time it has happened and it's extremely painful. We got her down to the ER and x-rayed and put back in. She spent the day in her own bed in Shands and was discharged early this evening.

Thursday, June 30, 2005 10:15 PM CDT

We made the trip to Shands of Wednesday, after a bit of a wait, we met with Dr. Pincus. He confirmed that he believed there were 2 spots of interest. One spot about 2cm in the right frontal lobe and the other a 5mm spot in the left side, they both seem to forming the same way. There still was no clear indication of what they could be. His suggestion, because there were 2 spots, was to take a biopsy of the larger one, to determine pathologically, exactly what they are. With this procedure, they are able to obtain a diagnosis, 90% of the time. The procedure is called a stereotactic brain biopsy. They take an MRI and a CT and then combine the images in a computer, which guide the biopsy needle to the exact coordinates in her brain (with the guidance of Dr. Pincus, of course). If all goes well, Hannah may even be able to go home that evening. It seems to be the least invasive way to try and get the information we need. So, she was scheduled for an MRI this morning (Thursday).

After leaving the hospital, we went to GrandmaD's and had some Chinese for dinner. Hannah seemed to like the LoMein and fortune cookie.

This morning we were at Shands @ 9am and were seen right away. It took till about 9:30 for Hannah to be sedated. The scan took a little over an hour. GrandmaD and PappyD met us there when Hannah woke up. We all went over to a friends house, John Fox, who has a little pond by his house. He had made a special little fishing pole for Hannah, and she caught her first fish!!! (Actually, she ended up catching 4 little fish!) She wanted to hold each one before we threw them back in the pond. Then we looked for some ducks to feed. It was a much better afternoon than morning for her, and I was glad. Then, back home.

We will be back at Shands on Tuesday for her CT and procedure. We will enjoy each moment with her over the holiday weekend. We wish all of you a very Happy 4th of July weekend.

We would like to sincerely thank all of you for your continued thoughts and prayers for Hannah. We KNOW the power of prayer and believe that He will keep His hands on her.

Tuesday, June 28, 2005 5:46 PM CDT

We met with Dr. Wynn yesterday, the discussion was basically the same...there's something growing in her brain and we need to get it out to see what it is. It's not what we wanted to hear.

On Wednesday, we will be heading to Shands in Gainesville for a consult with Dr. Pincus, a pediatric neurosurgeon. We sent Hannah's scans and history up ahead of us. We have many questions. Hopefully, he can add some insight into what might be going on. We are also hoping to speak with a neurosurgeon from All Children's. We think the more eyes looking at her scans, the better.
It is a distinct possibility that Hannah will be having surgery early next week at Shands. Again, we will know more after our conversations on Wednesday.

Hannah enjoyed a birthday party at school on Monday. It was Elias' birthday, that's her best friend, you know. Cupcake was everywhere! Thanks to Elias' mom for adjusting the day for Hannah. On Tuesday, Hannah enjoyed a day at the beach with mom. We hope to cram in as much fun as possible with her before next week comes.

Please pray for Hannah and for wisdom for mom & dad.
Also, please pray for Jacob Duckworth (www.jacobduckworth.com). He is a friend from St. Joe's and he is going through some tough treatment at this time.

Monday, June 27, 2005 9:13 AM CDT

Hannah had her MRI scan on Friday. It all went pretty smoothly, alot of waiting. Her blood counts all looked real good. She was sedated around 12:30p, had her scan, and woke-up around 2p.

On Saturday, Dr. Wynn called with some disappointing news. The "spot" in her brain had doubled in size and looks to be a little bit more developed. We will be meeting with him this afternoon to discuss options. It appears that Hannah will need to have surgery to remove whatever is growing in her brain. So, we are busy trying to gather the necessary information and setup appointments.

Let me say, at this point, we do not have any definitive idea as to what exactly this thing is. That's why we need to get it out and identify it. We are staying positive that we can get it out with no adverse impact to Hannah's brain. We will know more after some neuro consults.

Please pray for Hannah. This will be scary for all of us, but especially for her. And please pray for wisdom for mom & dad, that we make the best decisions possible for Hannah.

PS-Please pray for PappyD. He spent a couple of days in the hospital this weekend with some heart trouble. It was a bit scary but he was discharged on Sunday and is at home resting.

Wednesday, June 22, 2005 4:07 PM CDT

Another quick update on Hannah.
We went to GrandmaD's for the weekend. A couple of Hannah's cousins were down from PA. We went to the museum in Gainesville which has an impressive butterfly atrium. Hannah did some painting and crafts as well. She was a bit leary of the big dinasours that were erected. All in all, I think she enjoyed it. Afterwards, we went to Sonny's for dinner. Hannah really liked their onion rings and ribs. On Sunday, we had a big dinner for Pappy's Day. Although, Hannah didn't eat much of it! Her eating is up & down. Some days she does real well, other days, not so good. But she's keeping her weight ok.

Her MRI will be this Friday around noon. We'll start at the clinic for a physical, then on to the Day Hospital for sedation. We'll also get some blood work done to check all her levels. Please pray that the sedation goes ok and that the "spot" is gone. I'll be sure to post as soon as we have confirmed results.

Thursday, June 16, 2005 7:10 AM CDT

Just a quick little update on Hannah.
She is doing really well. She's enjoying school tremendously. She has a "best friend", Elias. Her teacher's say they're inseperable. She's talking up a storm, and very articulate. Her eating could be better, but otherwise things are good. The potty training thing still hasn't taken off yet, but we keep trying. Sooner or later, it will.

Her mom took her to see Madagascar (which she can almost say perfectly). She really enjoyed it.
At dad's, we played in the sprinkler the other day. "Let's get wet, daddy!" It was such fun.

Her next MRI scan is on June 24. We probably won't get results till the following Monday. Please pray for no "spot".

PS- In case you missed it, Afleet Alex won the Belmont in stunning fashion. Coming up from the back of the pack, she made her move late and blasted to the front for the win. It really has given alot of exposure to Alex's Lemonade and pediatric cancer, and alot of money for research too!

Sunday, June 5, 2005 8:31 AM CDT

Hannah is doing well.
She started in a new class at her school last week. Her new teachers are Ms. Shannon & Ms. Robin. Even though the teachers are new to her, there are a couple of familiar faces from Ms. Francis' class. She seems to have adjusted really well to the whole thing. We are trying to work on potty training as well. Her eating is an up and down thing but it's improving, she's maintaining her weight.

Her MRI is scheduled for June 24 at 12:30p. Please pray that the "spot" is gone. She'll get blood work as well. She had a hearing test on Memorial Day, which came back good. No hearing loss! (except when the TV is on)

On a side note, Afleet Alex is racing in the Belmont, and favored. The owner of Afleet Alex, the winner of the Preakness, donates a percentage of the horse's winnings to pediatric cancer research. So root for Afleet Alex to win. It also gives some public awareness to the cause.

Thank you all for your continued prayers.

Thursday, May 26, 2005 10:40 AM CDT

Hannah continues to do very well. She is enjoying her time at school and making new friends. Her vocabulary and speech are really blossoming. She is full of energy and in good spirits.

I spoke with Dr. Wynn concerning her scans. So far, everything has come back clean with one exception. There was a small spot (9mm) found in the MRI of her brain. They're not sure exactly what it is, except that it appears ischemic (lack of blood flow). There is some concern and the plan is to have another MRI scan in a month to see if the spot changes. We are staying positive that it is not something bad. It is not in a place where previous disease was. We will need more information, thus the additional scan.

Please continue to pray for Hannah and all the other "Warriors".

Tuesday, May 24, 2005 7:15 AM CDT

Hannah had a great weekend. We went to visit GrandmaD in Gainesville. She had fun playing with the puppies and feeding Misty the horse. We went to GrandmaD's church on Sunday where everyone there who prays for her were so glad to see her looking so good.

I have not been able to talk with Dr. Wynn regarding her results. I will try again today. I'm sure if there were problems, I'd be getting a call very quickly. I will post again when I get confirmed results.

Please pray for GrandmaD. On Monday, her hip went out again (she had it replaced in Nov last year). She had to have surgery to put it back in. It's very painful and disheartening for her.

Thursday, May 19, 2005 6:26 PM CDT

Hannah had a full day today, but all went pretty well.
After a clinic visit, to be checked out by Dr. Wynn, we headed for the day hospital. Things were supposed to start at 11:30a, we were a little behind. She finally got sedated around 12:45p. They used a little gas to get her down, then started an IV. She came back from radiology about an hour later. Dr. Wynn came and did the marrow biopsy, which leaves her with two needle holes on her back/pelvis area, then an EKG and echocardiogram (ultrasound of the heart). (We were unable to get the hearing test done today.) So, then we just waited for her to wake up, which she did a little after 3p. A bit cranky but really not too bad.

When she arrived at the hospital today, she was wearing a cute tutu and her tiera. She was the princess/ballerina of the day. The staff all commented on how cute she was (we already knew that), and how well she looked. Most of them had not seen her since her hair has started back. The staff at St. Joe's are really great!

We hope to have some results tomorrow. I will try to update after I talk with Dr. Wynn.

Thank you all for your continued prayers for Hannah.

Wednesday, May 18, 2005 6:36 AM CDT

This is Hannah's second week back at pre-school. She seems to have adjusted pretty well. She very much enjoys having other children to play with. Her eating seems to be improving a bit. Her energy level is good.

Tomorrow is scan day, which always brings concern. Although we are positive all will come out clean, it's a reminder that I don't need. She will be seen at the clinic at 10:30a for a physical, then to the day hospital to have an IV line placed. Then she'll be sedated for her bone marrow aspiration. Then off to radiology for her MRI, CT, and skelatal survey. Back to the day hospital for the EKG, echo and possibly a hearing test. It will be a full day for her. Please remeber to say a prayer for her that all will go well with the sedation and that the results for all the tests are good.

Tuesday, May 10, 2005 9:15 PM CDT

Hannah went back to preschool yesterday. Her mom took her for her first day back. There was a little seperation anxiety on both parts. But she did ok the rest of the day (nap time was a little tough). So, she actually went to Ms. Francis' class. Ms. Francis was her teacher last year before all this hit. I'm sure her familiar face helped. Today when I went to pick her up, she really didn't want to leave her "new classroom", but we did. Her eating, at least while at school, is pretty slim. Hopefully, the routine of snack time and lunch time will kick in soon. I really think the interaction with kids her own age will be good for her. If we can just go for awhile before any "sicky" stuff, that would be nice.

Her next round of scans amd tests are next week on May 19. Please say a prayer for clean results.

Tuesday, May 3, 2005 6:51 AM CDT

Hannah had a clinic visit on Monday for counts. Her blood counts were all excellent; red blood=12.2, platelets=306, ANC=4000. All of her chemistry levels were good also.
Monday was also the LAST day of accutane, yeah! Her little face really took a beating on this cycle. We are all very glad to be done with accutane. Next, scans on May 19th. Please pray for clean scans and bone marrow.

Hannah will be going back to daycare on May 9. It will be a little scary (for me), but hopefully it will be ok. She's had a little bit of a runny nose for a couple of days, but no fever. And her immune system seems to be holding ok. Which is a good sign because we expect to see more of that kind of thing once she's back in school.

Otherwise, she continues to do well. Her spirits and energy are good. And her disposition is still unbelievably good (minus the occasional 2 yr old outburst). She's such a joy to be around.

Happy Mother's Day to all you Moms out there. Thanks for all you do.

Thursday, April 28, 2005 7:11 AM CDT

Hannah continues to do well. We are half way through the last accutane cycle. Her face is showing the dryness that we expect on accutane. Her sodium level came up a little bit, into the normal range. She will have a clinic visit on Monday, just for counts. Her scans are still scheduled for May 19. Her appetite is still spotty, but improving a bit.

There have been 2 more angels added to heaven this week: Mason Brown & Alexia Flory. Please pray for their families during this difficult time of loss. This NB monster just doesn't stop taking our children. So, please continue your prayers for Hannah and the other "warrior" children.

Tuesday, April 19, 2005 10:06 PM CDT

Hannah had a clinic visit on Monday, which meant a finger prick. All of her blood counts were excellent; ANC=1894, Red blood=13.1 and platelets=272. Her chemistry levels were also good, except that her sodium was a little low. So they told us to give her food with high sodium, like chips and such (junk food). Hopefully, her diet will bring it up some. They'll check her chemistry again on Thursday. All in all, her new marrow has done it's job extremely well. Praise God!

She started her LAST cycle of accutane Tuesday night. Hooray! Two more weeks and we should be done with accutane. I know she'll be glad not to have to take that yucky medicine any more. (It's not our favorite to give either.)

Her spirits have been good. She's displaying some typical toddler behavior, which is good in a way (I keep telling myself that it's good). Many children regress or even shutdown to some degree. Not Hannah. She is full of life and it's great to see. She overall has a wonderful disposition, except for the occasional 2yr old meltdown. It's amazing, considering all that she has experienced in the past year or so.

Thank you all for your continued prayers for Hannah and all the other "warrior" children.

Tuesday, April 5, 2005 10:02 PM CDT

Hannah had a clinic visit yesterday for blood work only.
Her counts all looked really good. Her red blood and platelet levels were in the normal range. Her ANC=1600, which is a little lower than we'd like it, but it's still ok. She finished her 5th round of accutane. She had a couple of nose bleeds during this round. The accutane dries out her nasal lining. She'll have 2 weeks off before her final round.

Her spirits and energy have been really good. Her eating is still pretty spotty, but she's maintaing her weight and her levels are good. So, I'm not complaining, although it would be nice to see her eat a little more.

She is talking quite a bit now and her vocabulary is expanding quickly. She tells stories to her stuffed animals. You have to know "Hannahese" to understand her sometimes, but that's just being 2.

Thank you all for your continued thoughts and prayers.

Tuesday, March 29, 2005 11:22 AM CST

We hope everyone had an enjoyable Easter weekend.
Hannah & Dad headed up to see GrandmaD. The weather wasn't too good, but it did stop raining long enough to do an egg hunt on Saturday at a new church. They had alot of games and things as well. On Sunday, we went to GrandmaD's church. The folks at Calvary have been praying very hard for Hannah and it was great for them to finally get to meet her. Afterwards, we had ham for Easter dinner (although Hannah didn't really eat any) and then another egg hunt at GrandmaD's house. After Hannah found all her eggs, she hid them again for Dad to find. It was alot of fun. I'll try to post some pics soon.
Hannah continues to do well. She is in the middle of her 5th round of accutane. Her face is starting to show the signs. Her eating has diminished, which is normal while she's on accutane. But she is maintaing her weight. At her last clinic visit, she weighed 30lbs and her blood counts are all in the normal range.
Her next scans are on May 19. Please continue to pray for her.

Wednesday, March 23, 2005 2:18 PM CST

Hannah had a clinic visit on Monday. Her blood count and chemistry levels were all good. She started her 5th cycle of accutane Monday evening.
She has been doing very well. She has good energy and spirits. She is eagerly awaiting the arrival of the Easter Bunny. We will be going to GrandmaD's for an egg hunt.
We are making arrangements for her to return to daycare in May. She will be returning to the same one she was in before. It's a little unsettling sending her back without her immunizations. But I think the interaction with children her own age will be good for her.
Her next round of scans will be on May 19th. Please keep that date in mind and continue to pray for her.

Saturday, March 12, 2005 1:12 PM CST

Today marks the 1 year anniversary of Hannah's diagnosis with neuroblastoma. Needless to say, it has been a year of emotional torture for us and physical for Hannah. One year ago, we were wondering if our precious little girl would live through the weekend. Today, we went to the park and played in the sun. God is Good!

In this journal, I've tried to chronicle the daily medical happenings and give report on Hannah's condition. I have purposefully omitted the fear, confusion, anger, frustration, and tears that I experience daily. I did so because this is a place for Hannah, for her spirit to inspire all of us to believe in miracles. Her journey is far from over and we must continue to be diligent in our prayers.

Saying "Thank you" for all your prayers, does not seem to be sufficient. I'm not sure what else to do. So, again, Thank you for your thoughts and prayers for Hannah, please continue them.

Many children battle this monster of NB. Many other children have different battles. They need our prayers too.

Wednesday, March 9, 2005 11:00 AM CST

Hannah has had a pretty good week.
She just finished her 4th round of accutane. So her face is quite dry & flakey. Her eating has improved somewhat, it's still not where it should be. Hopefully it will improve now that she's off the accutane for 2 weeks. And now that her central line is out, she only has to go for a clinic visit every 2 weeks (prior to starting accutane). Unfortunately, she will have to be "stuck" to get blood for her labs. Her next clinic visit is on March 21.
Otherwise, her spirits are strong, her energy is good, her disposition is good (considering the accutane). She continues to expand her vocabulary. She can almost say "stethescope", she already knows how to use one. Her hair continues to grow, it's about an inch or so now. She's growing up...and it's Great!

Unfortunately, this monstor continues to take victims. Please pray for the Becker family, last week they lost their son, Chris, to this disease. He fought hard for 6 long years and now he is free of pain. Please pray for the London family and their little girl, Penelope, who has just relapsed. She is about Hannah's age and was treated on the same protocol.

Please pray for these families as they endure these trying times.

Wednesday, March 2, 2005 10:07 AM CST

Hannah was discharged this morning about 10am. We went home "Tubie Free"!! She was very happy to be getting out of the hospital (as were we). Her sleeping schedule really got "out of whack" while we were in. Some of this is due to the accutane. Her appetite still needs to improve. But overall, she's doing well. Her face and lips are very dry, again from the accutane. She started her 4th cycle this past Monday. The cycle lasts 2 weeks, then only 2 more cycles. The site where her "tubies" came out looks very good. It is healing nicely. This means she can take a normal bath! Something she hasn't had in a year.

Yesterday was the 1 year anniversary of her 1st night in the hospital. If you remember, we first thought it was just an infection in her leg bone. About a week or so later, we found out that it was cancer. As I laid beside her in the hospital last night, I reflected on what a tough year it had been and all that she has endured. She has amazed me at every turn, and still does. Her spirit is as strong as ever. (I counted the number of nights she spent in the hospital last year...109, that's not counting clinic visits, scan days & radiation treatment.)

I want to sincerely thank all of you for keeping her, and us, her family, in your thoughts and prayers. Please continue to do so. Thank you and God Bless!

Saturday, February 26, 2005 4:31 PM CST

Saturday:

We received word from Dr. Rossbach Friday morning that all of Hannah's scans were CLEAN!!! Praises, Praises! I can't tell you the feeling of relief. Now, we just need to get this infection thing cleared up so we can get her home. The cultures they took Friday morning have come back negative, so far. They can change to positive with time, but we hope they don't. They woke her up early Saturday morning, 6a, because her peripheral IV wasn't working anymore. That meant we had to do another, while she was awake. I can tell you, those are no fun for anyone involved and especially Hannah. But we got it done so they could pull blood for labs and administer her antibiotics. In her amazing way, she quickly put all that behind her and we got to playin' and watchin' some Pooh!
She had a good day today. We got outside for a little bit, but it was a little wet. So we went to the playroom and we played some more. Then she took a long and much deserved nap.
We will know more on Monday about how long she will have to stay in the hospital. Hopefully she'll be coming home before the weekend.
Thank you for praying for her and please...please continue to do so.

Thursday, February 24, 2005 2:23 PM CST

Thursday:

Hannah had a full morning. We were down in MRI at 7:30a. She was done with her scans about 9a and brought to the Day Hospital. That is where her central line was removed and a peripheral IV placed. All went very smoothly, no complications. That's always a good thing. She awoke a bit grumpy (who wouldn't), but recovered pretty quickly. So now, we wait...for scan results. Hopefully, we will have them Friday morning. Please, Please Pray!
They have switched her antibiotic to one that is more targeted to the the strains of bacteria that have been identified. She had a reaction to it on the first dose. Her face swelled up pretty good. Some benedryl took care of that. They also added an anti-bacterial med. These will now go through her peripheral IV (her "new" tubie). She did ask "Where my tubie go?" after she realized they were gone. The central line worked beautifully for almost a year, we were very fortunate. It was time for it to go. We were talking about removing it after these scans anyway, this whole "infection" thing just forced our hand.
Hannah will be in the hospital for about another week so that they can administer the IV antibiotics (they won't send her home with a peripheral IV). Her spirits are strong. Her eating is spotty. Her face is starting to show signs of accutane. So all is about normal, as normal as can be while being inpatient.

Remember...Pray for clean scans!
PS- Happy Birthday to GrandmaD!!!
(I'd tell you her age, but there would be serious repercussions.)

Wednesday, February 23, 2005 11:12 AM CST

Wednesday:

Hannah is still inpatient. Yesterday, we received word that the cultures taken Monday morning had come back positive. The thinking is that her central line has become infected, which means it will have to come out. The cultures also showed another type of bacteria, so it looks like she's fighting a couple of things at once. She still hasn't had any fevers since Saturday, that's the good thing. Overall, she's in good spirits and playful. Her eating isn't all that good, that's a concern. She started her 4th cycle of accutane on Tuesday, the cycle will last 2 weeks.
Thursday morning, 7:30a, she will have all her scans; MRI, CT, skelatal survey. Then while she is recovering, they will pull her "tubies" out. I wonder what she'll think when she wakes up, she's had her "tubies" almost a year. Then they'll put in a peripheral IV, she will need to be on antibiotics for at least 7 days. Which means, being in the hospital another week, at least.
Please continue to pray for her and all the other children fighting cancer, everyday.

Sunday, February 20, 2005 5:36 PM CST

Sunday:

Hannah deveolped a low grade fever, (101F), on Friday afternoon. In our world, a low grade fever means a trip to the hospital. Hannah was admitted Friday around 6p. We weren't really sure if she needed to be in the hospital, but with her new immune system, we knew it was best to be safe. Once at the hospital, the usual routine for a fever: IV fluids, blood and urine cultures, and antibiotics. During Friday night, her temp got up to about 103F. Some Tylenol helped to bring it down. On Saturday, she only had a temp once during the early afternoon. As of Sunday, she had not had another spike.
The results of the blood cultures came in on Sunday. She has a bacterial infection, gram negative rod (the type of bacteria). The cause of the infection can't be known for sure, there's even the likliehood that it came from Hannah herself. So, at least we know what we're dealing with, we think. Her spirits are really pretty good (she was awake and "ready to go" at 5a Sunday morning!).We didn't quite know what to expect from her going back to "the old stompin' grounds", but as usual, she handled it all in stride.
We were reaquainted with the familiar faces of her caring nurses. We have been so fortunate, this is the first hospitalization since transplant. But I have to say, it's a bit weird being back on the cancer floor. Not as if I really needed one, but it's a true reminder of what we're facing.
They'll draw more cultures Monday morning, to see if the bacteria is still present after a couple of days of antibiotics. If her blood counts are good (which they should be), she'll start her 4th cycle of accutane Monday night. Her scans are still scheduled for Thursday, we'll probably being doing those as inpatient. Dr. Wynn seems to thing we'll be spending the week in the hospital.
Please continue to pray for Hannah, that her body overcomes this infection and that the scans are clear.

Tuesday, February 15, 2005 7:20 AM CST

Tuesday, Day 144:

Hannah had a clinic visit on Monday for a dressing change and blood work. All went well. Her numbers were very good, her ANC=3000. That's the highest that has been since transplant (without any help). Her red blood and platelet numbers were good also.

She is midway through the "off" period of her accutane. Her lips are still very chapped, and now her hands are "peeling". Lots of lotion. Otherwise, her disposition and energy are great. Her eating is still spotty, but she is up to 29.5lbs. She will start her next cycle (# 4), of accutane on Monday, the 21st. Then her scans on the 24th. Please remember to pray for her, especially on that day.

We went to visit GrandmaD and Pappy over the weekend. They both have birthdays this month. Hannah had fun feeding Misty the horse and watching Pappy feed all the birds. Unfortunately, Pappy just lost his (& Hannah's) favorite, PeeWee. So there was a bit of "loss" in the air. But she enjoyed the other dogs. The weather was great to be outside and she had a good time seeing all her uncle's and cousins too.

Wednesday, February 2, 2005 12:18 AM CST

Wednesday, Day 131:

Hannah had a clinic visit on Monday for a dressing change and blood work. Her blood counts came back good, although her ANC dropped to 1290. Sometimes the ANC will fluctuate a bit, plus her nose has been running, but no temp. So, that may affect it as well. Everything else was fine.
She is mid-way through her 3rd cycle of accutane. She's been handling it pretty well. Her face is a bit dry on her forehead, cheeks and lips. Her eating continues to be hit or miss. The accutane does affect the stomach, so we're glad she's eating anything. Her hair continues to grow, it's darker than before, but it's hair!
Not much else to report right now. She's doing well and is such fun and such an amazing girl. We have scans on the 24th, mark your calendar!
Again, I want to personally thank all of you who continue to think and pray for Hannah. She still has quite a way to go. But knowing that there are so many of you that have her in your hearts, it really does mean alot.
There are so many other children out there fighting this beast, they need your prayers too. If you're interested, you can go to www.beebo.info, and click on "Warriors" to see some of their stories.

Thursday, January 27, 2005 12:40 AM CST

Thursday, Day+125:

Hannah had a clinic visit on Monday. Her blood counts all looked very good. Her ANC=2900, her red blood and platelet counts were good as well. Her chemistry levels were good. So, she started her 3 cycle of Accutane. She will get 2 doses/day for the next two weeks. The accutane definetly dries out her skin, and her lips become chapped and crack. But other than that, we haven't noticed any other side effects. Her disposition and spirits remain good. She still has the occasional 2 yr old meltdown. She is happy and energetic. It's a joy to see.
After this cycle, she will have a series of MRI/CT scans and some other tests. The tests are currently scheduled for Feb. 24. Until then, we hope to continue on with little to report.
Please continue to keep her in your prayers.

Thursday, January 20, 2005 7:52 AM CST

Thursday, Day 118:

Hannah had a clinic visit on Monday for dressing change and blood counts. Her numbers were all good. Her ANC=2484, red blood=11.8, and platelets=189. These are all good, normal levels that show her marrow is doing it's job. All her chemistry/electrolyte levels looked good as well. The docs said we could stop giving her Acyclovir, an anti-viral med she's been on since transplant. So, now she's only taking Bactrim (3 days/wk), and Accutane (4 more cycles).

Her eating is still a bit hit or miss, but she's maintaining her weight pretty well. She's drinking plenty of milk, but not much else. We've tried to start weaning her from a bottle without much success. I think it's a comfort thing for her. We've also tried some potty training, which she doesn't seem to interested in. She probably would be more so if she had some "peers" her own age doing it also. We won't force it, for now. Her energy is really good and her spirit is strong.

We went for a visit to GrandmaD's house this past weekend. We fed Misty the horse, and helped Pappy feed his birds, and played with the dogs. She had lots of fun being outside in the "country". GrandmaD is doing OK with her hip. She has a brace she has to wear and her movements are limited. But her hip hasn't come out since before Christmas, so that's good. Thank you for your prayers for her.

That's about if for now. Hannah will start back on Accutane on Monday for 2 weeks. She has MRI/CT scans scheduled for February 24th. Please pray that those scans still look clean.

Tuesday, January 11, 2005 10:03 AM CST

Tuesday, Day +109:

Hannah had a clinic visit yesterday for blood work and a dressing change. Her numbers were all good. Her ANC came up a little bit and her red blood and platelet numbers were all in the normal range. Her chemistry and electrolyte levels were also good. She has finished her 2nd cycle of Accutane and so far has done well. Her face & lips do get very, very dry. Lots of lotion. Her eating is a bit spotty, Accutane can cause stomach irritability. But otherwise, she seems to be handling the med very well. Her energy level and spirits are really good. Some occasional moodiness, but not too bad. Her "fuzz" head is still coming in, quite a bit darker than her hair before.

Overall, she is doing really well. But please continue to pray for her, she still needs your prayers.

Thursday, January 6, 2005 3:14 PM CST

Thursday, Day+104:

Hannah has passed another milestone, Day +100!
Her marrow continues to show that it is doing it's job. Her clinic visit on Monday went well and she had good numbers. Her ANC had dropped a little, but nothing to get excited about. She also had a urine analysis done, which had good results as well. She is in the middle of her 2nd cycle of Accutane and doing well. It's still a challange getting the med into her, but we're learning.

Her "fuzz" is growing in nicely on her head. She may not be a blonde anymore, we'll have to wait and see. The chemo can cause the hair to come back different than it was before. Regardless, we're happy to see the "fuzz"!

We hope everyone had a good Holiday and wish everyone a Happy and Healthy New Year!!

Monday, December 27, 2004 2:04 PM CST

Monday, Day+94:

Hannah continues to do very well.
She had a clinic visit today and her blood counts look good. Her ANC=3600, which is about double what it was last week. Her red blood, platlet and chemistry levels all look real good.

Hannah spent the week before Christmas with her dad. We went to visit GrandmaD who got out of the hospital on Christmas Eve. She enjoyed feeding Misty the horse and seeing all of Pappy's birds. Of course, there were lots of presents to open. She was so much fun to watch as she got so excited about her gifts. She spent Christmas day with her mom and family.

Thank you all for your continuing prayers for Hannah.
We wish all of you a Happy and Safe Holiday.
Happy New Year!

Monday, December 20, 2004 10:10 PM CST

Monday Day+80:

Hannah has been doing great.
Her face has cleared up quickly since stopping the accutane. She is currently in the middle of her two week "off" period. She will start her next cycle on Monday. She had a clinic visit today for a dressing change and routine blood work. Her blood counts were good. Her ANC=1565, which is up a little from last week (without GCSF). Her marrow definetley seems to be doing it's job. We excpect that her ANC will slowly increase as time goes on.

She has been such fun lately. She's kinda got the whole Christmas/Santa Clause thing down. She recognizes Santa and reindeer and presents, but I don't think she's put it all together yet, maybe by Saturday! Her spirits and energy have been great and it's so good to see her having some fun.

We visited with some friends in Gainesville this past weekend. We also went to visit GrandmaD, who is still in a rehab hospital for her hip. She loved having Hannah come for a visit. The hospital was decorated very nicely and had a "dancing" Santa which Hannah liked alot. She even got GrandpaD dancing too! She got to feed Misty the horse and see the birds and Grandma & Grandpa Douglas'.

Please continue to pray for Hannah. That she remains well through this "cold & cough" season. Please pray for GrandmaD as well, that her hip will recover soon.

I trust that all of you are in the "throws" of the holiday season. Take time to reflect on the past year. I know for us, it has been a tough one. I've learned many things this year, alot of which I wish I never knew. But this much is clear, be thankful for every moment you have with your loved ones and live each moment in that light. For that time is what is truly important. Treasure each moment, for when it's gone, you cannot have it back.

We Thank all of you for your kindness and thoughtfulness throughout. But most of all, for your prayers for Hannah. We wish all of you a wonderful Christmas and truly blessed Holiday. Remember the reason for the Season...Christ's Birth.

MERRY CHRISTMAS!!!!

Tuesday, December 14, 2004 9:42 AM CST

Tuesday, Day 81:

Hannah is doing pretty well.
Her face has become a little "rough" looking from the Accutane. Her skin is peeling and she has a couple of spots and blotchiness. Hopefully, her skin will clear up in this 2 week "off" period. The liquid Accutane did work alot better, she still fights a bit. However, there are some concerns regarding the efficacy of Accutane in a solution. We are trying to decide exactly what to do for the next cycle.

She had a clinic visit on Monday. Her counts were good. Her ANC=1300 which is where it was last week. So, it's holding, that's good. We were hoping to see it increase some, but at least it's not going down.

She had a good weekend. We went to Hyde Park to see Santa, but we missed him. Guess he had to get back to the North Pole. We'll try again. So we listened to some music and walked around the area, taking in the sights.

I'd like to send a "Thank You" to Ms. Gina. She organized a "Casino Night" fundraiser at her house. The event raised $500, which will be donated to "Lunch for Life". This fund raises money for research on Neuroblastoma.

Please continue to pray for GrandmaD. She is currently in a rehab hospital for her hip. She is also having some pain in her hand, which we think is from the first surgery. We hope that she will be out for Christmas, but won't know that for sure. She is a very active lady and not used to being confined to bed. So, please pray that her hip heals and her hand stops giving her pain.

On a sad note, we just found out that one of the little boys, Jacob Duckworth, that we know from St. Joes, has relapsed. He has a very, very rare type of cancer. He and his family, needs your prayers. Please visit his website, www.jacobduckworth.com, and leave a note of encouragement for them.

PS - I do have some nice pics, I will try to post them soon.

Wednesday, December 8, 2004 3:54 PM CST

Wednesday, Day+75:

Hannah continues to do well.
She had a clinic visit on Monday. Her counts looked good. Her ANC=1368, which is a little low, but she had been off GCSF for a week. We are going to keep her off it and see if her counts come up on their own. Otherwise, all her numbers were good, including her chemistry levels. She continues to do pretty well eating and drinking on her own. She has a cute "fuzz" on her head which continues to grow. Her disposition and energy have been good.

It has been challenging (to say the least), getting her Accutane dosage into her. As I thought, she caught on to the old "hiding it in the food" thing pretty quickly. We don't want her to stop eating because she's suspicious either. We've even had to hold her down and be forceful, which is something that is not pleasant for all parties involved. Her mom found a pharmacy that would put the Accutane in a liquid form. We are hoping when we get it, that it will make things much easier. It's important for her to get the full dosage each day. I'll let you know how that goes.

Last Wednesday, we attended the Holiday Party put on by the Children's Cancer Center. It was very nice. Hannah got to see Santa Clause, which she liked. She had no interest in sitting on his lap though. Thanks again to the Center for a great event all the kids enjoyed.

On a side note, GrandmaD has had some complications from her hip surgery. Her replacement hip has "popped" out twice now. The last time required another surgery to put it back in. She should be going home from the hospital today. Please say a prayer for her recovery.

Tuesday, November 30, 2004 9:45 PM CST

Wednesday, Day 67:

Sorry I haven't posted in awhile. We hope everyone had a good Thanksgiving holiday. Hannah spent Thanksgiving with her dad and GrandmaD and family in Gainesville. She fell asleep right at dinner time. But she had fun seeing Misty the horse and the birds and dogs (especially Pee-Wee)at GrandmaD's. Please pray for GrandmaD. She had hip replacement surgery on Nov. 16th. She is recovering pretty well, but is still having some pain and moving pretty slow.

We returned to Tampa Friday evening and were honored to be part of the Battle of the Badges. It is a charity football game between the Tampa police & fire departments to raise money for the Children's Cancer Center. Hannah got to ride on a firetruck. She had a great time.

Hannah had a clinic visit on Monday for blood counts and a dressing change. Her counts were very good: Red blood 11.2, platelets 165, and ANC 15,000. Monday was also the start of her Accutane treatment. We talked with Dr. Wynn about what to expect; rashes, nausea, aggresivness. The Accutane only comes in gel capsules which they recommend to take whole. Every try to get a 2 year old to swallow a pill? Her dosage requires 2 pills in the morning and evening for 14 days, then 14 days off. This cycle will repeat for 6 months. We know we will have to be creative. So far, it seems that hiding the pills in food seems to be working. But I expect that she will catch onto that soon. It will be a challenge to make sure she gets each dose.

Overall, she is still doing very well. Good energy and good spirits. She's been very playful. She's also talking quite a bit now. She also has some "fuzz" on her head and her eyelashes are coming in. It's been a blessing to see her being "normal". We still have a long way to go but we're staying positive.

Once again, Thank you all for your thoughts and prayers. Please continue to pray for Hannah and all the "Warrior" children.
PS-Hannah has been added to a website that has alot of NB Warriors. If you'd like to check it out, www.beebo.info.

Wednesday, November 24, 2004 9:11 AM CST

Wednesday, Day+61:

Hannah has had a good week thus far.
The results from her kidney function test were good, 110ml/hr. She had a clinic visit on Monday for blood work and a dressing change. After that, we went to meet some policemen and firemen. Tampa's finest raise money for the Children's Cancer Center. It was so exciting, Hannah fell asleep. She did get to see the firetruck though. There was some press there at the station house, to announce their fundraising efforts.

We have decided not to participate in the monoclonal antibody trial. It was the most difficult decision thus far. But we felt that with Hannah being NED and relatively healthy despite all she's been through balanced against some very intense treatment with no known benefit, that we will do the Accutane only for 6 months. We feel that the Lord's Hand is on Hannah and that she is a strong spirit. We don't want to break that spirit. We pray that we've made the right decision for her.

We hope that all of you have a very Happy Thanksgiving. We all have so much to be thankful for in this Great country. Enjoy the time with family and friends, for that is what is important in this life. We Thank God for His blessings on our precious little girl and pray that His Healing Hand will stay on her and all the other "warrior" children.

Friday, November 19, 2004 9:25 AM CST

Friday Day+56:

PRAISES!!!PRAISES!!!PRAISES!!!

Yesterday we received "official" confirmation that Hannah is NED (NO Evidence of Disease) and is in Remission!!!
I spoke with Dr. Rossbach about the results of her scans. Her CT, MR, skelatal survey, bone marrow aspiration, EKG, echocardiogram, all came back CLEAN and normal. We are still waiting on the results of the kidney function test she had done yesterday. But that is a "function" thing, not a "disease" thing. And we expect it to be normal too. This is WONDERFUL news and proof that the Lord is answering all the prayers for her. Thank you all so much for your prayers and concerns and thoughts. She still has more to do, so please continue to pray for her.

We are looking forward to a great weekend having this news in hand. We are truly blessed to have her as healthy as she is and know that she is a special gift.

I have to run but will post more later.

Tuesday, November 16, 2004 10:38 PM CST

Tuesday, Day+53:

Hannah had her last radiation treatment today. Praises!!!
We are so thankful that she did not have any severe side effects from the treatment. And also that she made it through all the sedations so well (aside from being a bit cranky waking up). Again, the Lord has answered our prayers.

Her ANC dropped down as expected (918), so she got a shot of GCSF today. Her other blood levels look really good. We will be alternating her TPN to wean her off. Probably for about a week or so. It will depend on how her appetite comes back.

We did get some preliminary results back from her CT/MRI. They did not show any new spots of disease. There was some "enhancement" in some areas, but it's the same areas of her previous disease. What does that really mean? Well, it's likely due to "scarring" in the marrow from her previous disease. However, it's not known for certain if there may be "residual" disease. We have to wait and see what the results of the bone marrow aspiration show. It's still positive news that there appears to be no progression.
On Thursday, we will go to All Children's Hospital in St. Petersburg for her last test (of this series), her GFR. This test will evaluate her kidney function. She will have to be "stuck" for the injection of an isotope. Then there will be a series of blood draws at certain time intervals. Those draws will be through her central line, that's a good thing. The process will take a few hours. But she will be allowed to leave the hospital, so hopefully we'll find something fun to do to pass the time.

Please continue to pray for clean results from the aspiration and good kidney function results. And don't forget to say a prayer for ALL the children fighting disease. There are way too many of them.

Tuesday, November 16, 2004 3:26 AM CST

Monday Day 52:

Hannah had a full morning today.
We were at the hospital at 8:30a for sedation. First thing was a skelatal survey (an x-ray of her entire body), then to radiation therapy. After radiation, Dr. Rossbach performed a bone marrow aspiration. This is where they take bone marrow from her pelvic bone (2 places), and send it to the lab to look for NB cells. She woke up from sedation fairly well. She was on her way home at 11:30a.

Her blood count levels were ok. Her ANC dropped down again, because she's not on the GCSF. We'll probably start that again on Tuesday. Speaking of Tuesday, that is her last day of radiation, Hooray! Even though the girls in radiation are sad she won't be coming back, we are quite happy. We promised to stop in and see them when we have clinic visits. We are going to start weaning her off TPN by alternating nights she's on it. Her appetite and drinking have been spotty at best. We have to keep her electrolyte levels stable as well as guard against dehydration. We hope we won't have to continue the TPN for too long.

Some fun news! On Sunday, we went to a Fall Festival sponsored by the Children's Cancer Center. It was held at Granma'a Hug-N-Farm (Thanks Granma!) Hannah had a blast seeing all the animals and getting up close. She absolutely loved to ride the pony, 4 times!!! She also got to hold a baby bunny, see some pigs and goats and sheep and chickens and ....just run and play. It was good to see her having fun. I'll post some pics soon. Thanks to Children's Cancer Center, Granma, and the Junior Leage of Tampa. They put on a great event that all the kids loved.

We are still waiting for some of her scan results. We will meet with Dr. Rossbach this week to go over them all. As well as discuss where we go from here. Please pray that all her scans are clear and that we make the right choices for her treatment.

Saturday, November 13, 2004 7:04 AM CST

Saturday, Day+50:

Hannah has had a full week, to say the least.
There was a scheduling mix-up on Wednesday, so she did not get her skelatal survey done. That was a frustrating day. She did get her radiation treatment as scheduled. On Thursday, we got to the hospital at 7:30a. She had a CT scan, then an MRI scan and then her radiation treatment. While she was still sedated, they did an EKG and an echocardiogram (heart tests). We hope to get the results from all those on Monday. Also on Monday, she will have the skelatal survey, radiation, and a bone marrow aspiration. So, Monday will be a full day too. Her week finished on Friday with radiation and a hearing test. The hearing test showed some high frequency loss, so they want us to do another test the beginning of December to see if the loss is increasing or not. Please pray that it doesn't. That was her week. She is still handling the radiation very well, with no nausea or diareha. Her energy level is quite good. Although, the sedations in the morning have thrown of her napping schedule.
We will be meeting with Dr. Rossbach late in the week to go over all the test results and make a plan to go forward. We have a big decision to make at this point regarding treatment, whether or not to participate in a trial where she may, or may not, receive monoclonal antibodies. This is a relatively unproven treatment, in terms of long term survival, for neuroblastoma. Please pray for Hannah and pray that God leads us to the right decision for her.

Wednesday, November 10, 2004 8:42 AM CST

Wednesday, Day+45:

Hannah will have her 8th radiation treatment today.
She has really handled the treatment well, so far.
Her ANC count was a little low on Monday, so we'll restart the GCSF. Her red blood and platelet counts were good. Her potassium level was a little low, so after some discussions, we got her TPN adjusted with extra potassium so we didn't have to give it to her by mouth. In addition to radiation today, she will also have a skelatal survey done. Tomorrow morning, she will have her CT & MRI done before radiation. Throw in an EKG, echo, and hearing test somewhere, and that does it for this week. Next week, she's scheduled for her last 2 days of radiation. In addition, Monday she'll have a bone marrow aspiration and possibly Wednesday she'll have a GFR (kidney function). They don't do this particular GFR at St. Joe's, so we'll have to go to either Tampa General or All Children's to get it done. Our little girl has a pretty full schedule for the next week. Keep in mind that most all of these tests require her to be sedated. That's why we tried to put them in conjunction with the radiation, while she was already sedated.

Please pray that all the scans and tests go well, and most importantly, that the results are all good. We hope to have some of the results by the end of the week.

Friday, November 5, 2004 10:20 PM CST

Friday, Day 42:

Hannah finished up her first week of radiation therapy today. She has handled all of the sedations pretty well. The treatment itself is very short, 45 seconds, most of the time is getting her under and positioned and then recovered. It's seems to be averaging about an hour and a half to two hours total time. Putting her back on the TPN really seemed to help her in the mornings. Even on the TPN, she has a small appetite in the evening. Her blood counts were pretty good today; ANC=14000, Red blood = 8.7, and platelets =134. We stopped the GCSF because her ANC is pretty high. We'll have to see how her body can hold it. Usually it will drop back down a bit and the radiation also affects the ANC. Overall, she has done extremely well with the radiation. However, the effects of the radiation are cumulative and we might see more of them towards the end and after the treatments.

Next week, in addition to the radiation treatments, she will have a full workup of scans and tests. That means CT, MRI, skelatal survey, bone marrow aspiration, hearing, EKG, echocardiogram...the works. Hopefully, we will be able to schedule one test per day of radiation, because she will already be sedated. Scheduling it that way can be quite difficult. We always have apprehension prior to scan time, but feel positive that they will all come back clean.

Please continue to pray for Hannah. Pray for no effects from the radiation and pray for CLEAN scans.

PS-I've posted some new pics in the link above the journal.

Monday, November 1, 2004 4:42 PM CST

Monday, Day+38:

Hannah had her first radiation treatment today.
Before her treatment, she had a rough morning (Mom too). Hannah woke up pretty early, about 5a, and because of sedation, mom couldn't give her anything to eat. She was NOT happy. It must be so confusing to her. We try so hard to get her to eat and then, "No..you can't eat". By the time she got to clinic at 10:30a, she had calmed down some. We met with Dr. Caulkin before her treatment to go over her treatment plan. We got some disappointing news from her. Because of where they had to radiate, a portion of her spine would be in the field. The radiation will probably cause those vertabrae not to grow the same as the rest. Meaning, she will probably be shorter, because of this radiation, than she otherwise would have been. We don't know exactly how much shorter, probably an inch or two. This took us a bit off-gaurd. We had discussed this possibility at the initial consult, but thought that we would not have to do the spine area. So, please pray that the radiation effects will not affect her spine. The treatment itself went smoothly and she recovered from the sedation well. We decided to start her back on the TPN (IV nutrients) to help get her through the mornings, not being able eat before sedations.
Her blood counts were ok today, although her ANC was only 1000, so she will start back on the GCSF to pump it back up. Her red blood and platelets were good.

Now that all that is out of the way...she had a good weekend at dad's house. Grandma D came down to visit and we went to the zoo on Saturday and the beach on Sunday. She was a "witch" for Halloween and went trick or treating with her mom and grandparents. She had a good time although she was a bit leery of the pumpkins and some of the costumes were a little scary for her. She liked just "observing" all the goings - on.

Her treatment on Tuesday is at 11:30a. We hope the TPN will help her have a better morning. Please continue to pray for our little "warrior". I feel she's going to have a rough week but expect her to "push through". Also, please pray for mom and dad, we don't know what to expect with radiation, or it's effects.

Monday, October 25, 2004 11:30 PM CDT

Monday, Day 31:

Hannah had a clinic visit today. Her counts were good. Her ANC=16000, Red blood 9.2, platelets 173, these are all good levels. Her ANC is "inflated" due to the GCSF shots she's been getting since Thursday. Those were stopped today and we'll see how her immune system will react on it's own. Amazingly, she has not needed ANY transfusions since being discharged from Shands. Her "new" marrow seems to be doing very well.
After her clinic visit, she had a CT done. This was to plan her radiation therapy which will start on Monday, Nov 1. During this CT, they also made a mold around her while she laid on her back. This will help ensure that she is in the same exact position each time she has radiation. They also put several "t" marks on her belly which helps with positioning. The radiaion therapy is a very focused beam of radiation directed at a precise field. In Hannah's case, it will be directed to where her tumor was removed. Most relapses occur at the original site. Radiation therapy has shown effectiveness in preventing those types of relapses. Again, this will be 12 consecutive treatments (M-F), each requiring sedation. The therapy itself will last for under a minute. Most of the time will be spent putting her under and then recovering her.
Her next clinic visit is on Thursday. We are hoping to be able to do something with her on Halloween. It's a bit difficult though, trying to pick something to do where she won't be around alot of people. We still have to be very careful about exposing her to germs and other bad stuff (especially with flu season upon us).
She has been doing real well with eating and drinking. We're hoping that Tuesday night will be her last day on TPN. We're also hoping that the nausea effects of radiation therapy don't cause her to stop eating/drinking.
Please continue to pray for Hannah. The Lord is answering!

Thursday, October 21, 2004 10:57 PM CDT

Thursday, Day +28:

Hannah continues to do well. Her eating and drinking are improving. We are now alternating nights on her TPN. We'll probably do that for a week and if she continues to do well, we hope to stop it then. We don't know how the radiation therapy will affect her desire to eat or drink. So, we'll have to play that by ear.

She had a clinic visit on Wednesday and got a dressing change. Her red blood and platelet counts were good. Her ANC dropped down to 1000 (it was 3000 on her last clinic visit). So, she'll start back on the GCSF (daily shots) to bring her ANC up. We also met with the radiation oncologist on Wednesday, Dr. Caulkin. She seemed very concerned with getting the right information to make a treatment plan to radiate only the area(s) needed. Regarding which, I spoke with her today and only the area where the primary tumor was, will be radiated. She will have 12 treatments, one per day (M-F), each requiring sedation. On Monday, she will have a CT (another sedation) of her kidney, which will be used to plan the radiation. The planning takes a couple of days, so her treatment will probably start toward the end of the week.

Please continue to pray for her strength during the radiation treatments. I also ask you to pray for the many children who are also fighting this beast. Unfortunately, I have been hearing of many who have relapsed recently. The children, and their families, need your prayers too.

Tuesday, October 19, 2004 8:20 PM CDT

Tuesday, Day +25:

Hannah has been doing wonderful. She's been home for a little over a week. I think she's happy to be here, I know we are! She is still on TPN, but her eating and drinking are steadily improving and we have hopes of trying to wean her off. We'll talk to the docs about that on Wednesday. She spent the past weekend at her dad's. We got outside to enjoy the beautiful weather. Went to the park for a little bit. Her energy is pretty good and her spirits seem high. In the past month or so, her vocabulary has really picked up. She's putting 3-4 words together now and trying to repeat whatever we say. It's sooo good to have her home.

Wednesday morning we will meet with her radiation oncologist to discuss the radiation therapy. That therapy will probably start in the next 2 weeks or so. It will entail about 2 weeks of daily treatments, all of which she will have to be sedated for. That's always a concern. They will be radiating where her primary tumor "was", basically on top of her kidney. Radiation therapy can have some nasty side effects. We are hopeful that with the dosage and relatively low number of treatments, that these side effects will be minimal.

Hannah has just done amazingly well through ALL of this and we know that it's because of all the prayers offered in her name from ALL her Helpers. Thank you so much for that and for your overall concern for our little angel.

Tuesday, October 12, 2004 10:22 PM CDT

Tuesday, Day +18:

Hannah is HOME! Her Mom brought her home from Gainesville today about 2:30p. She definetely appears to be glad to be home in familiar surroundings. She will still be on her TPN (IV nutrients) for a little while. She is having some nausea, usually a little while after she eats. Really, not that bad considering. Dr. Staba said it may take awhile for her stomach to begin acting normal. She has a clinic visit
at St. Joe's Wednesday morning to check her blood counts. She'll get to see the "old gang". We expect all to be normal, and will be monitoring her ANC very closely. She should be getting a bit of a break till radiation starts, probably about 2-3 weeks. We have to discuss all that with the docs here in Tampa. But she is doing pretty well, her spirits and energy are good. And it's heartwarming to see her come back to her "old" self. She's smiling and laughing like nothing's happened...she's a warrior. I've posted some new pics, from our time in Gainesville if you'd like to look, click the link above this journal.
Prayers do work, Hannah is proof. Keep praying, she still has many battles ahead.

Monday, October 11, 2004 4:13 PM CDT

Monday, Day 17:

God is Great! More wonderful news about Hannah. She'll be coming home to Tampa on Tuesday! She had a clinic visit this morning and her blood counts were very good. Her platelet and red blood numbers are coming up faster than expected, no transfusions needed. So, Dr. Staba checked her out this afternoon and said she could come home! She will still be on TPN as she hasn't been able to keep any food down. On Wednesday, she'll go see Dr. Rossbach in Tampa and get a clinic visit in as well. Then we'll talk about radiation and such.
Praises!!! Praises!!! Praises!!! God is Great!
Thanks for all the prayers and support.

Friday, October 8, 2004 3:58 PM CDT

Friday, Day 14:

Praises!!! Praises!!! Praises!!!
Hannah was discharged around 12:30p today. We spent the morning packing up all her stuff, which required a few trips to the car. Her blood counts were good. She will stay in Gainesville for a week or two for follow-up clinic visits. She'll still be getting TPN (IV nutrients) for a few days at home and hopefully her appetite will come back so we can stop the TPN. She has tried to eat a couple of times, but it comes right back up. It may take a little bit for her stomach to come back "online". She'll also be getting an anti-viral medication. Regardless, we are thrilled to have her "home".

God's Healing power is Great! It's simply amazing that Hannah was released only 14 days after transplant. We are so happy that she handled everything so well. Please keep her in your prayers as she continues her recovery.

Thursday, October 7, 2004 1:00 PM CDT

Thursday, Day+13:
Hannah is doing very well. She's totally off morphine now. She's swallowing just fine, and talking too. She's tried a sip or two to drink. Her spirits have been good. Her energy is still a bit low. But overall, she's happy and playful. Later today, she'll be off the IV pole for a couple of hours and we hope to get her outside in the sunshine. Something she hasn't been able to do for almost a month. Everything is still on track for her to be discharged tomorrow. Her counts are doing well and the mucositis appears to be pretty much gone.
She has done amazingly well through transplant. She has surpassed all expectations. God is Great! Again, we Thank all of you for your prayers and cards and gifts. Hannah is blessed by all the love that showers her.
I wish I could say this was the finale. But she will still be receiving different treatments for another 6 months or so. After she returns to Tampa, she will have radiation therapy. Then she will start additional treatment on an outpatient basis. Please pray for our discernment in deciding what treatment plan to pursue.

Thanks again and Praises, Praises!

Wednesday, October 6, 2004 8:30 AM CDT

Wednesday, Day+12:
Hannah had a pretty good day yesterday. She played quite a bit through the day. She did get another platelet transfusion. Her spirits seemed pretty good. We dropped the morphine down to .1 and last night we stopped the drip. She woke up this morning in a good mood. But shortly after, she had a little episode spitting up all the drool she's been holding on to. She's swallowing just a little though. Still no eating or drinking. Her ANC=1100 which is great, her platelets and red blood seem to be holding ok. Today they will be discontinuing some of her antibiotic meds.

If there are no temps or other complications, the docs are planning to discharge her on Friday (Day +14). No one expected her to recover this quickly, it's pretty much unheard of. This is incredible!!! Praises, Praises!!! All the staff is amazed at how well she has handled everything. Even though she will stay in Gainesville for a week or two for clinic visits, she won't be in the hospital.

I can't tell you how thankful and grateful we are that the Lord has answered our many prayers. We know that it His Hand that is responsible for her amazing strength and recovery. We Thank Him and praise His Greatness.

Tuesday, October 5, 2004 9:33 AM CDT

Tuesday, Day +11:
Hannah continues to improve. Her ANC=280 this morning. We've lowered her morphine to .2 because the mucositis seems to be getting better. She is starting to swallow a little bit, sometimes enough to speak a word or two. One of her antibiotics has been discontinued. Her spirits have seemed to improve as well. She had another fever-free day yesterday. She really seems to be coming around quite well. We pray her improvement continues over the next few days. The doctors and staff are very happy with her recovery so far. If her recovery continues to go well, she may be discharged alot sooner than anyone expected. This of course, depends on her counts. She will still have to stay in Gainesville a week or two for daily clinic visits to monitor her blood counts.

We praise God for His healing Hand on Hannah. Your prayers are being answered as Hannah continues her fight.

Monday, October 4, 2004 8:55 AM CDT

Monday, Day 10:
Hannah had an ok weekend. A little improvement each day. Saturday was a little rough, she had a temp or two and a nose bleed and a couple of transfusions. She is still a bit moody from the morphine and still has some "moments". Sunday was a little better. She didn't have any temps and as of this morning, has not had a temp in 24hrs. Her labs came back this morning with an ANC=60! Which means that she's started to engraft! It's not much of an ANC, but we pray that it will continue to rise. As it does, the mucositis should clear up and we will try to start weaning her off the morphine. She will still get some transfusions, especially platelets, for awhile.
Her ANC coming up is wonderful news and although it doesn't mean she's totally out of the woods, it does signal that she's starting to recover. She will still be in the hospital until her ANC is >500 for a few days and her tranfusion needs aren't so demanding (1-2 weeks?).
Again, the Lord has answered our many prayers. We thank all of you for your thoughts and prayers and we know that's what is responsible. Keep the cards coming (hospital address on main page), Hannah really does enjoy looking at them!

Thursday, September 30, 2004 7:58 PM CDT

Thursday, Day 6:
Hannah had a decent nites sleep and a little better day today. She received a platelet transfusion about 2am and another about 11am and a red blood transfusion about 6p. Her fevers cause her body to "eat up" platelets and since she doesn't yet have her marrow to make more, they must be replaced via transfusions. She will be receiving many, probably almost daily, transfusions until her marrow starts producing blood cells. She still had some fevers today, but they were not quite as high as the past couple of days. She actually had better energy today. She got out of bed and played quite a bit, with her puzzles and doll house and stickers. Her mucositis is still a problem. She is constantly drooling because she doesn't want to swallow. Sometimes, she has so much drool in her mouth it makes her cough and it all comes out and it is very painful for her. She is still on a constant morphine drip, which makes her a bit irritable (along with all the other things) and the TPN (IV nutrients) as well as several other daily medications including 2 antibiotics, an anti-viral, an anti-fungal, GCSF (helps with white blood cells). She's also been getting a phosphorus bolus to help her electrolytes. She has 6 IV pumps on her pole and sometimes they are all running with something. We are told all of this is "normal" with a stem cell transplant and Dr. Staba is plesed with her progress. We are actually grateful that the effects have not been worse, because it could be much worse. She really has not had much nausea, which would make the mucositis more painful. She has had some diareha, but not too bad. So really, she's doing pretty well, considering, but it's still hard to see her in pain.

We appreciate all the prayers offered up in her name. Please continue praying, she needs all of them.

Wednesday, September 29, 2004 8:54 PM CDT

Wednesday, Day +5:
Hannah has had a rough couple of days. She continues to have fevers, last night she topped out at 103. She also has some mucositis (sores in her mouth). Like the last time, she is not swallowing, so she holds all her drool in her mouth and cheeks. This also makes giving her Tylenol by mouth (for the fevers), very unpleasant for her. We had to increase her morphine drip to make her comfortable. She's spent most of the past 2 days in bed, watching Pooh videos (Thank God for Pooh!). She will probably be receiving blood and platelet transfusions tonite. When Dr. Staba stopped by this afternoon, she said Hannah was doing "well", meaning that what she is experiencing is normal. You know it's a screwed up world when fevers and a morphine drip is doing "well". Anyway, she said she expects Hannah will have fevers and mucositis until her counts start to come up. We're not exactly sure how long that will be, could be a week or so. So we wait, and try to keep her comfortable, and try to stay positive and not freak out. It is so hard to see her feeling so bad. We just pray that this "phase" will pass soon.
Thanks to all who have sent cards and pics. We've started plastering the wall in Hannah's room with them.

Hurricane Jeanne Update:
Hannah's mom was able to asses the damage on her house today. The tree caused minimal damage. Thanks to "Pop-Pop" for helping her cut up the tree.
Many people in the Gainesville area are still without power, including GrandmaD. Hopefully it will be restored soon.

Tuesday, September 28, 2004 9:17 AM CDT

Sunday, Day +2: Hannah started getting some of the effects today. She spiked a temp of 102.5 but it came down with some Tylenol. They drew cultures and started antibiotics. We had to give her some morphine because the mucositis started in her mouth. She also received a platelet transfusion, which will probably be the first of many. She perked up a little after the Tylenol and actually played for an hour or so, but spent the majority of the day in bed watching videos.

Monday, Day +3: Hannah had another fever in the morning, around 102. She fell asleep around noon after some Tylenol and Benydryl. She received a red blood transfusion while sleeping. She felt a bit better in the afternoon. We actually went out of her room and played a little kickball in the hall and went for a wagon ride. She spiked another fever around 2am. We gave her some more morphine because she wasn't sleeping well, very restless, it seemed to help. After receiving another platelet transfusion (at 4am), she had a reaction called riekering, basically shaking very bad. It was quite scary, but she calmed down after some demeral. But she was awake for quite a bit afterwards. She did not get a good nights sleep.

Tuesday, Day +4: Hannah woke up feeling pretty bad. We decided to put her on a morphine drip for the pain caused by the sores in her mouth. She also had a low grade fever. Because of her mouth sores, she is not happy when we try to give her meds by mouth (such as Tylenol). It's a bit traumatizing and sometimes, because she's so upset, she brings it back up, which means we have try to give another dose. We'll have to see how the day goes.

So we're starting to see some of the expected effects of the chemo and zero immune system. She is generally feeling pretty crappy. But she still is handling it all like a "warrior". Please pray that these effects pass quickly and do not get any more severe. The next few days will be rough for her.

Hurricane Jeanne Update: The Gainesville area got quite a bit of wind and rain. Power was out all over the place, but the hospital was fine. On Sunday, Hannah's mom found out that part of her house was hit by a tree. She will be heading down to assess the damage on Wednesday. Please pray the damage is limited. It's something no one wants to deal with, especially with a sick child in the hospital.

Sunday, September 26, 2004 8:19 AM CDT

Friday, Day 0 - Transplant Day:
Hannah's stem cell infusion went smoothly and was uneventful, which is a good thing. It started shortly after 4p and was done by 5p. She was a bit cranky at first, since we had woken her from her nap, but she calmed down as soon as Pooh was on TV. She had no signs of reaction, her blood pressure remained stable throughout. Shortly after the infusion, she was playing with her new doll house (which was graciously provided by Naomi in Child Life). She has had some nausea and diareha, but not really as much as expected.

Saturday, Day +1: Hannah continues to do extremely well. She had good energy today, walking the halls and kicking her ball. I do think she feels a bit "achey" all over. But overall, good spirits and playful. Her ANC=200, so her counts are dropping rapidly. When her ANC=0, she will be at the greatest risk of mucositis, fevers and infections. We're thinking that will be Monday or so. And will last, 10-14 days or so. But so far, she is doing well better than expectations. Pray that continues, she still has rough days ahead.

Hurricane Jeane Update: I'm writing this on Sunday am, and it looks like Jeane is headed in the general direction of Gainesville. Right now, it's a bit windy but not bad. Hopefully it will weaken as it moves north. So, again, we're in our "shelter" during another storm.

Thursday, September 23, 2004 9:53 PM CDT

Thursday, Day -1: Hannah continues to do well. She has had very minor nausea. Her spirits and energy are good. She didn't really eat anything today until this evening, when she ate some noodles, which immediately came back up. She will probably start on TPN (IV nutrients) on Friday or Saturday if her eating and drinking don't improve. This was expected. She should get her stem cell infusion on Friday around 4p. Her blood counts have actually held pretty good, but we expect them to drop pretty quickly in the next couple of days. Then the "fun" begins. Stay tuned.

Tuesday, September 21, 2004 9:59 PM CDT

Tuesday, Day -3: Hannah finished her chemo about 3:30p today. She has tolerated the chemo extremely well, with no nausea. Her appetite has diminished markedly, but she did eat a hot dog and drank some milk today. She maintains her playful spirit. She has a little "tent" in her room, which is helpful when we play "hide". We had a breakthrough on the mask thing! Last night she put on the mask while coloring, so then we walked the halls and showed off wearing our mask. We had 2 ventures outside the room today. I won't say it's her favorite thing, but I think she realizes that if she wants to go out of the room, she has to have a mask. It's about proper motivation.
So, she'll get a break for the next couple of days to rest. The plan is to have her stem cell infusion on Friday around 4p. The process itself is a bit anti-climactic. Her stem cells will be infused into her central line just like the chemo and other drugs. It will take about an hour and a half to complete. Then it's kind of a long waiting game. Waiting to see what effects the chemo will bring and waiting for engraftment (for her counts to start to rise). From Friday on, for the next couple of weeks, things will be touchy. She will have absolutely NO immune system. This is why she's in a special room and unit where many precautions are taken to avoid infection of any kind. During this time, she will need many transfusions, she might get a fever or two, probably will have diareha. Our main concern is the mucositis and fevers. It will be a difficult time for her. But we pray, and are hopeful, that the effects will be minimal and that they will pass quickly. Helpers, gear up those prayers! This is it.

Thanks to all who have come and visited, those that have called, those that are praying and sending positive thoughts.

Monday, September 20, 2004 9:20 AM CDT

Monday; Day -4: Hannah is doing very well while receiving her chemo. As of now, she has not had any nausea since starting the chemo on Friday. This is a bit surprising, but also encouraging. Her spirits continue to be pretty good but she is starting to tire easily. She has been sleeping well at night (even through the staff visits). Her appetite has been dwindling and this morning she only had a couple bites of an apple but no milk (which is unusual for her). Her weight was 26.9lbs this morning, that's good. Her blood counts are starting to slide down a little, but that is expected. The chemo will run till Tuesday evening, then she'll get a couple days break before getting her stem cells infused on Friday. We're definetely coming upon the "rough stuff".

For those of you who would like to send her a little something, the address for Shands is on the main page.
Please do not send flowers or fruit. She loves Pooh, stickers, books, balloons, puzzles (not that she doesn't already have plenty of all this).

Please pray that she continues to do well and that the coming weeks will pass quickly for her. We thank all of you, again and again, for your thoughts and prayers.

Friday, September 17, 2004 10:53 PM CDT

Hannah's chemo got started about 6p on Friday. So, we're on our way. We got the test results from her GFR (kidney function) about 2p. Her number was 144, which is quite good (anything above 100 is good). This round of chemo is Hi dose. We've been referring to it as "nuclear bomb" chemo. She will get chemo continuously for 4 days. Then get a couple days of rest and then get her stem cells infused on Friday the 24th. In transplant, days are referred to in a specific manner. Today is day -7, meaning 7 days till transplant, (which is day 0). After day 0, the days are numbered +1, +2, etc. So if I refer to the days in those terms, I hope you can follow. Certain things happen at specific times, eg. on day +28. We're not exactly sure what to expect as she has not had a couple of these chemo drugs and the dosage is so high. The general impression is that things don't get bad till a couple of days after the chemo ends, and it's rough for a couple of weeks. We pray that she will have minimal effects.
Hannah's spirits have remained quite good. She has been a bit more moody than usual. But that is totally understandable. Tonight we played in her tent, read books and played alot of "hide" (which involves getting under the blanket with all her bears and waiting for someone to find us).
Please pray that the chemo does it's job but doesn't damage any organs or hearing. That mucositis is minimal. And that her stem cells do their job.
PS - At some point I will post the address here at Shands for those of you who wish to send her something.

Thursday, September 16, 2004 1:28 PM CDT

Hannah is doing pretty well, although she has not started chemo yet. Wednesday was a frustrating day. In the morning, we learned the the 24hr urine collection test did not yield reliable results. Their was not enough creatinine (a protein) in the urine to analyze properly. This is not thought to be because there's a problem with her kidneys, just that she's a small person. So, we were told we would have to do a nuclear med blood sample which would require a peripheral IV to be put in (Hannah would have to be "stuck") and an "isotope tracer" injected. By the time this decision was made, there were some problems with the logistics due to timing of the blood draws that would have to be done. So, after waking her from her nap to put in the IV, it was decided to wait till Thursday morning. With no nap, she was a bit moody during the afternoon. But she did get to spend some time outside, she played in a water fountain they have in a courtyard. We got the IV done this morning around 10a and headed down for the injection. There we were told that they if they did the blood draws from her central line, they might be "contaminated" with the "tracer" and the test would be invalid and we would have to wait another day or so to try again. The other choice was to have the blood drawn directly from her veins (2 more "sticks"), but that there shouldn't be any issues with that method. We made the hard decision to have it done with the "sticks". It seemed like it was the best way to get accurate results, and we didn't want to chance another delay. It's not easy making a decision that you know will give her some pain and discomfort. Although, it seems that we have to make those quite often, it's tough. Hopefully, we will have accurate and valid results on Friday, and we can get started with the chemo. These delays have added to the frustration and anticipation of all this, not to mention spending a week in the hospital for testing. But we're "movin' on".
Hannah continues to do pretty well drinking and eating. We're still working on getting her to wear a mask. We've gotten pretty creative drawing on them, putting stickers on them...she says "No mask", and throws them on the floor. There will soon come a time that she will not be able to leave her room without a mask on, we hope for a breakthrough.
I know all of you are praying extra hard for Hannah, she will need it. Thank you for all of your thoughts and prayers.

Tuesday, September 14, 2004 9:21 AM CDT

Hannah was admitted to Shands on Monday. We got to the hospital around 9:30a and were told there was a problem with Hannah's GFR test (kidney function) and another test would be required before we could start chemo. This test would require Hannah to have a urine catheter inserted so we could collect her urine for 24 hours. We were also informed that there wasn't a bed available for hours. So, we decided to get Hannah outside for a bit. We went to a friends house where Hannah had fun feeding some ducks. We finally got into her room around 3p. Around 4p, she had the catheter inserted. This was NOT a fun experience. But she recovered pretty quickly from it. She had a pretty good evening afterwards. She ran the hallways of our new "home", then we watched some Pooh. Dr. Staba stopped by to see her and say "hello". She slept well and is drinking her milk pretty well also. Eating is a hit or miss thing, but her weight is pretty good (about 26lbs). We hope to have the results of the urine test tomorrow morning and be able to start her chemo by Wednesday evening. Her blood count numbers are good, for now. They will drop quickly after the chemo.

So, we're here. Thankfully, it looks like Ivan won't be joining us. Please continue to keep Hannah in your prayers, she has a tough road ahead.

Friday, September 10, 2004 10:51 PM CDT

Hannah has had quite a week. We left for Gainesville very early Wednesday morning. Once we got to Shands, they drew blood to check her counts. Then we met with the physician's assistant (PA). Then down to anesthesia to answer some medical history questions, next an education class, and finally meet with a research nurse to discuss different studies. During the course of the day, we did get to meet Dr. Staba who will be Hannah's primary physician during transplant. We liked her right away. We spent Thursday morning with her signing all the associated paperwork for tranpslant. Then to MRI for a scan of Hannah's bladder. Dr. Staba came to see us in recovery and gave us the wonderful news that her bladder was normal, there was nothing there. That is terrific news! So, technically, since all of her other scans and tests were good....Hannah is Officially NED!!!!!! PRAISES, PRAISES!!! Transplant, here we come! Hannah is scheduled to be admitted on Monday and probably will be getting chemo by that evening. She will get very Hi-dose chemo for 4 days straight. This is it Helpers...This is the mountain. Hannah will need your thoughts and prayers more than ever during this transplant.
Of course, with all this excitement, why not have to deal with a hurricane on top of it, right?! We may head to Gainesville early, depending on what Ivan does. This hurricane thing is getting really old (all you Florida people know what I mean).
Hannah really handled the Gainesville trip well and is in good spirits with good energy and eating and drinking well. The Lord has certainly answered our many prayers. We are so thankful how His Hand has been on our little HannahBear.

PS - I will try to update as often as possible, it may be difficult to do so in the coming days...so keep checking back...and leave a little note.
PSS - Thanks to Grandma & Grandpa D for helping watch Hannah at Shands while we were in all our meetings.

Monday, September 6, 2004 8:28 PM CDT

Hannah had a pretty good week, good spirits and good energy. She had more testing and a red blood transfusion on Friday. A test for her kidney function, an echocardiogram, an EKG and a urine test. She also had an ultrasound of her bladder. The docs saw "something" on her bladder on her CT scan from Monday. They're not sure what "it" is, or if it's nothing. Please pray that it's "nothing". They also wanted to do an MRI on Friday. However, we couldn't get it scheduled at St. Joe's till the following Thursday (when we're going to be in Gainesville). So, the decision was made to have the MRI done while we're up at Shands. We will be there Wednesday and Thursday for meetings and testing for transplant. We should get the results of Friday's tests on Tuesday, she has a clinic visit for blood counts. We did get the results of her bone marrow aspiration..it's clear!!! No sign of malignancy in the marrow!!! And besides the bladder issue, the rest of her CT scan was clear also. Prayers are being answered.
We all made it through Frances OK. Lots of wind and rain but not alot of damage in the Tampa area.
This is the final week before transplant, and it will be a busy one. It's always seemed so far away, and now, it's here. Hannah will need ALL of your prayers during this time.

Monday, August 30, 2004 9:34 PM CDT

Hannah did very well through her scans today. She even woke up from sedation in a "not too bad" mood. Usually after being "down" for 2-3 hours, she's not too pleasant when she wakes up (who wouldn't be a bit grumpy, right). She was sedated about 10:45a for her PET/CT. She fought going out, as she usually does. She finished that about 12:30p, then she had her bone aspiration, performed by Dr. Wynn. That went well. Then her hearing test, which she passed with "flying colors". This is excellent news since she has received some chemos that are pretty rough on the hearing. She woke up around 2p and was out the door around 2:30p. She did a pretty good job drinking during the rest of the day, and eating ok. We started giving her glutamine today. It's an amino acid that we hope will reduce the expected mucositis during tranpslant. It's in a powder form that we'll put in her drinks and use in the mouthwash. We're not sure to what degree it will work, but if it helps at all, it'll be worth it. The mucositis can be pretty severe during transplant. Hannah will have more tests on Friday; a GFR (evaluates kidney function), an echocardiogram (looks at her heart), and an EKG. We also hope to get the results of todays scans and aspiration on Friday. So, Hannah had a long day but did pretty well. Please continue to keep her in your prayers. And as September is National Pediatric Cancer Awareness Month, say a prayer for all those kiddies that are fighting their own fight, their families too.

Sunday, August 29, 2004 7:06 PM CDT

Hannah had a pretty good weekend (the whole week really). Saturday, she went to the St. Pete Pier with dad & GrandmaD. They have a little aquarium there, so she got to see some "bishees", and pelicans too, (eating some "bishees"). It was also her last night of TPN. We hope that she can stay off it till transplant. Her appetite has been improving, but spotty. Her drinking needs to improve though.
Monday is a big day for her. It will start with a clinic visit at 8:30a for blood work. Then a hearing test. Then sedation for her PET/CT scan and bone marrow aspiration. Pleae pray that all goes well during the procedures and that the results of these tests are all positive and good.

Thursday, August 26, 2004 12:08 AM CDT

Hannah's clinic visit went well this morning. Although her counts were lower than expected. Her ANC=454 (due to no GCSF shots), Hgb=8.2 (a little low), platelets=50. Her monos were quite high though, which should indicate that her counts will be rising. She'll get another blood count on Monday before her tests.
We're still waiting on confirmation of exact dates, but it looks like we'll be going to Shands on Sept. 8&9 for pre-transplant evaluation. Her admit date is still set for Sept. 13, barring any unforseen "incidents". I know I have stated this before, but with transplant date drawing near, it bears repeating...this transplant will be the roughest thing she's faced yet (us too, for that matter). It will be long and intense for everyone involved. Please pray for our strength and endurance during this time. Until then, we will enjoy having Hannah at home and wrapping her in love. If I could only express the range of emotions experienced on a daily basis. She brings so much joy into our lives, the disease brings so much pain. It never seems fair.

Wednesday, August 25, 2004 5:38 PM CDT

Hannah is doing pretty well. She's eating fairly well and drinking a little (we'd like to see more). Her spirits and energy are good. We have a clinic visit tomorrow for blood counts (to see if they are continuing to rise) and a short physical before her tests on Monday. Her dentist appointment went very well. The dentist said her teeth and gums looked very good. No sign of effects from chemo. She didn't even need a cleaning. That was a relief for dad.

That's about it for now. Hoping the rest of the week is quiet and just enjoy being at home.

Monday, August 23, 2004 8:34 PM CDT

Hannah's clinic visit went well today. Her dressing was changed and blood drawn. Her counts were good. Red blood was 8.8, platelets=33and ANC=2800, all good numbers. So she didn't need any transfusions and she doesn't have to get her daily shot for awhile. The docs think the numbers are heading up. She had a good night with no nausea and actually ate a little bit of macaroni salad for dinner. Her spirits have been really good and she's been pretty active and playful (which is a great thing to see). The doc also said we could do the TPN every other night, so hopefully by the end of the week, she'll be off it for a bit (maybe till transplant). She had an ultrasound of her kidney last Thursday before she was discharge, the resluts came back normal. On Monday, Aug 30, she is scheduled for a hearing test, a PET/CT, and a bone marrow aspiration. These tests will be very important in determing the state of her disease before transplant. We will be praying for a NED status (No Evidence of Disease). It does not mean she's cured, it means there is no detectable disease. So, we need all you Helpers to pray for clean scans and marrow and no hearing loss.
On Tuesday, she will have her first dentist visit. I'm not sure what to expect what with more strangers in white coats, poking into her mouth. We'll have to see. We had to find a pediatric dentist with experience with cancer kids because the chemo can damage not only her existing teeth but also her permanent teeth behind them. I don't know too many people who like going to the dentist anyway, nevermind a 2 year old. Should be fun!
So, she's doing pretty well but definetly still needs all your prayers for her upcoming schedule of tests and such.

Friday, August 20, 2004 2:02 PM CDT

Hannah was discharged from the hospital Thursday afternoon. She received a platelet transfusion and had an ultrasound of her kidneys before leaving the hospital. She had some nausea while getting her TPN last night at home. We're not sure exactly why. She'll get some anti-nausea medicine tonite, hopefully that will help. We're looking forward to having her at home for awhile. She does have a clinic visit on Monday to check her blood counts and change her broviac dressing. Pray for a quiet weekend for her.

Wednesday, August 18, 2004 9:47 PM CDT

Hannah has improved dramatically in the last couple of days. She has been acting more like herself, smiling and laughing and playing. As of today, she is off morphine completely. Her mucositis (mouth sores) seem to be all but gone. She is swallowing and talking (but still not eating). She is still on TPN and probably will be even after we go home, which we hope to be doing by the weekend. This, of course, is dependant on her ANC count. It must be at least 500 before she can go home. Today it was 98. Her red blood and platelets seem to be holding OK. So we hope that continues (although she may need a transfusion before being discharged). So, we're beginning to look forward to a weekend at home, but keeping our hopes in check. Still no fevers to report, which is a very good thing. It seems that she's turned the corner out of this one. We pray that continues.

We would like to send out a very special thanks to the ladies of the Fraternal Order of Eagles in Largo, Fl. They have worked hard in their fundraising efforts to help Hannah and other charities. We know Hannah holds a special place in their hearts.

Tuesday, August 17, 2004 11:48 AM CDT

Hannah is improving. Her white counts have started to come up, ANC=175 today, it's not much but it's not zero. She is also starting to swallow a little. She spiked a temp of 103 on Sunday, tylenol brought it down and she hasn't had a fever since. When she spikes a temp like that, they always draw blood cultures, the ones from Sunday were negative as of today. Her mood and energy seems to be improving also. We are hoping she might get out of the hospital by the weekend, if her white counts continue to climb and she doesn't have any more fevers. If she does indeed get discharged by the weekend, we should still be on schedule for transplant in mid-September. We are gearing up for it. There is alot of coordination that has to be done between Shands and St. Joe's. She is scheduled to have some testing done the week of August 23. We are currently trying to determine exactly what tests need to be done and when. Scheduling can be a nightmare with the protocol, different hospitals and doctors. The anxiety level is starting to increase as well, as the transplant is a very critical part of her treatment. We also know that is will be a very difficult time for her.
The prayers are working, please continue to keep praying for her white counts to rise and temp to stay down.

Sunday, August 15, 2004 9:27 AM CDT

Hannah's condition remains mostly unchanged. Her ANC=0, her temps have stayed pretty good, with an occasional spike. She still is not swallowing (which makes giving her any meds by mouth a most unpleasant experience for all involved), and is still in some pain from the mucositis. She is still on a morphine drip, 2 antibiotics, and TPN at night. On Saturday, she had a couple spells of nausea. She finally had a bowel movement (her last was about a week ago). We are concerned about her white count (ANC) not coming up as we normally expect. Dr. Rossbach feels this is due to the late effects of all the chemo she has received and is fairly normal in cancer patients. Basically, her bone marrow is taking longer to recover (plus trying to fight the infection and mucositis). We expect she'll be in the hospital for at least another week. She is having a rough time and needs all of your prayers.
We are very thankful that Charley did not hit the Tampa area, but think of those south of us that were not so fortunate. Please pray for all those who lost their homes or loved ones and are trying to "pick up the pieces".

Thursday, August 12, 2004 2:13 PM CDT

Hannah continues to hold her own. Her temps are staying pretty good but the mucositis is still going strong. Her ANC=0 again today, we hope that it will start to rise soon. Her platelets were pretty low, 11, so she'll get a transfusion today. She'll probably need red blood tomorrow. She's been sleeping a bit more than usual, probably from the morphine. Hopefully it will help her get some strength back. They took another urine culture to see if the ecoli is still present. We'll have to wait for results. It's hard to see her not smiling or laughing or being herself. She still is not swallowing because it hurts. Dad tried to show her how to spit into a cup, she didn't go for it. We'll be in the hospital to ride out the storm, Charley, that's headed our way. I guess the hospital's as good a place as any to stay safe. Everybody batten down the hatches!

Wednesday, August 11, 2004 2:57 PM CDT

Hannah has had a rough past couple of days. Her temps are still 99-100, but haven't spiked any higher. The mucositis has not improved, so it is painful for her to swallow. So she tries to hold all her saliva in her mouth (so she doesn't have to swallow), eventually it drools out. She is still quite irritable, understandably. Her morphine drip was bumped up a little from .2 to .3, it does seem to help. I can't say she's improving alot, but she seems to be holding steady (which is alot better than declining). Her ANC=0, when her white counts start to rise (and her body can fight better), we hope the mucositis will start to resolve. She's still on Hi-dose antibiotics (2 different kinds), TPN, GCSF (to help the white counts), IV fluids, and morphine. Her platelets were 22 this morning, that's pretty low. So, she'll probably get transfused tomorrow.
She needs lots of prayers and positive thoughts from her Helpers.

Tuesday, August 10, 2004 12:44 AM CDT

Hannah's temps have been ok. Low to mid-grade (99-100), so that's good. Her blood cultures are still negative. Which is good in regards to her line probably being clean. Her urine analysis showed ecoli. Which basically means she has a urinary tract infection. She is still on a low dose morphine drip, which seems to help some. She has some sores in her mouth (called mucositis), which is caused by the chemo. We think it may be down her esophagus as well. Which means she doesn't want to swallow, so she's drooling quite a bit. We have been very fortunate so far during treatment that she really hasn't had much mucositis. Now seems to be the worst she's had it. Unfortunately, we pretty much have to let the mucositis run its course. So, mucositis in combination with a UTI seems to be the consensus. She just feels miserable, and you can tell, she's very irritable and doesn't like to be touched at all.
Please keep her in your prayers.

Monday, August 9, 2004 10:03 AM CDT

Hannah was admitted to the hospital on Sunday morning due to a fever. She had not been eating or drinking well the past couple of days, and just not being herself (a little extra crabby). Her temp was fine Sunday morning but rose sharply just before noon. So she is getting antibiotics and IV fluids. We'll wait and see if the blood cultures show anything. She's in discomfort, the doc wants to put her on a morphine drip to "take the edge off". She'll go back on TPN (IV nutrients) tonite as well. We feel bad for her because you can tell she feels like crap. We'll try to make her comfortable until she gets some strength back. Of course, this "infection?" hit while her ANC=0, so it takes its toll. Her red blood and platelets are also low, she should get transfusions of both today. Then there's always the worry that the Broviac will get infected and we'll have to pull it.
So, what we were hoping would be a bit of a break before transplant, will not start for a little while. These things usually take at least a week in the hospital. Hopefully, this will be only a "minor" setback. Please continue to pray for Hannah. For her strength to fight through, For her body to recover quickly, and For her line to stay clean.

Tuesday, August 3, 2004 9:14 PM CDT

Hannah was discharged from the hospital today about 11:30am. She went home with mom and played the rest of the day. She handled this round extremely well. She didn't get sick once despite getting chemo and TPN. She didn't need any transfusions either. She has a clinic visit on Thursday when we hope to find out more about her upcoming scans and tests that need to be done before transplant. If all goes well, transplant should happen the 1st or 2nd week of September. That is her next mountain to climb. But we know God's Hand will be on her every step of the way.

Some sad news to report: Alex, the little girl who started a lemonade stand to raise money for pediatric cancer research, has become an Angel. Her lemonade stand idea grew into a national fund raiser that has brought in over 1 million dollars. She fought neuroblastoma for 7 long years, but because of her efforts, other children have a better chance of beating cancer. She was an amazing little girl, taken by this terrible disease. Please pray for peace for her family during this time. Her website is: www.alexslemonade.com. I've heard her story has been on the national news the past couple of days.

I've added some new pics of Hannah, click the link above the journal.

Sunday, August 1, 2004 7:03 AM CDT

Hannah started her chemo about 9:30p Friday night. She spent the day getting IV fluids. She has to be at a certain hydration level before chemo can start, so that took a little bit. She seems to be handling it pretty well. As of Saturday afternoon, no nausea. Her spirits are pretty good, with the occasional mood swing. But overall, doing well.
This is her last induction round of chemo which will last till Monday night. So, if all goes well, we might get out on Tuesday/Wednesday.
Thank you for your continuing prayers for Hannah.

Thursday, July 29, 2004 8:00 PM CDT

Hannah had a very good follow-up visit with Dr. Beierle today. She gave us a green light for chemo round 6.
So, Hannah will have a clinic visit in the morning and if her blood counts are OK, she'll be admitted.
So, please pray for a good, quick chemo stay with no fevers. Keeping it short tonite!

Sunday, July 25, 2004 9:53 PM CDT

HANNAH'S 2nd BIRTHDAY!!!!!!!!
It was soooo good to have Hannah home for her birthday. We had the "official" party a couple of weeks ago, before we went to Gainesville. So, today was a laid back day with a small party at Dad's house. Thank you to the Diva's who sent very nice presents and setup the birthday website. (The address is in the guestbook). Thanks to everyone that signed the guestbook for her birthday.
Hannah has been doing well since returning home. Her appetite is really pretty good. She's drinking some but we'd like to see more (fears of dehydration). But overall, she is doing extremely well. We'll have a clinic visit in Tampa on Monday or Tuesday, a follow-up with Dr. Beierle in Gainesville on Thursday, and probably start chemo 6 on Friday. As you can see, even though she's home, she still has a busy week ahead.
Please continue to keep her in your prayers as well as the many other children fighting disease and illness.

Friday, July 23, 2004 8:35 PM CDT

Hannah was discharged from Shands today around 12:30p. She was able to start eating last night and did OK with gatorade and apple sauce. This morning she had a good breakfast and kept it all down. She had lots of energy this morning, running the halls and making some noise. It was good to see. Dr. Beierle came by around 10ish, and gave us the green light to go. She also shared some great news, the pathology from the tumor showed NO active cancer cells!!!! The primary tumor mass consisted of DEAD cancer cells. NO active cancer cells were found. This is terrific news! So, Hannah gets to have a small break before going in for the next round of chemo, probably next Friday (she has a follow up visit with Dr. Beierle on Thursday). Dr. Beierle has to give the OK before we can proceed with chemo.
Overall, things went extremely well with the Gainesville trip. We have decided that we will be returning to Shands (probably in September) for the transplant. She still has quite a road ahead of her, but Hannah has responded amazingly well to the treatment. We are confident that she will continue to do well. She is a testament that prayers do work and that God's Hand is over her. I'll try to post some pics from our trip soon. Hope everyone has a good weekend as we enjoy ours at home.
P.S. Don't forget...Hannah's birthday is Sunday..2yrs...leave a note in the guestbook.

Thursday, July 22, 2004 1:06 PM CDT

Hannah continues to improve daily. Her NG tube came out Wednesday morning and she had the "much anticipated" poop, that night. We got to take her outside for an hour or so yesterday. No IV pole or tubes connected, yeah! It was quite hot though. So, we let her play in a fountain they have in back of Shands. There are times when she shows that she's not 100but for the most part, her spirits and energy are good. This morning we got the OK to start her with some clear liquids and work our way up to jello. The docs want to see how she tolerates these before moving on to "real" food. She has to show that she will eat and that she can keep it down before we can start thinking about going home. Once her TPN is finished today, we're going to see how she does without it. That should help her appetite come around.

All in all, she's doing very well, considering she has a 5 inch incision in her belly. We are still hopeful of going home sometime over the weekend, maybe even on Friday. We'll just have to wait and see what Dr. Beierle says. She's been by to see Hannah every day and is very pleased with her recovery. After she get's home, she'll probably have a week or so until she goes back in St. Joe's for another round of chemo.

Thanks to all who have left a note in the guestbook, sent a card, or come by to visit. We truly do appreciate the concern from all of you. Our little girl is blessed to have so many "Helpers".

Sunday, July 18, 2004 8:21 PM CDT

Hannah is having an excellent recovery from her surgery.
She was pretty much "out of it" Friday night and Saturday till about 3p. During that time, she had 3 doses of morphine for pain. The last one at about 5a on Saturday morning. That is also when they removed her peripheral IV and arterial line. After 3p on Saturday when she woke, she didn't seem to be in discomfort unless she was being moved around. Otherwise, she had a decent spirit. She just didn't want to be messed with too much, who could blame her. Saturday evening, she was OK with being on someone's lap, but wasn't too active. We watched some Pooh videos and read some books. She fell aspleep around 9:30p.

Dr. Beierle had stopped by in the afternoon. She said Hannah looked real good and we would probably be transfered from PICU. Well, we were....at 2am. They didn't think they were going to move us till the morning. Evidently, something happened and they needed the room sooner. So, 2am, we're cruising back down to the 4th floor, to the same room we were in before surgery. Hannah didn't go back to sleep for quite awhile, probably around 4:30am. She didn't seem to be in pain, just quiet, laying there but not sleeping.
She woke up around 7:30a on Sunday. We watched more Pooh videos (Lion King too). She was happy just sittin' on daddy's lap. She was able to stand up and walk around a bit. And she wasn't as sensitive to being moved around. She started her TPN (IV nutrients) tonite (she hasn't really eaten anything since last Wednesday). She still has a tube in her nose that sucks out her stomach until her intestines "wake up". She can't eat till that tube comes out, and that tube can't come out until she has a poop. (That might be more than some of you wanted to know.) She started having some gas tonite, so hopefully, you know what will follow. Dr. Beierle is very happy with her recovery so far, and so are we.

If anyone wants to send a card or something to Hannah, we will probably be at Shands for a few more days (hopefully out by the end of the week, before her birthday on Sunday). Please, No flowers.
The address is:
Shands Hospital
ATTN: RM 4520A - Hannah Douglas
Box 100351
Gainesville, FL 32610

We, again, Thank ALL of you for your thoughts and diligent prayers. We are extremely relieved and encouraged by how she has come through the surgery. Praises! Praises!

Friday, July 16, 2004 6:21 PM CDT

SURGERY DAY!!!

Today began around 7am with a visit from a surgical resident. After a little bit of TV and playroom, Hannah was disconnected from her IV pole long enough to talk a little walk outside. Both sets of grandparents arrived between 10a - 11a, along with John Fox, for some visiting time. Hannah's spirits were pretty good, but she got a little tired and cranky. We headed down to pre-op around 12:30p, which is where we stayed till about 2:15p. Luckily, Hannah slept the whole time we were in pre-op, right up until the time it was time to go into OR. We went to the waiting room, to wait. Around 3:30p, we got a call -- our hearts jumped, but they called to say they had just started the surgery (which was scheduled for 4 hours). At 5p we got the call from Dr. Beierle (after only an hour and a half). The surgery was done, and it was a COMPLETE resection with NO removal of liver or kidney tissue. Praises, Praises, Praises!!! The tumor, about the size of a ping pong ball, came out with the adrenal gland. That was it!!! No other tumors were found, anywhere. Dr. Beierle said Hannah handled all aspects of the surgery very well. No transfusions were needed. Dr. Beierle also said that the tumor came out easier than she had expected. We got into PICU to see Hannah about 6:30p. She was still asleep, but with lots of wires and tubes. She will be in PICU thru Saturday, maybe Sunday. Then back to the Peds floor for a few more days.

So, all you Helpers out there, God answered our prayers. He kept His hand on Hannah and on the surgeon's hands. The tumor was removed without any other organ tissue. She still has some recovering to do, hopefully a week or less. Again, we thank ALL of you for your prayers. They DO work.

Thursday, July 15, 2004 11:03 PM CDT

Yesterdays clinic visit went well. However, her ANC level was lower than expected and caused some concern over whether or not to proceed with the surgery. After many phone calls between dad and doctors, all the docs involved decided that her counts would be coming up and to go ahead. It made for a very tense afternoon, not knowing if we were coming or going. Sometimes, this life is not even day by day, it's hour by hour.

We started out for Gainesville about 6:45am. Hannah got sick in Mom's car before we got out of Tampa. After a brief stop at a rest area to clean up, we were back on the road. We got to Shands about 9:45am. Went through the admission paperwork pretty quickly, then waited. We got into our room about noon. Shortly thereafter, they inserted a tube into Hannah's nose and down her throat (called an NG tube). They use this to put medicine directly into her stomach. She had been an angel all morning, until this point. And who could blame her. They started her bowel prep medicine after that. It basically made her poop, alot. A couple of hours later, she got sick and the NG tube came out. So we had to repeat the process of putting it back in. By early evening she had calmed down and watched some videos. She also took a ride around the peds floor in a red wagon, something she hasn't really shown an interest for in quite awhile. She seemed to enjoy it. We're not in a private room (like we're used to at Tampa Children's), so it's a bit different. It took a little while longer to get her settled down for bed. She got to sleep around 11:15p. Throughout the day we had visits from many doctors: Dr. Beierle (surgeon), Dr. Daegen (anesthesiologist), Dr. Slayton & Dr. Hunger (oncologist) as well as a couple of residents. All in all, a pretty full day.

On Friday, Hannah will head down to pre-op around noon. The surgery should start by 1p. We're not sure exactly how long it will be, but is scheduled for 4 hours. From OR, she'll go directly to ICU. That's about all we know right now. I will update when I can.

We ask you again, to offer up Hannah to the Lord in prayer. For Him to bless the surgeon's hands so she can remove all the tumorous tissue without having to take out any normal oragan tissue. We know and have seen that God's Hand has been on Hannah, pray for that Hand to continue to be on her, to protect her, and to heal her.
It still amazes me that so many, care so much for our little one. Thank you and God Bless.

Sunday, July 11, 2004 8:37 PM CDT

Hannah had a good (and busy) weekend. Grandma & Grandpa Douglas came down to Tampa for a visit. Saturday morning, we headed to Largo to visit the ladies (and gentlemen) of the Fraternal Order of Eagles. They held a benefit sale for Hannah. She quite enjoyed herself (and all the attention). Thank you Fraternal Order for all your efforts to help Hannah.

We had a small pre-birthday party on Sunday morning. Hannah had a fun morning playing with her birthday balloons and opening presents and having some "Dora" cake. With both sets of grandparents present, cameras were getting a workout. I'll post the pics as soon as possible. She got to play with a little friend (Ms. Zoe) in the afternoon. They had a great time together.

Hannah has had limited nausea since the doctors changed the TPN "formula" (since Tuesday, she got sick only twice on Saturday and once on Sunday). Her spirits have been very good (her energy level as well). She continues to show an amazing display of courage and strength, which she will need for the road ahead. She inspires me daily. Her ability to move on and put the "icky" things behind...is amazing.

Friday, July 9, 2004 7:06 AM CDT

Hannah's been having a pretty good week. It looks like the new TPN "formula" is working pretty well. She hasn't gotten sick since Tuesday morning. That's good. She has been in good spirits with pretty good energy. It's good having her home.

Her surgery has been schduled for Friday, July 16th. She'll have a clinic visit in Tampa on Wednesday to check her counts. If all is well (which we expect), we'll head up to Gainesville early Thursday morning. She'll get admitted and some pre-operative testing done, we'll meet again with the surgeon also. I'm kind of glad she's too young to know this is coming. This way, only Mom and Dad have to worry. She's been a tough kid so far, and we're confident that all will go well with her surgery.

The prayers are working, please continue praying -- for God to steady the hand of the surgeon and a complete resection, and quick recovery.

I've added some new pics, click the link above the journal.

Wednesday, July 7, 2004 8:50 AM CDT

Hope everyone had a good holiday weekend. Hannah enjoyed it at home. She had a pretty good weekend. Still had some nausea, but overall in good spirits. Her energy was a little low. We did learn she doesn't like fireworks. The loud "booms" made her quite unhappy. Maybe next year.
She had a clinic visit on Tuesday. All her counts looked great. Her ANC and platelet counts were high. Her electrolyte levels were also good. We wanted to try and get her off the TPN (IV nutrients), but the docs are hesitant about doing so. We feel the TPN is contributing to her nausea (she'll wake up in the middle of the night and get sick). They did adjust the "formula" for the TPN so it's not as acidic. She didn't get sick last night on the new "formula".

We have made the decision to go to Shand's Hospital in Gainesville for her surgery. We felt with her excellent response to the chemo and the stress of the travel (to NY) on her and a good surgeon, that Shand's was best for her. She is scheduled for surgery on July 16th. It will be an intensive surgery, with the possibility of her losing part of her liver and kidney. That is dependant on how "adhered" the primary tumor is to the surrounding tissue. She will be in ICU for a couple of days, then to a step down unit. In all, probably 7-10 days, if all goes well. There's the chance that she will be spending her 2nd birthday (July 25th) in the hospital. That's a drag. But we'll try and do something special for her there and maybe after we get back home.

So, we're at this next step. Surgery. As most of you know, we've struggled with where to do this (and the fact we have to do it at all). But we feel confident in the surgeon and facility. And really, it's all out of our hands. Please pray that God's Hand will guide the surgeon's. That there will be complete resection with minimal impact on surrounding organs. That she will have a quick recovery with minimal pain. Remember, July 16th. We'll need extra prayers on that day.

Friday, July 2, 2004 12:11 AM CDT

Hannah was discharged today around 11am. Before leaving, she received a platelt transfusion. Her chemistry levels were good. Her ANC=1750. She has been getting some meds (Zantac & Reglan) to help with the nausea and they seem to be working. She will continue on them for about a week. Her eating and drinking are still not where they should be, so she'll be getting the TPN (IV nutrients) while at home. In the end, we never really found out what caused her fever in the first place. The past couple of days have been pretty good for her. Mr. Mike has come in the evenings to play guitar for her. She really likes that!

On Wednesday, I spent quite a bit of time going over the images from her scans with Dr. Wynn (oncologist). Her secondary tumors do appear to be completely gone (at least as much as a catscan can see), and her primary tumor went from 57mm down to 22mm and "appears" to be encapsulated. Her bone scan was also negative. Let the rejoicing begin!

We are all glad to finally be home (it's been about 2 weeks). We hope that Hannah will get to enjoy a good stretch at home before surgery. We have sent the scans to the surgeons and are waiting to speak with them.

We wish everyone a Happy Fourth of July! Enjoy it with friends and family (and lots of good food)!

Tuesday, June 29, 2004 7:40 PM CDT

Tuesday was a busy and tough day for Hannah. The morning began at 8am with an echocardiogram (ultrasound pictures of the heart). They were checking for fluid around the heart. That scan was good, showed no fluid. Then we headed down to radiology for sedation. I always get a little uneasy watching her go to sleep. But it went well. First was her catscans then her bone scans. She woke up a little cranky but came around. She had a little bit of lunch, her appetite does seem to be coming around, and she drank about 10oz of apple juice (that's the most she's drank in a day for quite awhile). Then it was time for an EKG (which she did not want to sit still for). She was acting pretty irritable because she was tired. She went down for a nap aroun 2pm. Her chemistry levels are still a little low, but they are stabilizing. Her ANC=0 today, she will probably need platelets tomorrow, again. Her nausea has improved as well, she hasn't gotten sick in two days!

Dr. Wynn came by in the afternoon with preliminary results from her catscans. The results were TERRIFIC!!!!! All of her secondary tumors appear to be GONE!!! Her primary tumor has shrunk 90%!!! PRAISES, PRAISES, PRAISES!!!!!!
I will meet with Dr. Wynn (and hopefully a radiologist) tomorrow for the official report. So I will update tomorrow with more details.

It truly shows that God is listening to all the prayers in that she is having an excellent response to the chemo. We thank God for this wonderful news and the people that are praying for Hannah.

Monday, June 28, 2004 1:21 PM CDT

Saturday was a pretty ok day for Hannah. Only a little bit of nausea and pretty good spirits. Sunday was a bit worse. She got sick about 4 times and was not quite as energetic. She was low on platelets and will be receiving some today. Yesterday, there was a problem in the lab and we were unable to get her chemistry levels. Today, her potassium was still low, but ok. The phospherous and magnesium levels didn't show on the report. Evidently, they didn't test for those. Then the lab went down, again. So, we're not sure exactly what's going on with those levels. That, combined with her continued nausea, is concerning. Her oncologist has called for a gastroenterologist consult to see what could be happening with her GI tract. They want to try and address it with meds before proceeding to more invasive testing (endoscopy or colonoscopy).

Tomorrow is a big day, scan day. Hannah will have to be sedated to all of the testing (bone scan and cat scans). We are anxiously waiting to see exactly what effects the chemo treatments have had on her tumors. We probably won't get results till Wednesday and hope to be able to sit down with the radiologist then.

Please pray that her kidney function will improve, that her nausea will subside, that there are no serious GI issues and that her scans will show marked tumor shrinkage and no bone involvement. We thank ALL of you for your prayers and concern for our precious little one.

Saturday, June 26, 2004 3:36 PM CDT

Well, Hannah did not come home on Friday as we had hoped. But she is doing pretty well. Her nausea has subsided to only once or twice a day. Her spirits and energy are good. Cultures appear to be negative. However, some of her chemistry levels, namely her phosphorous and potassium, are a little low. She's been getting extra doses of both. This is thought to be a result of temporary kidney function due to the chemo drugs. Our oncologists, the good and wise men that they are, say this is normal, not to fear. (But a mild bit of concern is not fear....right?!) She received a red blood transfusion today and might get some platelets tomorrow. She is about to hit her nader (ANC=0), so these transfusions are normal. (It's amazing what you get to expect as "normal"). By all accounts, she's doing pretty well through it all. Her appetite is still pretty meager, todays intake was some Cheerios and a little milk. It's a start, we'll take it.

So, she'll be in the hospital till Sunday am or Monday am, hopefully. We'll have to come back on Tuesday for her scans, but that should be as an outpatient, hopefully. Everything is strictly "day to day" in regards to being discharged (as well as the rest of our lives!). With your prayers, we continue on with patience and strength. And Hannah inspires with her courage. I really wish I could convey to everyone how unbelievably strong in will and tolerant in spirit she endures all of this, with your prayers. Please continue to pray, she still needs it.

Thursday, June 24, 2004 9:26 PM CDT

Wednesday morning started with taking Hannah to the hospital with a fever (102F). After getting admitted, they drew blood and urine cultures, started antibiotics and IV fluids, and a chest x-ray. Her fever never really got above 102F and it broke pretty early on. She still had alot of nausea during the day, getting sick every hour or so. She continues to be a trooper, even through the sickness and all the medicines she has to take. In the evening, she said she wanted "chee chee" (that's cheese to you and me). So we went to the cafeteria and got some cheese. She got sick while in the cafeteria, and was eating a piece of cheese as we left. Amazing. This morning she got sick shortly after getting up (welcome back cheese!), and then had a bowel movement, which was her first in several days. So that was a good thing. Her chest x-ray was negative, her 24 hour cultures were negative, more good things. From there on, she had a really good day. Lots of energy and a playful spirit. In the evening, she wanted more cheese, so back to the cafeteria (minus the getting sick part). It's good to see she has some desire to eat, especially while on the IV nutrients. Overall, it was probably her best day in awhile. As of 9pm, she had only gotten sick the one time in the morning. Hopefully, the nausea will continue to subside. If her 48 hour cultures are negative and she doesn't get a temp, there's a good chance she'll come home Friday. Let's hope so, she needs some time at home.

Her follow up bone and CT scans are scheduled for Tuesday, the 29th. We still have not made the decision as to where the surgery will be done, either Shands (FL) of Sloan Kettering (NY). We pray the CT scans come back showing significant tumor reduction. That may help us decide where to go. Please pray for discernment for us in making the best decision for Hannah. It's a very important one and a very difficult one.

Wednesday, June 23, 2004 4:49 AM CDT

Sunday was a bit of a down day for Hannah. She had some nausea and was quite tired. She slept quite a bit in between getting sick. She awoke at 5am on Monday, getting sick, but was still deemed well enough to be discharged around 11am. When we got her home, her spirits seemed to improve right away. She even had an appetite, for which we were quite happy. Unfortunately, she could not keep it down. Her nausea continued through Monday night. Tuesday morning, Mom took her to the clinic for some IV hydration as she couldn't even keep liquids down (this includes the meds she gets to help prevent the nausea, which don't seem to be working to well even if she does bring it back up right away). She had an "ok" afternoon at home, but after her nap, the nausea continued. Needless to say we've been quite concerned for her as this is not usual for her. They've told us that this amount of nausea is not uncommon, especially after several rounds of chemo. (I still have the feeling it might be something more.) She has just handled all the other rounds so well, we're not sure what to think. She's such a brave little thing, but she has been miserable the past few days. This morning, around 5am, she popped a fever. So, were headed back to the hospital for admit. I'll update as soon as I can.

Sunday, June 20, 2004 6:41 AM CDT

This is the last day of chemo for round 5. This round has hit Hannah a bit harder than the rest. We're not sure exactly why, probably a combination of all the chemo rounds and the TPN (IV nutrients) and not having eaten in a few days and all the other drugs she's been getting. She is constantly hooked to an IV pole for something, chemo, IV fluids, TPN, etc. She has had some nausea at home while on the TPN. It's a bit worse now with the addition of the chemo. She got sick several times on Saturday. We have tried different meds to help prevent this, but nothing has stopped it completely. Today, she will only get one chemo drug, maybe that will help with the nausea. We are going to ask the docotrs about taking her off the TPN when she's back at home to see if her appetite will return. She will have to stay for a day or so of hydration after the chemo, so, we're probably looking at getting discharged Monday afternoon or Tuesday morning. For the most part, her spirits are good (when she's not getting sick), with a bit more crankiness and mood swings. At times, it seems nothing will make her happy. Can't blame her for that, but it does require an extra dose of patience for Mom and Dad.

Please pray that her nausea will subside and that the chemo will not cause ANY kidney damage (cisplatin is very toxic to kidneys).

Happy Father's Day to ALL the Dads out there. Enjoy the Day!

Thursday, June 17, 2004 7:18 PM CDT

Hannah was admited this afternoon for round 5 of chemo. She has had a pretty good week so far. Her antibiotics stopped on Sunday night. She has had some naseau in the mornings and her appetite is pretty much nill. So, she is still on TPN (IV nutrients) at night and will continue to be at least through the chemo. She also will get alot of IV fluids for hydration (to help guard against kidney damage from the cisplatin). During this round, she gets chemo for 3hours/day for 4 days, plus a day or so after for hydration. Her chemo started about 6pm this evening. Her ANC was 850 today, which is just above the level needed to start chemo. That was lower than what we had expected it to be. Her red blood and platelet counts were very good. She has not had a fever since the antibiotics stopped, that is a good indication her line is clean. Another Blessing! Please pray with us that Hannah does well through this round, that there are no serious side effects or damage from the chemo.

Mom and Dad visited Shands Hospital on Wednesday. We met with Dr. Hunger, who heads the bone marrow transplant unit and with Dr. Beierle, pediatric surgeon. We had good meetings with both. Shands has quite a bit of experience in bone marrow transplants. We both felt comfortable with the surgeon. These are difficult decisions we must make. Please pray that God will lead us to the right people and places.

But for now, the focus is on getting through round 5. As always, we appreciate all of the thoughts and prayers from everyone. God is listening!

Saturday, June 12, 2004 0:22 AM CDT

Hannah did receive a transfusion of red blood on Thursday. Her Hgb=7.4, a bit low. Her platelets are coming up well. Her ANC was high enough that we could stop giving her the daily shot of GCSF (helps promote production of white blood cells). Her appetite is still very suppressed. She's eating very little but is drinking her milk fairly well. The doctors want her to stay on the TPN (IV nutrients) at home until she gets admitted for round 5 (probably Thursday, June 17). She has gained a half pound or so recently, so I guess the TPN is doing its job. The results of her kidney test came back "normal", that's good. So we hope to have a hospital free weekend. No appointments till Thursday's admit. Everyone have a good weekend.

Wednesday, June 9, 2004 11:33 PM CDT

Well, it's good to have Hannah home. But even at home, she is hooked to a pump 15 hours a day. Home nurses have showed mom & dad how to mix up her meds and work the pumps. Her antibiotics will run through Sunday but she will stay on the IV nutrients (TPN) until she goes in for the next cycle on June 17 (estimated). The docs don't want her losing any weight before then. Her appetite is still supressed (but improving slightly) and she is still having some nasuea in the morning. She has a clinic visit Thursday morning for blood counts and to change her broviac dressing. Hopefully, her counts will still be heading up and she won't need any transfusions. She still continues to amaze us with her spirit and how well she handles all this.
We hope to visit Shands Hospital, in Gainesville, next week to meet with doctors to discuss her transplant and surgery. We're still not sure exactly where these procedures will be done. We ask that you pray that God will give us discernment to make the right choices for Hannah.
PS - If anyone saw Oprah's show on Monday, "Real Life Heros", the little girl at the end, Alex, has neuroblastoma. She was diagnosed at 1. At 4 she wanted to have a lemonade stand to raise money for research. She is now 8 and there are lemonade stands across the country, and they have raised $200,000 to date. On the show, Kellogs gave her a check for $25,000. She is an amazing little girl. If you'd like to visit her site: www.alexslemonade.com

Tuesday, June 8, 2004 5:26 PM CDT

Hannah was discharged today around 5pm. She's been in for 10 days fighting this infection. She had some naseua this morning. We believe it is caused from all the different antibiotics and an empty stomach. Her blood counts were good this morning; her platelets held, red blood went up a little, her ANC was down (she will get meds to bring them up). About 11am we went down to the day hospital, for sedation. Then she had a test to check her kidney function,results on Thursday. Her cultures were still negative at 72hrs, that's a good thing. However, her line could still be infected. If the infection returns, the line will have to be replaced. (Insert prayer for clean line...here). Tonite, home health will come with her IV antibiotics (cephapine & ampicillin every 8hrs) and her IV nutrients (TPN). She will be on a pump at night for the nutrients. The antibiotics will run till Sunday. Her next chemo cycle is scheduled for June 17. We think Hannah needs some "at home" recoup time to get ready for that.
Please pray for the line to be clean and for Hannah to gather strength for the next cycle.

Friday, June 4, 2004 3:23 PM CDT

It's Friday already, my how time flies. Hannah is doing pretty well. Her appetite is still suppressed, but she is drinking more, which is good. She's still getting her IV nutients, but only at night. So, exept for when she gets antibiotics and blood products, she is free from her IV pole. This she quite enjoys!!! Her counts were a little low this morning, so she received both red blood and platelets today. Her ANC is on the way up. They drew blood cultures yesterday, and the preliminary results came back clear. We still have to wait, probably till tomorrow, for conclusive resluts. So there is hope that her infection is cleared and her central line can be saved, both of which are good news. She will still get antibiotics at home for about another week. All this will probably push her next chemo cycle back by about a week. Her spirits are pretty good, her energy level seems to come and go, but overall it's pretty good too. If her eating increases a bit and no fevers, she might be coming home sometime over the weekend. Hope everyone enjoys theirs as well.

Wednesday, June 2, 2004 3:24 PM CDT

Hannah continues to improve. She hasn't had any more fevers. Her discomfort seems to be minimal. They have identified the bacteria as ecoli, which we learned, is not just from undercooked foods. There's no real answer as to how she contracted the infection. She's being treated with hi dose antibiotics, since her ANC level is still 0 and has no immune system. She will probably stay at this 0 level longer than normal since whatever white cells her body makes will be used up to fight the infection. This may delay her next round of chemo. Last night, she was started on TPN, an IV nutritional supplement. Her appetite is still almost non-existent (except for an occasional banana and goldfish). She had a good nights sleep and awoke at 7am in good spirits. We had a nice little walk around the hospital, she was moving pretty good. Her red blood count is holding ok, but she did receive another platelet transfusion today. She will be inpatient till at least Sunday, possibly longer depending on her blood counts. She continues to be a trooper, sometimes she's cranky for a bit (understandably), but it passes quickly.
We appreciate all of the prayers offered up on her behalf and ask that you continue to pray for her. We also ask that you pray for wisdom for Mom & Dad as we have some important decisions to make in the near future regarding her upcoming surgery and transplant.

Monday, May 31, 2004 6:41 PM CDT

Hannah had a relatively good week. The clinic visit on Thursday went well. But by Saturday, she was showing some signs that something wasn't quite right. She didn't have an appetitite, except for freezy pops. She was a bit more moody than normal but she wasn't running a temperature. That had changed by Sunday morning. She awoke with a temp of 102.5F, so it was off to the hospital. We got admitted about 7:30a and she had started to crash a bit. Draw some blood for cultures, start IV fluids, start antibiotics, get a couple of x-rays. All her blood counts were very low. So she received transfusions of red blood and platelets. The x-rays were clear for pneumonia. Her temp started to break at about 104F. By the afternoon, she was doing much better. However, it's plain to see that all of this has taken it's toll on her little body. Her immunity is zero right now, so her body doesn't have the cells necessary to fight the infection. She's getting pretty high doses of antibiotics that we hope do the job. They were able to identify the "family" of bacteria so they can use more "targeted" antibiotics. This "family" is usually related to gasto-intestinal infections but is also in the blood (which could contaminate her central line). She does exhibit some abdominal discomfort. She had a pretty rough nite as well. She was not able to get comfortable and was just pretty cranky, so not much sleep was had by anyone. In the morning, she was still in some discomfort. She received some pain meds to help, with limited success. She did eat a tiny bit of food. She will still be put on suplemental nutrition through her central line.
It was a bit scary to see her crash so fast, but she seems to be recovering well. We'll probably be in the hospital for at least a week, if all goes well. Please pray that she can fight off this infection quickly and that her central line stays clean. We hope all of you enjoyed your Memorial Day holiday and took a moment to remember the men and women for whom it is meant.

Tuesday, May 25, 2004 3:03 PM CDT

Monday 5/24 -- Hannah received a red blood transfusion this morning and was discharged about 1pm. Her energy was good. Her appetite was starting to come back as well. By all appearances, she came through round 4 very well.
She has a clinic visit on Thursday for blood counts. Hopefully, all will be smooth till round 5 which is scheduled for June 10. Thank you all for praying for Hannah!

Sunday, May 23, 2004 12:59 AM CDT

We want to Thank the Fraternal Order of Eagles in Largo for their benefit breakfast. Dad was able to attend and bring some pictures of Hannah as well as meet the wonderful people that have "adopted" Hannah as their cause. It is truly touching to see all the people that care for her even though they have never met her. Maybe someday soon they will.
Saturday 5/22 -- Hannah is still tolerating the chemo well. Although her appetite is pretty much non-existent, she is drinking a little milk. She hasn't gotten sick since Friday morning. In the afternoon, you could tell she wasn't feeling up to snuff. Understandably, she was acting tired and a bit moody. She went to sleep around 9pm and slept pretty well through the night (with the exception of the visits from the nurses).
Sunday 5/23 -- Hannah awoke in good spirits and with good energy. She ate very little for breakfast, couple of pieces of fruit and a couple bites of a doughnut. We played in the playroom for quite awhile before watching some Dora during lunch, which was very little. Her chemo will end at 4:30pm but she will be kept overnight for hydration. Her red blood count is getting a little low. She may need a transfusion before being discharged, hopefully Monday morning.

Friday, May 21, 2004 2:13 PM CDT

Thursday 5/20 -- The day started with a visit to the clinic for blood work and to change the dressing on Hannah's central line. We received word that her counts were good to go and by noon we were in a room. She received IV fluids for 2 hours.
Round 4 chemo started at 4:30pm. This cycle lasts for 3 days of continuous chemo, along with meds to help prevent nausea.
She ate a lite dinner but snacked on pretzel sticks. We colored and danced to music. Her spirits were good. She got to sleep around 11pm and slept through till 7:30a. One banana for breakfast was about all she would do. We watched some TV, then went to the playroom for a bit. We started to take a walk around 10am, but she got sick in the hallway. No more banana! We got cleaned up and went back to the room and watched Aladdin and actually ate a little macaroni salad and some fruit for lunch. Mom came up around 1pm, naptime. Dr. Tebbi and Dr. Wynn came by, so Mom and Dad got to talk with them about upcoming treatment events. She seems to be handling round 4 like the trooper that she is. It still amazes me how sweet our little girl can be going through this.
Please continue to pray the chemo will do it's job on the tumor cells but leave the healthy cells alone with minimal side effects. Also pray that ALL of her tumors will be gone so that surgery isn't necessary. Thank you all for thinking of our little one!

Monday, May 17, 2004 2:20 PM CDT

Hannah had a good clinic visit today. Her counts have recovered wonderfully and she did not need any blood products. So, we are still on schedule to start round 4 on Thursday. She spent the weekend at Dad's and had some special visitors, Grandma & Grandpa D, and some friends from Naples. Her appetite has been good and she's been drinking plenty of milk. Her spirits and energy are good going into round 4.
Please continue to pray for her, we know all the prayers are what's responsible for her doing so amazingly well through this so far.

Tuesday, May 11, 2004 10:23 AM CDT

Hannah had a good weekend with Mom and Grandparents.
Her blood counts on Monday were good so she didn't need any blood products. Next clinic visit on Thursday. Round 4 is scheduled to start on May 20. She has been in good spirits, no fevers and getting the appetite back.
We also received FANTASTIC news -- her stem cells were clean!!
God has certainly listned to all the prayers offerd up for Hannah. Praises be to Him!

Friday, May 7, 2004 6:57 AM CDT

Hannah had a clinic visit on Thursday. It went very well, just a blood draw and dressing change. Her blood counts were very good: Red 9.2, Platelets 240, ANC 14,000. We expect those numbers to be dropping over the next few days. Her appetite and thirst have come back pretty good. So, she did not need hydration at the clinic. She is doing very well after round 3. Nothing on the schedule till Monday, clinic. We were told that a sample of the latest bone aspiration that was sent to CA for additional testing wasn't processed in time and the sample "went bad". It isn't exactly critical, but it sure would have been nice to have the additional analysis done. We are still awaiting the results on her stem cell analysis. It's done at the same place so let's pray they get it right.
Hannah will be spending the weekend in Lakeland with Grandma & Grandpa B and Mom for Mother's Day. Her Greatgrandparents will be visiting also.
Keep praying for Hannah's continued health (no infections) between cycles and for all the other little kids out there fighting this and other cancers.

Monday, May 3, 2004 9:33 PM CDT

Hannah was discharged from the hospital about 5pm today.
She had a pretty ok day. Still not eating a whole lot. Hopefully that will improve in the coming days. She is still in pretty good spirits and doing remarkably well. It was a rainy day in Tampa, so she didn't get outside too much.
Ready for great news? Her bone marrow was clean of "gross" tumor cells, meaning that NONE could be found under a microscope (when she started treatment, 50

Monday, May 3, 2004 6:45 AM CDT

Cycle 3 finished Sunday around 5:30pm with Hannah still doing very well. She'll stay in the hospital for hydration till Monday evening or Tuesday morning. Saturday and Sunday were both good days as far as the nausea goes. She received a red blood transfusion on Saturday. Overall, her blood counts are doing what is expected with chemo.
Mr. Mike came and played his guitar for her twice over the weekend. She really enjoys it. (She actually calls a guitar, "Mike"). Thanks, Mr. Mike!
We hope to get the results of her bone marrow aspiration today. This week, we also hope to hear about the results of the testing on her stem cells for contamination. If there are signs of contamination, she'll have to go through the collection process again. So keep praying for clean cells. She'll probably be having some scans done between these cycles to show how effective the chemo has been. Hopefully though, we're looking for a quiet couple of weeks (meaning clinic visits only) till the next cycle. We ask that you pray to keep Hannah free from infections between rounds. She hasn't had one yet, which is amazing!
All in all, round 3 went very well for Hannah, which was good to see. She maintains her fiesty spirit and sweetness through it all.

Friday, April 30, 2004 1:45 PM CDT

Thursday, 4/29 -- The day started with a visit to the clinic, her blood counts were excellent. The bone marrow aspiration went pretty smoothly. It takes a little time for the results, if not on Friday, then Monday. We were in a room, on the oncology floor by 2pm and chemo cycle 3 started at 4:15pm. Hannah will get etoposide (VP16) every 2 hours and cisplatin for 1 hour, daily, for 4 days. She is getting lots of IV hydration to keep the kidneys flushed (protection against cisplatin). During the VP16, she has her blood pressure checked every 15 minutes. She's been getting pretty good about having it taken, but this will surely test that. So, the actual chemo treatment was over by 7:30pm, so only on IV fluids. She was energetic, playful and laughing for most of the night. She did get sick one time while sleeping, around midnite. But that was it. Woke up again around 4am, for about an hour or so. In our world, that's an OK night in the hospital.
Friday, 4/30 -- Hannah woke up in good spirits. Drank a little milk. Ate a pretty small breakfast. She likes maple syrup, on anything, but she'll lick the syrup off, and dip it in again. Her appetite is diminished, and she's become finicky and a nibbler. That's OK. We'd like for her to eat alot more. But then I think "She's eating..., on the King of Nausea Chemo.", that's pretty good. A 30 minute stroll outside in her little red car, a little playroom action, a little bit of lunch, all being happy and playful. Mom will be staying with her tonight and hopes for more of the same.

So, 1 day in, Hannah is doing very well in Cycle 3. We know that God is answering the prayers from all of Hannah's Helpers. So keep on praying! For both continued tolerance of the drugs by Hannah,and NO hearing or kidney damge from the cisplatin.These drugs are truly, a double edged sword.

Tuesday, April 27, 2004 12:53 AM CDT

Monday, 4/26 -- Hannah had good counts on her blood today.
Her ANC=7500 (very good), platelets=101 (very good)and Hgb=8.6 (good). So, she didn't need any blood products. This puts us on track for admission on Thursday for round 3 of chemo.

Tuesday, 4/27 -- Mom took Hannah to visit her friends at school, since her ANC was high. Everyone was glad to see her even though it was for a short time.

This upcoming round of chemo uses a drug called cisplaten. It is one of the strongest chemo drugs used. It's noted for causing severe nausea, hearing loss, and kidney damage. We ask all of you to pray that God will protect Hannah from these specific side effects. That the drug will do it's job on the tumor cells but not affect Hannah's hearing or kidneys and that she not feel sick (nausea).

Sunday, April 25, 2004 6:49 PM CDT

Friday, 4/23 -- After a bit of a rough evening, Hannah was discharged about 9am. She had to be given more pain meds during the evening. She spent the day at Dad's house. Grandma Douglas came down to spend some time with her. She had fun blowing bubbles and playing in her sandbox.
She fell asleep around 7pm and slept till about 3am. She was up for an hour or so and went back to sleep till 7am. She needed some good sleep.

Saturday, 4/24 -- Hannah had a relaxing morining at Dad's. We blew more bubbles and watched Finding Nemo. She returned to Moms in the afternoon for a little bar-b-cue.

Hannah really is amazing. After the tough day on Thursday, we didn't know what to expect. But she was happy and playful all weekend. Her mouth is still a little sore and she has some discomfort when she poops. But overall, she is doing exceptionally well. She is still eating (not as much as we'd like) but she is, and drinking pretty good.
We have a clinic visit on Monday for some blood work. The plan is to be admitted on Thursday for round 3 of chemo. This round has drugs she hasn't gotten yet, so we're not sure how she's going to react. She'll also have another bone marrow aspiration on Thursday. It will be compared with the one taken before treatment began. Hopefully, it will confirm that the chemo is working and that her marrow is not as diseased as before.

Thursday, April 22, 2004 10:07 PM CDT

Wednesday, 4/21 -- We were admitted to All Children's Hospital around 8:30pm and into 2SW-Oncology floor. The doctors had wanted us to come in tonite so Hannah could receive more red blood before her collection. That happened around 3am. They also took a blood sample to see if the shots to help her make white blood cells (Nupigen) were working fast enough. They were! Here WBC (white cells) were 2.9 (it was 1 the day before). It had to be at least 2 to do the collection. Her stem cell count (GDC 34) had to be greater than 20. It was 134 when we got to All Children's.

Thursday, 4/22 -- At 7:45am, we headed down to the MICU for the process. First, Hannah had to have a big catheter into her groin. She had to be sedated, she did not want to be sedated. She fought it hard but finally she did.
The collection process started at 10:10am. Calculated time, based on Hannah's blood counts -- 404 minutes (just shy of 7 hours). We continued to have some problems with Hannah being sedated enough to not move around and endager her catheter. After trying several differnt pain meds, she went down about 1pm and took a much deserved nap, till about 5:30pm. The process was done and the stem cells sent, via courier, to Moffit Cancer Center for analysis.
We had to wait till almost 9pm to find out the results. They were great!!! The minimum amount to be considered "successful" would be 4-6 million stem cells per kilogram of Hannah's weight. Hannah's collection had 24.7 million cells/kilogram. Fantastic!!! The reason being, the more stem cell you can transplant, the faster the bone marrow can recover. Because it was late and considering Hannah's rough day, it was decided it would be best to stay the night in ICU and be discharged in the morning. Grandma Buhrke offered to stay the night so Mom and Dad could get a good nights sleep. Thank you GrandmaB!! Many thanks (and prayers too) to Drs. Rossbach and Petrovic for working hard together to make this happen today. Speaking of which, Dr. Petrovic certainly lived up to her reputation of being a concerned doctor. She will be a very important person in Hannah's future as she will probably be in charge of her transplant.
Again, We thank all of you who pray for Hannah. This shows that God is listening!

Wednesday, April 21, 2004 5:45 PM CDT

Wednesday 4/21 --Hannah received some platelets today. After some confusion, we found out about 6pm that we were headed to All Children's tonite to prepare for her stem cell collection on Thursday. Dr. Petrovic is going to come in special to meet Hannah tonite. She'll get some red blood tonite. In the morning, we will go to ICU to have her femoral catheter put in, then the process will start. It will probably take most of the day to find out if we got enough stem cells. IF we do, we'll be out of there. If not, we'll have to stay and try it again on Friday. So, Here we go! As most of you know, this is a critical step. Please pray that all goes well and we get lots and lots and lots of good clean cells. I'll update again as soon as possible.

Tuesday, April 20, 2004 7:07 AM CDT

Mondahy 4/19 -- Hannah had a clinic visit today. She was a bit contankerous in the morning. Probably due to waking up at 5am and her counts were low: ANC = 100, Hgb = 6.7, Platelets = 6. So, in the afternoon she received 2 transfusions, red blood cells and platelets. She was in a much improved mood in the afternoon. We'll have daily clinic visits now to monitor her ANC level. We won't really know exactly when we're going to do the collection probably until the day before, so stay tuned.

Saturday, April 17, 2004 11:38 AM CDT

Saturday, 4/17 -- Hannah is getting to enjoy the weekend at dad's house. She has been playful and in good spirits. We did have to go to the hospital this morning for blood work. Her ANC 500 (dropping), Hemoglobin 8.6 (holding), Platelets 46 (dropping) all as expected. So, we're good for the weekend. We have a clinic visit on Monday and still look to be on schedule for stem cell collection Wednesday or Thursday. Of course, that all depends on Hannah.
We hope everyone has an enjoyable weekend.

Thursday, April 15, 2004 2:10 PM CDT

Monday, 4/12 -- Hannah was discharged at 1pm, after receving some red blood cells. She was happy to get home. She was been in good spirits (perhaps a bit moody, but who wouldn't be). She has been eating well and drinking better.
Thursday, 4/15 -- Hannah had a clinic visit this morning. Her blood counts were very good, better than we had expected. So, she didn't need any blood products. She will be having blood work again on Saturday. Probably starting Monday, she will have daily blood work so that we can "catch" when her stem cells start coming out. The stem cell collection will proably happen next week (Wed - Thur) depending on her counts. This is a critical step in her treatment process. The collection will be done at All Children's Hospital in St. Petersburg. The entire process will take a day or two. She will be admitted to the ICU to have a femoral catheter (near the groin) put in. Then be hooked to an apherisis machine which will seperate the stem cells out of her blood. A sample will be sent to Moffit in Tampa to determine if there is a sufficient amount of stem cells. If so, we go home...if not, we do the process again. All of this was expected but we were thrown a bit of a curve this morning. Due to political and regulatory issues, while she is at All Children's, she will be under the direct care of their oncologists not Dr. Rossbach. For the collection, that's not such a big deal. However, her transplant will also be done there. That portion of the treatment will take 4-6 weeks. We have grown to like and trust Dr. Rossbach. The fact the he will not be directing her care there is a bit troublesome. We should meet the oncologist who would be caring for her at All Children's, Dr. Petrovich, next week during her stem cell collection. Dr. Rossbach has assured us that even though he will not be directing her care,he will follow Hannah's progress through her treatment there. It's just a bit unnerving to think about Hannah getting used to another group of doctors.
In closing, we thank all of you for your prayers and ask again that you pray for clean and plentiful stem cells and for wisdom for all of her doctors.

Monday, April 12, 2004 9:20 AM CDT

Easter Sunday 4/11 - Hannah woke up to find an Easter basket with some goodies. She especially like the bunny shaped bubble blower (she loves blowing bubbles!). She had a good morning with a long ride outside, in the sunshine. After her nap, mom put her in her Easter dress. We had a little egg hunt outside just for Hannah. She picked up the concept quickly as well as the concept that there were goodies inside the eggs!
Her chemo ended Sunday evening. She has done extremely well with her 2nd cycle of chemo. Very little nausea and has maintained her energy and spirits. Her blood levels seem to be doing as expected but she will get a transfusion Monday morning and then...go home in the afternoon. She'll be free until a clinic visit on Thursday.
We'll try to get a couple of Easter pics up as soon as we can. We hope all enjoyed the day and remembered the true reason for it.

Friday, April 9, 2004 2:40 PM CDT

Hannah started her 2nd chemo cycle Thursday at 7pm.
The blood work done at her clinic visit showed her platelets had risen from 55 on Monday to 120 on Thursday. That shows her blood is doing what it's supposed to. We were admitted around 2pm. She received a couple of hours of IV fluids before starting the chemo. She handled it all with a smile (mostly). It's really amazing. Her spirits were good into the evening. On Friday morning, the hospital had an Easter egg hunt for all the kids. Hannah and dad found quite a few eggs and got some time outside (not easy trailing a toddler looking for eggs with an IV pole). She did get sick once after the egg hunt, not too bad though. After a nap, she awoke in good spirits. She seems to be tolerating the chemo much better than what we anticipated. Her enery and spirits are high.
We trust that all of you will treasure the time you have with your family over this Easter weekend.

Thursday, April 8, 2004 6:53 AM CDT

Today we have a clinic visit and hope to know when we'll start cycle 2 of chemo. Hannah has been doing so well. It will be hard to see her "go down" for the treatment. We don't know what to expect but are trying to prepare ourselves.
On Wednesday, Hannah went on a boat ride on the intercoastal with her mom and Grandpa & Grandma Buhrke. She really enjoyed it, being outside with "the wind in her hair". She has been very playful and energetic. That's what makes going back into the hospital so hard. But this will be our "new" routine for the next few months. We will be leaning on all "Helpers" to get through it.

Tuesday, April 6, 2004 6:59 AM CDT

What a wonderful weekend. No hospitals, doctors or tubes!
It was also beautiful weather in Tampa. Hannah was outside quite a bit..drawing on the driveway, pulling her wagon, etc., the things little tikes should be doing. She really is acting quite normal. We also found out that she likes lasagna (thanks to Ms. Ellen).
On Monday we had a clinic visit. Her platlets were a little too low to start treatment. So, she gets a couple of extra days at home. We're good with that!! We have another clinic visit on Thursday. Depending on her blood counts, we'll probably be admitted (of course, that's what we thought for Monday).
It is 12-15 days after this upcoming cycle that we will go for stem cell collection. This is an important part of the treatment plan. Please pray for "clean & plentiful" stem cells on this first collection so we do not have to repeat.
Thanks to ALL the "Helpers" out there. We KNOW that you truly are helping our little girl with all the prayers and positive thoughts of her recovery.

Thursday, April 1, 2004 6:43 PM CST

Today we went for our first (of many) clinic visit.
Her blood test results came back very good. Her ANC level (measure of her mature white cells) was 1700. That's great, considering it was 60 on Tuesday. The higher the better (below 500 is high risk of infection). Her red blood count was also a little higher than on Tuesday, and her platelets were holding, so she didn't need ANY blood products. We thought she would probably get red cells. This shows that her body is recouping from the chemo and making her own blood. We took a trip to the park for awhile before heading back to the hospital for her 2nd scan. She came through that fine. After getting home,she ate some and she is drinking some now too. That in itself is an improvement. Mom found that juice boxes worked well and tonite, she drank a full 8oz of milk from a bottle. She hasn't done that in over a month.
She is playful and active and sometimes a bit cranky, just like a toddler should be!
Her oncologist, Dr. Rossbach, commented today that she is a fighter and that's a good thing. All of you who know her know she has a strong spirit. We thank you all for praying to keep her spirit strong.
`

Wednesday, March 31, 2004 8:48 AM CST

HANNAH's HOME!!!
She was discharged Tuesday morning about 11AM. She's looked very good and strong the past couple of days. Although, we did have a little scare on Monday. While receiving platelets, she had a reaction. Her head swelled up and she started shaking. The nurses gave her some benedryl, which worked and reduced the swelling.
Otherwise, she's been in great spirits.
Showing us some of the little girl we remember.
She truly seemed to know when we were getting ready to leave the hospital, she was waving and blowing kisses to the nurses, jumping around and just looking like a little girl should (except for the shaved head, but she's still damn cute!) When she awoke at home, she seemed to enjoy getting reaquainted with her "stuff". GrandpaB put new sand in her sandbox and she had a great time playing with her shovels and buckets.
Her MIBG scans from last week were negative. Meaning they will do more scans with a different isotope to try and see exactly where all the tumors are and the effectiveness of the chemo. So, she has those scans on wed,thur,fri. Which means spending most of the day at the hospital. But she will be at home afterwards and we're hoping for a "hospital free" weekend before going back in next week for cycle 2 of chemo, which means at least 4-5 days in the hospital. So, she's getting a little break now. It's good to have our sunshine home.
PS - We've put some additional pictures up, click on the "PICTURES" link below.

Sunday, March 28, 2004 4:51 PM CST

SAT 3/27 - Hannah had surgery today to put in a Boviac.
That's a central catheter that will be used to administer her chemo treatments, blood transfusions, etc. She came through the surgery very well. She ate very well after the surgery and she didn't even need any pain medications afterwards. In the evening, she watched ice skating with GrandmaD and Dad, and had a good nights sleep.
SUN 3/28 - Hannah woke up in good spirits. Had french toast for breakfast. She walked, totally on her own, around the whole floor where she's staying. This is the first time she has walked that much in over a month. Then we went outside for a ride in her little red car. We played for quite a while in the playroom, she knows exactly where that is now, and she loves to go and play. Her hair has started to fall out now. Basically it's like she's shedding. So, we decided we should shave her hair short to keep it out of her food and such. Ms. Kathy did a great job. Hannah's so cute, even with a crew cut! I'll try to get a pic up as soon as possible. Still no word on when we might be going home. It's quite possible that we won't get home before the next chemo treatment. Stay Tuned.
Thanks again for all the support and prayers!

Friday, March 26, 2004 1:53 PM CST

WED 3/24 - Hannah had her first bone scan today. Erica said she woke up from the sedation in a "foul" mood-understandably. But recovered nicely and had a good evening until she got a transfusion starting late at night. During transfusions, they check her vitals every 15 min, then every 30 min which she does NOT care for. The transfusion didn't end till 3am - made for a rough nite for Erica and Hannah both.
THUR 3/25 - Hannah had her second bone scan. Woke up a bit better than on Wed. We got her outside in the afternoon, riding in her car. She actually got a good nights sleep.
FRI 3/26 - Up early, 6 am. In good spirits, for a little bit. Then her PICC line pulled out (used for giving her IV meds and fluids). She is scheduled to have a Broviac (central line) put in by Mon. Later in the morning, we got her outside again. She did a little walking, a bit wobbly, but walking nonetheless. Overall, her spirits are good with some crankiness thrown in at whim. She looks much improved from a week ago. It looks as though we'll be in the hospital till the first part of next week, at least.

Wednesday, March 24, 2004 3:23 PM CST

Tuesday morning: Hannah received more plateletts.
She got to enjoy about an hour in the beautiful day outside.
Grandpa pushed her around in her little car. She had a restful evening. She did drink a couple oz of milk. She is off IV fluids, so, we hope she will begin to drink more on her own. She still has the feeding tube in. Her eyes appear to be doing better.
Wednesday morning: She was a bit cranky. Mostly because she couldn't eat for 6 hours before her scan (8a - 2P). She will have this same scan done for the next 2 days. The scan should show active tumor sites, we won't have results till beginning of next week. Going home is still up in the air. Oh yeah, in addition to all this, we think she's teething! But in good spirits considering.

Monday, March 22, 2004 2:55 PM CST

Sunday was another good day for Hannah.
She received a blood transfusion (her 3rd so far).
We got her outside, riding around in her little car.
She just loves that. They will be doing a special scan
this week that should show where active tumors still are.
It is done over 3 days and she will have to be sedated
each time. Her blood counts are still very low. We had hoped to be going home at the beginning of the week. It's more likely to be the weekend now, maybe. We are touched each day by all the notes left in the guestbook. Some of whom we don't even know, but still appreciate the prayers.

Saturday, March 20, 2004 4:02 PM CST

Yesterday was a great day for Hannah. She has been eating a little, still not drinking though. She has tolerated the chemo treatment well. She only got sick 2-3 times. She has shown signs of her "old" self by talking some, playing some.
We saw some smiles too. That was great. It was so good to see some positive improvement. The past couple of days, she's been more alert and responsive than in at least a week. Thank you all for your prayer and support and the kind words in the guestbook. They give us strength, and make us cry a little too. It's amazing to see how many people are praying for our little girl.

Thurday, March 18

Today was a good day. Hannah was more alert today than she's been in a week.
She's about half way through her first chemo treatment and seems to be handling it fairly well. Her mom said she ate tonite! Yeah! It's been at least 2 weeks since she's eaten. She even got out of her room to play a little. We see this as definite upswing and pray that it will continue.

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