History

Wednesday, November 2, 2005 7:29 PM CST

Halloween was our 1st Holiday without Madi, and it was very hard. I don't know how I'm going to get through the rest that are right around the corner. I had bought Madi an angel costume, not knowing by Halloween she would be a real Angel. In 2 days it will be a month already that she passed, and as the days go by, it doesn't get any easier. There is a huge hole in my life, and I don't ever think I will ever be able to do enough to stop thinking about her. I have gone out to apply for jobs, hoping if I go to work it will keep me busy for a few hours in the day. Aaron has gone back to work, and Taylor back to school, and I sit at home alone, constantly thinking of Madi. I won't ever be able to make myself too busy to not think of her, but I need to find something to fill my time so I'm not constantly reminded of the loss of my baby, and the emptiness in my heart. I miss everyone back home, but it is still too soon to go home. We have decided to make Sterling our new home. Madison was finally laid to rest here, and I go to her grave site to sit and talk to her daily. It's a short walk, and I like being close, even though I know she has moved on from that body, and into Heaven, it still gives me some comfort and some closeness to her. I will never have anymore children, and that's ok because Madison was a special child that can never be replaced. I miss her sssooo much, my heart still aches for her, and I know it always will. It's hard for me to look at another blue eyed, blond haired little girl without breaking down in tears, thinking of her. I wanted to fight for her life, and I did, but it was just so short, and I didn't get to really say goodbye, not the way I wanted to. I talk to her, and I plead w/ God daily to help me through the day. It's so hard to go on without her. There is a place called House of Hope here, and there is a bereavement support group for families that have lost loved ones to cancer. Aaron and I are going to try to go to see if it will help us cope with our loss. Taylor is doing ok. He talks about her from time to time, and we look through pictures regularly. He seems to like his new school, and has made alot of new friends. I am so thankful for that, and for Aaron's family. They have been there to comfort us, and help us through the days. They are wonderful, and I really feel that is what we all need right now. In a few months we are going to try to go home to move our things here to Sterling, and try to put the trailer up for sale. To me that is like the final chapter in our farewell to our daughter. We brought all of her things here from New York, and they are still all packed away, except for her blanket and a few of her dolls, that I sleep with, or hold throughout the day. I haven't even been able to go through those things, I know it will be so very difficult to go back to Louisiana, back to our home, and look at her room she never got to return to. Or even our carport she loved to play on, or the yard w/ the swingset we got her for her birthday this year. It will open all of our wounds, and it will be a very difficult thing for me, as well as Aaron. I dread it, but it has to be done, eventually, just can't handle it now. Thank you for all the entries in the guestbook. I read it daily, but don't want to depress everyone with my hurt everyday, so I will try to update from time to time. Thank you for your continued prayers, and for thinking of our family. God Bless!

Tuesday, October 25, 2005 11:57 AM CDT

It has been 3 weeks, today, that Madison so suddenly left. That is whe she began her journey to everlasting life, with no pain, no cancer, just wonderous heaven. It feels like eternity already. My heart aches for one more hug from her, or to see her beautiful smile or laugh. My life is so empty, and I am lost. For the past 2 years, I have had to fight for her and care for her, and now she is gone. It all happened so suddenly. We knew she wasn't doing well, but we never gave out hope until that very morning when the doctors took us to the conference room to tell us that was going to be the day she would die.
I never pictured that the end would happen like that. After Madison was diagnosed, and we were told she had a 35%-40% chance at 5 year survival, I tried everything in my power to make each day fulfilled, and push for the next. I know she knows we loved her, and we did everything we could for her, but I always thought when the time came, that she was in her final days on this earth, that we would have the chance to take her home, and she would be surrounded by her family, and we would get to tell her our final words, and most importantly Good-Bye.
Once we went to the PICU, she had to be incubated, and right before that, those were her last words we would hear her speak. That was the last time I got to see her moving and her eyes open. I didn't know it then, and God do I wish I had. It's so hard to watch your child slowly die in front of you, but that is exactly what we did, without knowing that was happening. Some of my family and Aaron's mom got up there in time to say goodbye, but she wasn't awake or alert to know. I pray that the Angels waiting to take her to her final destination have told her, and she knows we were there to spend every last minute we could with her. Taylor came also before she passed, on Tuesday morning. We told him Madison was dying and that this would be the last time he would see her or get to talk to her before she passed on and went to heaven. We held him up by her bedside, and he hugged her and told her he loved her. He asked alot of questions and I did my best to answer and console him. He made me very proud, he was so brave. He is my rock, and my purpose to continue each day through all the pain I hold in my heart. I thank God for him everyday, many times a day. I also thank God for the very short 4 1/2 years that he gave me with Madison. She taught me more about life in her short time than I think I would have ever learned on this Earth. She touched so many people's life that we met along the way, and I know her purpose was to do all those things. I wanted eternity with her, and one day I will get it. I will make sure our lives are lived the way we are suppose to, through being people of God, to ensure my family will be one again. But this time we will all be filled w/ joy and happiness, and no longer feel pain. I hope I can have the courage, and pray for my sweet angel, as well as our Father to help me each day. I miss her, and still feel so empty. I am taking each day, day by day, and doing the very best I can to deal with this huge loss in my life. I know Taylor is relying on me to help him, and he still has alot of pain. He is what gets me through the day, and Aaron as well. Our family has been through hell and back, and now sitting back and thinking over our last few years, I know together we will make it. There are so many things that constantly remind me of my sweet Madison. And I am sure I will always be reminded of her throughout my life. She was an Angel on Earth, and I know she is an Angel in heaven, watching over us now. Thank you all, for opening your hearts, and taking your time to pray for our family. My eyes have been awakened by a life I never knew exsisted before, and I will never forget all the wonderful friends and beautiful children, whose lives still continue and whose battles still fight on. I pray for you all daily, and check your sites for updates. My mind and my heart will never forget, and I will do my best to continue to help or be a part of support for families whose lives have been touched with childhood cancer, and all those that will become effected. God Bless!! I will try to update from time to time, to let everyone know how we are doing, thanks for checking in and helping our family through this most difficult time!

Thursday, October 6, 2005 11:14 PM CDT

I can't write alot right now, my heart is crumbled. My beautiful baby girl is gone and I am hurting so deeply. Madison went to heaven on Tuesday, at 10:45 am, and it is all still too shocking to put into words the grief that I feel. I will try to post the information about where and when Madison will finally be laid to rest. Today was the 1st day I have been able to have the heart to look at her page, and I thank everyone for all there kind words and thoughts for our family during this very difficult time. Thank you for following our families journey, and God Bless!

Funeral Arrangements for Angel Madison:

McDonald Funeral Home
505 1st Ave.
Sterling, IL. 61081
Viewing on Sunday from 1 pm-3pm

St. Mary's Catholic Church
606 Ave B
Sterling, IL. 61081
Mass and Burial on Monday @ 11:00 am

Madison also has a donation account still open at Bank One for anyone wanting to make contributions in that way.

Sunday, October 2, 2005 5:41 PM CDT

this one is pretty simple because dads writing it. If you pray, do it now, for her and all the other kids in this ICU. If you don't, say a prayer anyway. For all our family and friends in LA. thank you for thinking of us in your times of trouble. All the family in IL, we love you all and miss you dearly. And to all the people aroung the world that have gotten to here about our girl thnk you for praying for her and giving all of your positive thoughts. May Taylor, Dylan and Melissa make home safe from Maine. Love Aaron Goodnight. P.S. may everyone have safe flights as well.

Friday, September 30, 2005 12:16 AM CDT

Thanks to all the prayers and thoughts, and for everyone supporting our family. It was wonderful to read all the posts in the guestbook. Yesterday Madison was transferred to the POU(pediatric observation unit) for one on one care w/ a nurse. Yesterday morning she was having problems breathing so they put her on oxygen. She is still in alot of pain, but seems to rest a little better now they started the oxygen. She got up about 1:00 am w/ fever and lots of pain. She stayed up most of the morning w/ the pain. They are still giving her fentanyl, but she was halusinating before when the dosage got high, so they don't want to up it too much. She also had a CT of her head yesterday. Her eyes are completeley filled with blood where it would usually be white. They were worried the infection may have gotten into her brain, but I am thankful to say it has not. They think the blood is just due to her coughing so hard, and her platelets continuing to drop daily. Her stomach is still really swollen, and all we can do is comfort her as much as possible. All we can do now is wait, and pray for her counts to recover and her pain to cease. Day by day, it gets so tough to continue to see her this way. I can't do anything to relieve any of this and it hurts me so much. Taylor went away w/ Melissa and Dylan for a fun weekend away. Thank-you so much!! He really needs this, and I am thankful to have Aaron here w/ me at the hospital. These are very difficult and scary times, and it's hard to be alone dealing w/ it. Aaron's mom, Granny Helen will be here on Monday, thank God. Her help is desperateley needed right now. Please continue to pray for Madison. The Lord has seen her and our family through so many trying times, and I am praying that he leads her through all this as well. Thank-you for checking in, I'll try to update as much as possible. God Bless!!

Wednesday, September 28, 2005 7:29 PM CDT

I haven't updated because we have been dealing w/ alot. Madison has pneumonia in both lungs. She also has a infection in her colon. She has been in alot of pain, and is really doing bad. This is the most pain I have ever seen her in. They started her on moraphine, then dilaudid, now she is on fentanyl. It seems to be helping more, and she seems more comfortable. This is the worst news, but it gets even worst. We finally got ahold of Dr. Rozans from Tulane back home, and her last remaining stem cells are gone. They were lost when the hurricane hit New Orleans and Tulane lost electricity, thus they were defrosted and now are no longer any good. I am pleading for anyone reading this, and anyone you can get, to please PRAY for Madison, because she has alot going against her, and she needs all the prayers she can get. Her WBC is still 0.1 . She now has 3 different lines so she can get all the meds they are pumping into her poor little body to try to help her through this. This is the scariest time throughout her treatment, and I am so very afraid. She was put on an innebulizer(sp?) tonight due to crackling noises she was making while sleeping. It is really bad. I'm not sure when I will get a chance to update again, but please pray for her. I have seen the power of prayer before, and I feel God is the only one who is going to get her through this. She is on every medicine she can possible get, so now we have to sit and wait. This is the worst part. Please pray for my baby!! God Bless!!

Sunday, September 25, 2005 6:56 PM CDT

Madison had a really bad day today. Her WBC is back down to 0.1, and she has had more severe diarrhea, very watery, and pain in her stomach. She was in alot of pain throughout the day. She received moraphine for it, and I kept putting warm compresses to try and alieviate the pain a little. She ran a high fever also. All of her cultures cintinue to be negative, and the CMV is also negative. That is a blessing, yet worrisome. We don't know what is causing all of this. She went in for a x-ray of her abdomen, and will have a CT tomorrow. I am so scared. I pray that it is not the worst case scenario. She was so uncomfortable the whole day. She still has a cough as well, which is still a puzzle as well. She just started w/ that 3 days ago, and it persists, even though her chest x-ray was good. She also received another platelet transfusion, as well as a blood transfusion. She is really down, and it worry's me so much. I don't really have too many answers, hopefully we'll get more tomorrow. Please pray for her recovery, and for the pain to go away, and for it to turn out to be nothing. Thanks for checking in, God Bless!!

Friday, September 23, 2005 8:29 PM CDT

Madison is getting better. Her WBC is still low, only 0.2 but up from yesterday, so we pray this will continue to rise. She still has vomitting/diarrhea issues, but that is also improving. She is still running fever, but so far her cultures remain negative, thank God. They are retesting for CMV, no results yet, but we are praying they will also be negative. She is finally eating a little each day, and for the most part holding it down. They started TPN nutrients on Wednesday, along w/ many supplemental fluids like magnesium, calcium, phosphates, potassium, sodium, etc. to try to get her electrolytes/chemistry all back to normal levels. She is now on 3 antibiotics, Cipro, Cefepime, and now Vancomyacin. They added Vanco yesterday due to the fevers continuing. It has been a long week, but I am hopeful we are over the hump, and she will be on the recovery side now. She is looking better, and has more energy. She was really down and out there for awhile, she was really scaring me. She started having a cough yesterday about 4 am, and it is pretty persisitant. Her platelets were low again(2nd transfusion in 5 days) and while coughing she coughed up blood. This was a first for her, and it really alarmed me. She received the transfusion of platelets, then later they took her down for a chest x-ray, and everything looks good, thank God!!! She is having alot of bone pain also due to the GCSF shots, but warm compresses for the most part have helped. She has received moraphine on Tuesday/Wednesday because the pain was so bad she woke up crying and refused to stand or walk because she was hurting. Thankfully yesterday and today the pain has gotten better. Yesterday was the first time she even wanted to go to the playroom, which is VERY unusual for her, she normally stays in there more than her room. She is smiling again, which is always a blessing to see.
Taylor has been a little bummed and emotional lately. Him and Aaron walked in the hospital room at the same time Madison was coughing up blood, and he was totally freaked out. Aaron took him to the playroom while the doctor and nurse came in to check her out. This all happened yesterday, and today he went to school in a sad mood, and talked to his teacher about it all. Monday we are going to talk w/ the counselor at his school. His teacher recommended it, and if he wants to, I guess we will look into it. My heart breaks because I can't be in 2 places at the same time. My son needs me, and my daughter. It hurts me that he doesn't talk to me about all this, and that he has been upset even at school. He has had to endure too much for a 9 year old. I pray for God to send angels to watch over him, and to ease his mind. I love my kids so much, and I am doing everything I can for them, but it doesn;t seem to be enough. The only thing I can do for them is hold them, cry with them, and reassure them. I wish I could take away all the pain for all of us. I wish things could be more normal, like other families, but I try to explain to Taylor we have to stay here for now because this is where Madison has to be. She can only get the medicine she needs here. It won't be forever, and as soon as possible we will go back home. They try really hard to make it as comfortable and fun of a stay here at the Ronald, but like he said, it's just not home.
Speaking of home, horrific hurricane #2 to devastate Louisiana is happening at this moment, Rita. We are on the east side this time, which is the worst side. I worry about our house flooding. If I had all my pictures, that would be the only possession I would truly wish to have saved from flooding. A house can be rebuilt, and our family is all safe, so that would be all I wish to be saved if flooding does occur. I am so very greatful we are here, and Madison is continuing treatment, and hopefully will finally get to the antibodies. Sorry for the grim entry, that has been the general mood around here for awhile. But I still have Faith, and Hope and I will not give that up. Please say a extra prayer for our family, Madison's recovery, and poor Taylor. I came home for the night to spend it w/ him. Tomorrow I will take him to a movie before I go back to the hospital w/ Madison. I know he needs me to show him some attention right now. I get so caught up in caring for Madi, I don't spend enough time w/ him. It's just so hard to not be there w/ both. I feel their pain, and try everything I can to ease it. Thanks for checking in, God Bless!!!

Monday, September 19, 2005 10:57 PM CDT

Madison was admitted back in the hospital yesterday. She started running fever on top of everything else. She is now down to 12.9 kilos. This is the least she has weighted in 2 years. She is not eating, and barely drinking. She went home on Friday from clinic w/ a huge bag of fluids, but it didn't seem to help. She is still vomitting and having diarrhea multiple times per day. Her chemistry is all out of whack. Please keep her in your prayers, thanks for checking in, God Bless!!

Thursday, September 15, 2005 12:06 AM CDT

Sorry for the long wait between posts. Madison has really taken this round of chemo hard. She has been throwing up and having diarrhea multiple times a day. She really wasn't holding anything down. She hasn't even attempted to eat anything for 3 days now. Yesterday we finally seen a sunnier day. She only threw up about 3 times, and about the same for diarrhea. Believe it or not, that is an improvement. She has also been drinking alot, and holding most of it as well as her meds down. She went to clinic on Tuesday for counts and to get her electrolytes checked. To no surprise they were very low. She received fluid all day, then they allowed her to go back to the Ronald. She and I have been in the room all week. She doesn't even play in the playroom at the hospital. She just lays on me or watches TV in a chair. She pretty much stays in the bed at the Ronald. Today, she woke up and said she was hungry, she asked for Daddy to make Gumbo. So he is now making that for her. She is staying up and watching TV a little more today. So far she has only thrown up once, and only one spat of diarrhea as well. Her electrolytes were better yesterday, so we have the day off from clinic today. She has to go back in tomorrow for another check up. She is scheduled for scans/MIBG for the 20th, and we will see how she is doing so they can schedule her soon after to start antibodies. She has lost weight again. She is down to 12.9 kilos, UGH!!!! I am thankful she is drinking again and holding it down, and I am hopeful today she will start to eat again. She has been through so much, it hurts my heart so to see her like this. Two more children that we got to know well lost there battle w/ cancer this week. It has been so grim in the House lately. I just continue to ask God to help Madison, and keep her strong to continue fighting. Taylor, and the rest of our family as well. One of the kids that passed, Taylor was very good friends w/ his brother. He talked to Taylor about it, and now Taylor has been scared the same thing is going to happen w/ Madison. I held him and cried w/ him and told him we are doing everything we can for Madison. Sometimes these things happen, but we have to pray and be strong to help Madison continue her fight. He asked if she was going to die, and all I could say is she is doing well right now, and the medicine she is getting is making her better. It's so hard to talk to a 9 yr. old about this. There's so much I can't tell him, yet there's so much he wants to know. I don't want to lie to him, we all don't know what the future holds. Well, Madi is calling so I need to go and hold her. She wants me there by her side, and that is where I want to be as well. Please continue to keep her and our family in your prayers. Everyone back home continues to be in ours, as well ! Thanks for checking in!!

Thursday, September 8, 2005 3:31 PM CDT

Madison is doing well with her chemo. She started on Tuesday and will finish tomorrow. She received Carboplatin Tues. and Wed. only, and Irrinotecan Tuesday-Friday. So far she is handling it well. She has gotten that grayish tone to her skin again that she normally does when getting chemo, along w/ darkness under her eyes. This is all the ususal effect though, of getting chemo pumped into her poor little body. She is starting to sleep more, and has just started feeling nauseous and not wanting to eat too much. Also all normal side effects. It has just been a nice break from all this for awhile. She had gotten her color back in her face, and her eyebrows/eyelashes/and hair on her head had come in. We got the pathology reports back from the lymph notes removed during her last surgery, and 3 out of the 5 places where lymph nodes were removed still had active Neuroblastoma. Not exactly the news we wanted to hear, but at least it has been removed. We are praying the chemo will get the cells not visibly seen. Dr. LaQuaglia said he removed everything, that is all that he could see. This is just such a HARD cancer to fight. After she recovers, in a few weeks, she will have all of her tests/scans redone, and we will finally move on to antibodies. We are continuing to monitor the CMV and watching for any complications that may arise. It won't really arise until her counts have bottomed out, and that will be 5-7 days after tomorrow. We will watch, and pray! We are hoping there won't be any problems.

On a lighter note, Taylor started his first day of 4th grade today. He is growing up so fast. He seems to have enjoyed it. He said there are 32 kids in his class! That's alot compared to the schools back home. He met a few new friends. I am glad he gets to go to school, so he can get out of the Ronald, and be like other kids for awhile. He has really been wanting to go home, and asking about when we would get to go back alot lately. Now, due to Hurricane Katrina our hospital back home in New Orleans will not be reopened for awhile, so we will be here alot longer than anticipated. I am ready to go home as well, but I am so releaved we were here instead of home, trying to look for a treatment facility to take her to. Our home came through everything good, thank God, and my sister and her family are staying there due to the loss and damage to their home. All of our family are displaced, as well as alot of friends, and our hearts, minds, thoughts, and especially prayers go out to them and everyone else that has had loss. We were glad to see the entries in the guestbook from some of our friends back home, and getting to finally talk to some of my family. It is so hard to sit back and watch the tragedy on TV, and be so far from home. We feel so helpless. Judy and Dara, I wish you all luck and prayers. I know you guys will be out of work fo awhile, but we hope to see you all when we return to Tulane. It's still our home, and we miss you guys SSSOOO much. Sloann is great, but it's still not home. Tell everyone we send our thoughts and prayers, and Madison says hello. Tell Mrs. Rose ans Mrs. Nadine she is ready to go back to work. We love you guys!! Last night we got to go and see the broadway play of The Lion King w/ The Ronald McDonald House. The kids really enjoyed it!! Well, that's about it! Thanks for checking in, God Bless!!!

Saturday, September 3, 2005 0:11 AM CDT

We are all fine. We hope everyone we love at home, have their family with them. We miss you all and hope you guys have strength to get through this horrible time. We can only get our news from CNN and FOX. Everyone on Grand Isle we pray for all day. May GOD bless. Love Madison, Taylor, Tanya, and Aaron

Saturday, August 27, 2005 7:15 PM CDT

Madison is continuing her recovery from surgery, and amazing us all along the way. She was transferred back to Memorial Sloan Kettering on Thursday to the POU (Pediatric Observation Unit). On Friday her NG tube was removed, but her pain meds were uped due to pain in her stomach. Last night she was having alot of pain, mainly due to gas she was having. But that was a good thing, because everythings starting to work as it should. She got up and walked around a little yesterday, and was more alert and stayed awake for longer time periods. She also ate 1/2 a slice of NY pizza, which is rather large, so that was really great to see. Today they removed her epidural and cathedur, and was put on moraphine through her IV. She only had to have 1 dose, so they swithced it to as needed instead of every 3 hours. So far no more has been needed. She is eating more today, and drinking good as well. She has been getting up to go to the restroom, and sittig up in the bed playing and coloring. Yesterday, Aaron got her to walk a good bit around the halls, and he said that is his goal for today as well. She is still sore, but improving greatly each day. Dr. LaQuaglia said she will probably get to go home on Monday!!!! Oh, and she has had a bowel movement everyday since Thursday, which is great because it means everything is also moved into place and assumed it's proper functions. It took her 3 days after her last surgery for this to happen, so it's just another amazement to us at how quickly her recovery has been this time. We spoke w/ Dr. Kramer today as well, who is a member of the neuroblastoma team at Sloan, and they have decided to give her a week to fully recover before doing this last BIG chemo before antibodies. We will go into clinic to discuss the chemo they will be using for it next week during her post-op visit, and it will probably be Monday-Friday of the following week. They are trying to be extra careful w/ their choice of chemo due to the problems she had w/ CMV from the last high dose chemo after her first surgery. Right now they are leaning to Irrinotecan/Carboplatin. She has done 2 rounds of Irrinotecan since her last surgery, and after the problems w/ the Irrinotcan/Temozolomide and CMV. The Carboplatin is not suppose to be as harsh on the lymphocytes, as the Temozolomide was, so they feel her counts won't bottom out as bad, thus HOPEFULLY not to reactivate(or at least not too severly) the CMV. This will be a very scary step for us. We are praying that God will guide her through this, as he has so MANY times before. We are greatful for all of the accomplishments Madison has had to go through, and has done so greatly with. This week at the Ronald McDonald House we know of 4 children who have lost their battle w/ cancer. Two of which we got to know personally, and one of which, David, who was here for surgery for the removal of tumor (Neuroblastoma) after only 7 months of being in treatment. We got to know his wonderful family, and truly grieve for them during this horrific time. I ask everyone to please say a prayer for their family, for God's arms to embrace them and comfort them through the next few days while they adjust to their new lives without their beautiful baby boy. While Madison was in the PICU, I got to speak w/ them and see David, and they were so full of faith and love, and so generously thoughtful to come over and check on Madison and bring her presents. They are truly inspirational. It's so hard living under one roof with so many families and children battling for their lives. It's not like at the hospital at home, where you go in, get done what needs to be done, then go home. Occasionally you hear of someone loosing their battle, and you pray for them and their family, but then you go on. Here, we are all like family. We get to see our children laugh and play through their good times, then we grieve w/ our friends through the bad times, because they have become like family, like one of your own. We never know what will come each day, that is why I try to welcome each day, thank the Lord for all of our blessings each day, and most importantly cherish each day with my children. They are my purpose and they are what gets me through each day. If anyone would like to visit David's website, to offer words/prayers to his family his website is: www.caringbridge.org/fl/davidjourneynorris. Thank-you all for checking in, God Bless!!

Wednesday, August 24, 2005 9:39 PM CDT

Thank God, and Dr. LaQuaglia, Madison is PICU recovering from a very successful surgery w/ NO complications or problems. He got everything out and didn't see anything else that needed to be taken out. He said he never even had to touch her right kidney, and it looked pink and was working. It is significantly smaller than the left one, but it only functions @ 10%, but thankfully it is still functioning due to the damage from her original tumor. We are so THANKFUL, and feel truly blessed and relieved she came out of all this so well. THANK-YOU all for the prayers and good thoughts, our baby is definately loved and the power of prayer is wonderful!! She will be having the breathing tube taken out by tomorrow, so hoppefully we will be back @ Memorial Sloan Kettering sometime tomorrow as well. She was in surgery from 11:30 am - 5:30. The first hour was to receive an epidural to control the pain, the rest was God's work and Dr. LaQuaglia's skill! I pray this will be her last surgery and she now has all the cancer completely out of her body. We still have 1 more round of high dose chemo, then antibody therapy. We will get a complete work up of scans, etc. again before beginning antibodies, and I pray we will be told that Madison is again listed as NED (NO EVIDENCE OF DISEASE), which is equivilent to remission for Neuroblastoma!!! I have to get back to the hospital, but I wanted everyone to know the wonderful news, and to thank you all for continuing to pray and support Madison and our family!! May God Bless you all ten fold!!!!!!!!!!!Praise The LORD!!!

Thursday, August 18, 2005 7:36 PM CDT

Aaron and Taylor made it home safely Tuesday afternoon. He is franticly trying to get things together so they can return on Saturday. It will be a long drive, I pray he makes it back safely. We miss them already. Madison continues to do well. Her platelets were up to 96,000 yesterday, and her HGB is over 10 and WBC is over 5, so she is still recovering and her counts continue to rise. Yesterday she had her CT and bone marrow biopsy/aspirates. I pray all will be good news on Tuesday when we return to the clinic for pre-surgery testing. She has to go in to see the dentist on Monday to have a cavity filled. That's why she has been having problems w/ her tooth. She has been sore yesterday and today from her BM's. They do it in 4 areas here, 2 on the front hip areas and 2 in the back hip areas, so she stays pretty sore for a few days. We went for a walk today though, so she is not as sore as yesterday. She was pretty grouchy and sleepy yesterday too. We stayed around the clinic about an hour extra before walking back to the Ronald. She didn't want to stay in her stroller, and she was still groggy from the anestesia she received. She's better today though. She's back to her friendly, happy, full of love self again. Which I am so happy to see.
For the rest of the week I will take her out to the park, and get her out as much as possible, knowing she will have to go in the hospital for surgery on Wednesday. Well that's about it, thank GOD!! Uneventful days are a-okay by me, unless they are good events of course!! Thanks for checking in, God Bless!!

Sunday, August 14, 2005 6:55 PM CDT

Madison, as well as the rest of the family are doing great. On Thursday we enjoyed an evening game watching the Yankees. We all enjoyed it very much. Taylor was in shock, he got some autographs and we enjoyed the game against the Texas Rangers in some very awesome seats right behind home plate. We were very fortunate to get tickets from the hospital's playroom, and boy was it wonderful. Madison was a little cranky on Friday when we went in to the clinic for CBC and check-up, being that she stayed up until midnight. Her counts are climbing, and her platelets remained at 86,000. Her weight was 14.2 kilos, which was also great to find out. Later Friday evening after a nap, we all enjoyed an outting to Central Park w/ the Ronald McDonald House. We all played baseball, and all the kids enjoyed getting out and running around. Saturday Aaron and the kids went to the park while I stayed and did laundry and cleaned the room. Saturday evening we enjoyed dinner w/ everyone in the diningroom. Dinner was provided by Dallas BBQ, which was fantastic, as always! And today there was a movie down in the livingroom. We had a nice week/weekend. Tomorrow Madison has a dentist appointment @ 9:00 am. She has been complaining of her tooth hurting for awhile, but we were waiting for her platelets to come up. We don't quite know what, if anything can be done right now due to her surgery coming up, but we are at least getting it checked out. She also has to get a CBC done. On Tuesday Aaron and Taylor will be flying home. It will be a much quicker stay, due to Madi's surgery being on the 24th, but we need to get things together for Taylor to start school. They start the week after Labor Day here in New York, so it's right around the corner. I still can't believe we have been her for 3 months already. I am praying all goes well with Madi's surgery, and we can get her next round of chemo, and that she recovers well from that, so that we can finally get her started on antibody therapy. I haven't taken the time to update pictures, but I will try this week. Madison also has to go in on Wednesday for CT scan and bone marrow test, then the rest of the week is our to enjoy. I want her to enjoy it as much as possible before she has to go back in the hospital. I pray she will not have to stay long, nor have any problems w/ CMV after to prolong her stay like the last time. Thanks for checking in, I'll try to keep everyone updated. God Bless!!

Wednesday, August 10, 2005 8:26 PM CDT

Madison is doing great. She is not having anymore diarrhea, nor any vomitting. She is eating good as well. She has been enjoying the activities they have been having here at the RMDH. Yesterday we all got to go with some other families on a sightseeing bus, that brought us all around NYC and some of Brooklyn. We sat inside the 1st half of the trip, then they switched out, and we rode on the top with no cover, on the way back. It was a double decker bus. It was really great. We even got to see the Empire State Building at night for the 1st time, all lit up. I took some pictures, and I will try to get to the computer lab tomorrow to update them and put some of our recent events. Tonight they had Bloomingdale's come and host a fun night for the kids. They had face painting, tattoos, puppet making, decorating cookies, and they played limbo and musical chairs. It was a fun night for sure. Tomorrow evening, the hospital's child life dept. gave us tickets to go see a yankee's game. Taylor is pretty excited about that, and Madison as well.
We also found out today that Madison will be having her 2nd surgery, and hopefully her last, on the 24th of August. She will have scans next week, and pre surgery testing. We are praying everything will be good on her scans. She hasn't had any since April, so we are eager to know the results, and also for her to get this surgery done. Her platelets already are at 86,000. I am so thankful they are getting back up higher, and I'm sure they will continue to rise now that she is off the Gancyclovir(CMV Med) and recovering from her last round of chemo. She will be having her MIBG scan right after surgery, so we are praying they will find NOTHING at that point, and she will be declared NED once again. Please continue to pray for her continued good health, and that she comes through this surgery well also. Thanks for checking in, God Bless!!!

Friday, August 5, 2005 12:25 AM CDT

We had a wonderful visit w/ Grammy Helen over the weekend. We all got out and went and seen the Statue of Liberty, and rode the Staten Island Ferry. It was GREAT!! We also got a visit from Destiny's Child. That was awesome as well. They came to The Ronald McDonald House, and there were alot of cameras and people there to tape/photograph their visit. Madison got chosen as one of the house guests to sit at the table w/ them, so they said hello to her and Beyonce(?), said hello pretty girl! It was great. They were suppose to make cookies w/ the kids, but everyone was all around them, and people were yelling for them to look so they could get a picture, it was very chaotic. Madison sat beside Ritchie, our fellow Louisianian, and we saw him on the news that night. Madison was more interested in the cookies. She wasn't even bothered by everything else going on. She made a very colorful cookie for Grammy Helen, full of food coloring! Then when we went back upstairs she wanted to see her eat it. I'm sure it was wonderful! Grammy also watched the kids on Sunday so Aaron and I could go out to eat and watch a movie. We all enjoyed her stay, and wished she could have stayed longer. She left on Monday.
Madison has been doing well. She started w/ diarhhea a few days ago, but it has only been 2 or 3 times a day, so that is not too bad. She has also vomitted a few times, but also not that bad. She is starting to get the after effects of the chemo she finished last Friday. She only has one more day, tomorrow, to go in for the Gancyclovir for the CMV. After that she doesn't go back to clinic until Tuesday. Her counts have stayed good so far. She hasn't gotten neutropenic, and her platelets are maintaining around 50,000. Next on the plan is to wait for her counts to come up, so they can schedule her next surgery. She will get a complete round of scans/tests prior to this. Her hair is starting to come back in. But I'm sure it will fall out again. She's still beautiful to us though! She is gaining weight. Last check on Monday, she was almost back to her pre-surgery date. The Megace must be working. She is eatting well. Thanks to everyone who signed in the guest book! Thanks for checking in on us, and for all the prayers. Madison is a true testament to answered prayers!! God Bless!!!

Tuesday, July 26, 2005 3:19 PM CDT

Madison has been doing well. She started chemo today, only irriontecan. She will receive an hour transfusion for 5 days. On Friday she will have to be admitted over night for her final dose on Saturday. Grammy Helen will arrive Friday afternoon, so it's a bummer that she will be in the hospital on Friday, but praying all goes well and she will get out on Saturday after her last dose. She's only staying until Monday, so we want as much time as possible for visiting w/ her. Maw Maw Crystal sent a care package from back home full of supplies that were much needed, THANK_YOU!!! Mrs. Carolyn sent a wonderful poster of pictures and good thoughts from our Holy Rosary Family!! Thank-you, Madison and Taylor though it was wonderful, I thought it was beautiful. Thank-you all for your continued prayers and thoughts. We miss LA SSOOOOO much. We are all ready to be home, but hopefully she will get her 2nd surgery soon after this chemo, then 1 more round of chemo, then on to antibodies. It sounds so easy and short, but as we have lived these past 2 years of treatments, you never know what each day will bring. I try to keep telling myself that, and just take each day, one at a time. We know we are where we need to be right now, and we are doing whatever we can to get Madison cancer free.

There are alot of activities lately at the RMH. There has been a dinner/BBQ alot this week, and today we are going to the Central Park Zoo. Madison is very excited. I have some new pictures that I will try and put on the website tomorrow. Sorry for the long pause in updates. We have been trying to spend as much quality time together and I haven't really gotten on the computer alot. Thanks for checking in on us, and your continued prayers and thoughts. Oh Madsion said to say hi to everyone @ Tulane. I told her that Miss Dara signed her guest book, and she smiled and was happy. We haven't forgotten about Ya'll! Hopefully a few more months, and we will fly back south!! We are all home sick!! Til next time, God Bless!!!

Monday, July 18, 2005 5:24 PM CDT

We went into the clinic today for Gancyclovir, and a CBC. Madison's platelets have maintained on their on, still at 50,000. That was wonderful news. But she was not able to start chemo due to her WBC being low, as well as her ANC being 200. She has to stay in the room, and is not too happy about that either. She started her GCSF shots, and will continue until Thursday when they will recheck her ANC. Hopefully she will be able to start chemo next week. It has been awhile that she has had to stay away from others because of counts, but we are trying to keep her home, and out of the hospital as much as possible. She wears a mask at the clinic, so she gets to play a little in the play room when we go. They just have alot of kids here at the RMH, and we don't want to take the chance of her getting anything. We are happy to see Granny booked her flight, we all await her visit. The kids are really excited. Well, that's about it. Gotta go back up to keep Madi busy. Thanks for checking in, God Bless!!

Saturday, July 16, 2005 1:31 PM CDT

Madison is enjoying being out of the hospital, and back at the Ronald McDonald House. Yesterday they had a trip to a baseball game, and she enjoyed the outting very much. She still has to go to the hospital each day for Gancyclovir. Her platelet count was still too low this week to start another round of chemo, so we wait. They want her to get one more week of the Gancylcovir, so I am thinking it will be postponed another week. I am very happy she is home. She has lost some weight, so we are trying to get her to eat as much as possible. The Megace seems to be working. Her appetite is up a little. All of her clothes are falling off of her, so we want to try to get her weight up again before her next round of chemo. We got a card from Lauren yesterday, Thank-you! Madison loved the picture as well!!! We are just taking it day by day, never knowing what will happen. That's about all we can do right now. Madison and Taylor made some tye died shirts in the play room of the Ronald the other day. That was alot of fun! They are having activities each day for the kids in there, so that's where we spend alot of time at. It has been very hot all week, so we haven't gotten out a whole lot. Granny Helen is suppose to try and come up at the end of the month, and we are all looking forward to seeing her. Madison continues to be in good spirits, so that makes us feel good as well. Well, that's about it, thankfully. Thanks for checking in, God Bless!!

Monday, July 11, 2005 4:05 PM CDT

Praise The Lord!!!! Madison came home yesterday! We are SSSOOO happy, as you can tell. She has to go to clinic Monday-Friday for IV Gancyclovir, but she can come home after each day. She is very happy to be out of the hospital as well. She won't be having surgery on Wednesday. They are going to monitor her counts this week, and she may start a low dose of chemo on Monday next week. Her platelets are still remaining low, oddly her WBC was a little over 14 today. Yesterday her WBC count was 4.2, and in one day they jumped to 14. Their not quite sure why, praying it is not a bad thing. They started her on Megesse(sp?). It is a oral med to boost her appetite. She has lost some weight. Today she was 13.2 Kilos. When we went for surgery she was 15.6 kilos, so that's a good bit off. Praying this will make her eat more. She is eating, but not as well as she was pre-surgery. I also asked Dr. Kushner about harvesting more stem cells, since we only have one bag remaining, and he told me IF it would happen it would have to be once she is off Gancyclovir. He said she may not be able to at all. This is very scary and devestating news to me. If they have to use her 1 remaining bag for a rescue, there will be none left for future emergencies. I will continue to pray they will be able to harvest more. After she has gotten so much treatment and a transplant, he said it is difficult to have a successful harvest. The future plan of treatment is so scary, because we don't quite know how Madison's body will recover. The CMV will always be in her body, and each time there is treatment that suppresses her immune system, there COULD be problems. I will keep praying and hoping that she will remain fighting this cancer. That's all I can do, and looking back on her battle, she has continuously amazed me, so I hold onto that as well. Please continue to pray for her. I'm not quite sure how long we will remain here in New York. I don't think we will be leaving anytime soon. We are just taking one day at a time, and dealing w/ what that day brings. Thanks for checking in, and for all those that pray for Madi and our family. God Bless!!

Friday, July 8, 2005 11:27 AM CDT

Madison is not coming home today. Now the day to shoot for is Sunday. I am hopeful this will be the day, but not for certain. Tomorrow makes 3 weeks stright, and all but 3 days out of a month today, that she has been in the hospital. It has been a long and difficult stay, very stressful. Tomorrow she will start to get the Gancyclovir once a day. Then once again on Sunday, then, as we have been told many times before, they are planning on letting her come home Sunday. She will have to go into the clinic Monday-Friday for her daily dose of Gancyclovir, for who knows how long. Now that she has CMV, she will always have it. They are trying to get rid of it from her blood stream now, but there is a chance each time her immune system is suppressed(chemo/radiation,etc.) that she may expierence problems from it. She will be on this medicine for awhile, maybe indefinately. Dr. Kushner came in to tell us they are going to get her stem cells that she has frozen back home. Right now, today, the plan is to give Madison a low dose of chemo, let her counts recover, give her a higher dose(her regular dose) chemo, give her a stem cell boost, then have her surgery, then on to antibodies. Obviously that is not set in stone, since the CMV has changed the plan already. Dr. Kushner has told us this is a "unique" situation. The last time he has treated a Neuroblastoma patient who was CMV, was 6 years ago, but post transplant. I am terrified at what will happen. Her counts are all too low to attempt the surgery right now, but to me I am worried about doing chemo as well. But it has been 3 weeks, so we have to do chemo or the cancer may come back. You just never know what is going to happen in the cancer world. Just when you think you know the plan, something always changes. Please continue to pray for Madison. She is so ready to get out of the hospital. This is one of her longest stays in a long time. Thanks for checking in, God Bless!

Wednesday, July 6, 2005 12:18 AM CDT

Madison is still in the hospital. She was retested and yesterday we found out she still has 1 remaining cell that is CMV+. I pray she will get to come home on Friday. That is when they will retest her. We're not quite sure what is going to happen w/ her treatment next. Dr. Kushner came in yesterday and told Aaron that he needs to speak w/ Dr. LaQuaglia to see if she will have surgery on the 13th, or if it will be postponed. Her platelet count has remained low, due to the Gancyclovir they are using to treat the CMV. It's so arrgrevating that she has gotten this CMV, because it is pushing treatments back, so we are not sure what the plan is going to be. It seems like we are getting further away from the antibodies the longer we stay. Please pray this will all be resolved soon, so she can have her surgery to remove the rest of this cancer from her body, and so she can get the antibodies. She asks to go back to the Ronald daily. I pray this will all be resolved soon. Thanks for checking in. God Bless!

Saturday, July 2, 2005 11:45 AM CDT

Madison is still in the hospital. They retested her for CMV on Thursday, and there are still 2 cells showing CMV+. They will retest her on Monday, and hopefully there will be no cells remaining positive. She has to be back in the hospital on the 13th of July for her 2nd surgery, so I am praying she will get to come home on Tuesday so she can have some time away before returning for another stay. I'm really bummed out. I really was looking forward to having her home, and trying to have a nice family outting, to enjoy the 4th together. But she will still be in the hospital. Hope everyone else enjoys their Holiday. They took her off of the TPN, because she is eating on her own again. No fevers, diarrhea, or vommiting. She is getting bored, and is ready to come back to RMH. I am ready TOO!! Today makes 2 weeks she has been in. She only had 3 days home after her 1st surgery. I am also praying she will have a shorter stay after this next surgery. Sorry I haven't updated lately, I'll try and get to it more often. I was so happy to get to meet 2 parents/children that have answered alot of questions for the last 2 years, and have taught me alot through their expierences. Jennifer, Caroyln's mom and Ellen, Sean's mom. Both of the kids have been through alot, and they looked wonderful. I was so happy to finally meet them. Carolyn just finished up w/ the antibody treatments. Thank you both for all the support and advice. It really has been a blessing. Well, that's about it. Aaron and I have been switching out at the hospital. We are sharing a room, so it's hard to get a good night sleep. We have been trying to keep Taylor busy also. There have been alot of activities at RMH this week, so he's been pretty busy. I wish Madison was here to enjoy them as well. Thanks for checking in. God Bless!!

Monday, June 27, 2005 11:27 AM CDT

Madison has not had a fever since 2:00am yesterday. THANK GOD!! She is eating more and more each day. She is still on TPN, only at night. She hasn't thrown up at all today, and no diarrhea yet either. She only had 1 episode of diarrhea yesterday. They are retesting her blood for CMV again. They did this yesterday, and we should get results back today. CMV is a virus sort of like measles. Once you get it, you will always have it. It goes away, but lays dormaint in your body. Most people don't know they have it because they don't have any side effects. Madison, being immunosuppressed, has had difficulty w/ it, but thank GOD it was only in her blood stream, and hasn't spread to any organs. The medicine she is on Gancylovir, can be toxic to the kidneys. So far Madison is doing good w/ it. Yesterday they gave her CMV immunoglobulin. This will help her body make the antibodies to fight off CMV remaining. Healthy people already have these antibodies that protect themselves from this, that is why they don't really have side effects. It is a virus that can be found in blood products if the donor is CMV positive. There are kids/people w/ cancer who are CMV when or during treatment and they don't respond this way. Madison has always been CMV negative, and they think w/ her counts and immune system being down, this is why she responded the way she has. She has been getting Acyclovir since she has been diagnosed, and this may also be why she has a low Number (12). They look at this number to find the extent of the virus. The Gancylovir, she will have to take for awhile to make sure it is taken care of. One question we haven't gotten answered yet is if this will re-occur each time her immune system is suppressed after chemo. Infectious Disese are running some tests, and will hopefully be able to answer that for us. They are also doing tests to find out which antibiotics (hopefully Vacomyicin) she can be taken off of. We should find out a little more today and tommorow. I am praying her fever stays gone, and this has been the reason for it. The doctor's weren't for certain it was, so they are doing more tests to make certain. Thanks for all the prayers, it has been a tough few days/weeks, but I am starting to believe she is over the hump, and hopefully might get to come home soon. Thanks for checking in, God Bless!!

Saturday, June 25, 2005 8:37 PM CDT

Madison is CMV positive. Infectious Disease tested her blood and found this out. It is a viral infection. As of now it is only in her blood stream, but it can spread to her organs. We think it was from a blood transfusion she received. They normally screen the blood to make sure it is CMV negative, but I'm not sure if they do that here. They are checking into it. She started on a medication called ganocylivir(SP?) today. It slows the spread, hopefully it will stop it from getting to her organs. It can develope into pneumonia, which would be awful for Madison. The treatment is for a couple of weeks. I am hoping this is what has been causing the fevers. The Medicine itself can be toxic to the kidneys. Which is also a nightmare for me, because Madison's R kidney only is functioning at 10% and L kidney at 90%. They will monitor her kidney function and we will start doing creatinine clearance tests starting tomorrow. This is where they collect her urine to make sure her out put is efficient, and will tell them if her kidneys are functioning correctly. I asked about getting the Vancomyicin switched to a less harsher antibiotic, but haven't heard back from them yet. I don't want to stop the antibiotics in case she does develope pneumonia, but the Vanco. is harsh on the kidneys as well. This is a nightmare, but I am glad they FINALLY found something. I PRAY and PLEAD w/ the LORD to help her and her poor little body through this. Please pray for her. This is going to be a rough few weeks for her. All she wants to do is go home, poor baby. Right after the infusion of the med. she started itching and had red spots show up. They have given her Benedryl, and she is now resting. I have to get back to her, but I wanted to update everyone and ask for prayers. Thanks for checking in!

Friday, June 24, 2005 10:23 AM CDT

Madison is still not doing well. She continues w/ fever, diarrhea and vomitting. Her bottom area is now itching and burning. I think she has a yeast infection from all the antibiotics. She won't even go in her diaper anymore. She wakes up in the middle of the night to go to the toilet, because of the diarrhea. She has asked to go home a few times. My heart is breaking because I know she is so uncomfortable, and they still don't know what is going on. All of her cultures are still negative. The CT they did yesterday showed nothing abnormal. I keep praying the doctors will find out what is wrong so she can get whatever she needs to get over this. As each day passes I get more and moe concerned and scared. I don't understand why they can't find out what is causing the fevers. Please continue to pray for Madison and the doctors, that they will be able to figure out all of this. Thanks for checking in, God Bless

Wednesday, June 22, 2005 8:12 PM CDT

Madison is still having diarrhea issues. She had 4 episodes so far today. She started throwing up again, 2 of those. She is now on 3 antobiotics, Flagyl, imodium, and octreotide. The last 3 are mainly for diarrhea and her cramping from it. There was a little substance in the diarrhea today. Still runny, but not as watery. I am praying that is a good sign that she may start to improve. She also continues w/ fever. She has had 2 so far. Today marks 2 weeks post surgery, and I'm praying her poor little body will start to heal. She also started TPN today to try and get some calories in. She ate a little today. I got her to eat 1 1/2 cheese sticks. I tried to get her to eat some oatmeal, but maybe for breakfast. Anything to try and stop her diarrhea. Thanks for all the prayers, please continue them. She has asked about going home a few times. She usually loves to go/ be in the hospital, but this has been such a long hard stay. We're glad to hear the news of the baby. Hopefully it won't be too long before we get to meet him. Thanks for all the help, for now and in the past. I don't know what we would do without all the help we have received from everyone. Keep Madi in your prayers, everyone is always in our thoughts! God Bless!!

Monday, June 20, 2005 10:19 PM CDT

Madison is still running fever. She is now on 3 antibiotics. She is eating a little, but still not much. Nothing has grown in any cultures yet. She is still having alot of diarhhea, but the vomitting has stopped. I am praying she will start to recover. She has been through so much. Please continue praying fo her. God Bless!

Sunday, June 19, 2005 4:08 PM CDT

Happy Father's Day!!!!!!!!

Madison was admitted to the hospital last night due to fever-100.8 about 10:30 pm. She is receiving fluids as her potassium and sodium were low. This is no surprise since she has been vomitting and having diarrhea for awhile now. She didn't eat anything at all yesterday. But she ate 1/2 of a small kids pizza today. She is more playful today as well. Aaron and Taylor spent most of the day at the RMH, what a great father's day, but were together that's all that matters. She didn't run another fever for the rest of the night and most of the day, until about an hour ago. So, I'm sure we will be here for a few days. They started drawing cultures as of last night, and nothing has grown so far. I know this is where she needs to be, and I'd rather her not get dehydrated. Please pray for her and her quick recovery. I hope the fever is just a side effect of the chemo. Thanks for checking in, God Bless!!

Friday, June 17, 2005 2:45 PM CDT

Madison was on the Today Show yesterday, as well as Taylor briefly. They had a Prom for the kids at the hospital, the tuesday before Madison's surgery, it was so wonderful. They let the kids pick out dresses that were all beautiful. She even got her makeup done and got given some jewlery as well. It was wonderful to see the kids laugh and have a good time. Some of them were recieving their chemo while they were dancing. It was really great. Madison is still having some pain issues in her stomach. She's also having diarrhea problems again. Today was her last day of chemo for this round. They gave her some Lomatil for the diarrhea and also told us the chemo causes cramping, so the med. is good for that as well. She's just sleeping alot and very nauseous still. I hate seeing her like this, and not being able to do anything for her. We have an appointment w/ surgery on Tuesday for a check-up. I find her stomach on the left side is still swollen. It's not normal looking. I hate knowing as soon as she gets over this surgery, she has to go through it all again. I pray God will watch over her and give her a speedy recovery. She is still not eating alot at all. She is drinking, but I can tell she's lost weight already. She doesn't have alot of weight to begin with, so losing a little looks significant on her body. Please continue to pray for her, and her recovery. Thanks for checking in, God Bless!!

Wednesday, June 15, 2005 4:30 PM CDT

Madison got to go home today. We are back at The Ronald McDonald House. She is still having a little pain, but it is controlled w/ tylenol with codeine. She is still sleeping alot. We will go into the clinic tomorrow as well as Friday to finish this round of chemo. She is getting IV Irrinotecan & oral Temozolomide. Irrinotecan, she has had one round of, but Temozolomide is new. She gets very nauseous from this, so they gave her Kytril, a nausea medicine, every 12 hours, now only in clinic. But she is also receiving Vistaril, another nausea med as well. She did better w/ the Temozolimide today. The first 2 days she threw up right after she swallowed it. She ate a little food today, which was a blessing. Her poor little body has been through so much this week. They said to let her determine about when she's wanting to eat. She was weighed today and is 14.3 kilos. When we went in last Wednesday for surgery she was 14.8 kilos. So we are trying PediaSure and whatever we can get into her to raise her weight again. She is continuing to get stronger, not yet back to herself completely. On the way home we passed by McDonalds and she wanted french fries and chicken nuggets. Of course we stopped, and went to RMH for her to eat. She had 1 1/2 nuggets and a few fries. Not long after her stomach was hurting. She is now resting after receiving tylenol. We were told her intestines from the last x-ray show, they are not completely back in place. More walking will help gravity pull it back in time. So, she is walking, and not really complaining. She sits up for awhile and plays as well. We got a card from our friends/nurses/childlife at Tulane today. It's wonderful to see so much support. Thanks, Madison really enjoyed the card and was excited to read it. She also enjoyed the stickers. One day we will hopefully get back home. We miss everyone. The kids really miss Bruno, our dog, as well. We know this is where we need to be, so we are all just taking things day by day, and trying to make the best out of our cituation. Thanks for checking in, and God bless!!

Tuesday, June 14, 2005 11:37 PM CDT

Well, we are still in the hospital. Madison is still having some pain issues, so they are giving moraphine as needed. She only had it once today, but she is back on a liquid diet. She's not eating anything. Don't quite know when she'll be leaving, but at least she's getting the care she needs. She ran another fever about 10:00, so I'm not sure what the doctors will say. I'll update asap, God Bless!

Tuesday, June 14, 2005 10:46 AM CDT

Madison started chemo yesterday. She is continuing to get stronger each day. She is eating a little more each day as well. She will be coming home today. We will go into the clinic each day until Friday to get chemo and fluids. She started Irrinotecan and another chemo that is given orally in the form of a pill. Aaron is there w/ her now. I am at the Ronald getting the room all clean, and preparing for her homecoming. She has done so amazing. She is in good spirits. She still complains of a little pain, but tylenol w/ codeine is enough to comfort her. No more fevers, so the port stays, thank God. The plan is for her next surgery to be in 3-4 weeks. They wanted to start chemo right away, due to the active Neuroblastoma they removed, but also knowing there is more to remove. She has been through so much, and her strength truly amazes me. The chemo she started has made her vommit, so I am praying it will not be too hard on her. I also pray she will continue to eat and drink, and for it to continue to increase each day. I'm not sure what her weight is, but she didn't eat at all the first 3 days, so I'm sure she has lost a little. We were pumping PediaSure in her to try and get a few calories in. We received the package of clothes from mom, Helen, yesterday. Thank-you, they are all great and we appreciate it. I'll try and update again soon. Thanks for checking in!! God Bless!

Sunday, June 12, 2005 6:25 PM CDT

Madison is doing well. She was moved to Memorial Sloan Kettering yesterday. She is currently in the POU (Pediatric Observation Unit). She has been up and walking around. She has had some issues w/ diarrhea, but hasn't had any since this morning. She is continuing a low grade fever, so cultures were ordered yesterday. Nothing has come back yet. We talked w/ the surgeons and they said if it continues she may have her Port removed. We shall wait and see. She is suppose to be moved to the regular Peds floor tomorrow. She was much more alert and playful today. It was wonderful to see her beautiful smile today after all she has been through. Thanks for all the prayers and support. She is going to start chemo in the next few days, as soon as surgery gives the ok. After that she will recover then have another surgery, hopefully to completely remove all of this cancer from her body. She will have to recover from that, then do another round of chemo, then on to antibodies. Things just never go the way they are planned, but we have definately learned to take it one day at a time and be thankful for each one. Aaron and Taylor went to a race track today to watch a car race. Taylor was really excited. They went w/ The Ronald McDonald House. I'm glad Taylor gets to get out and get his mind off of a very stressful week. Please continue to pray for Madi. I am praying she won't have her port removed. She has had it in since she relapsed in Aug. 04, and has had no infections. She has been through enough. It's bad enough she will have to start chemo already. But I would definately rather be safe than sorry, she doesn't need an infection right now. I'll try and update again. There is a computer in the playroom so I will try and give more info as well. Thanks for checking in, and God Bless!

Thursday, June 9, 2005 4:46 PM CDT

Madison is doing well. Her surgery went good. There are still areas of tumor remaining in her right abdomen area, so she will be having surgery again. Not quite sure when yet. Dr. LaQuaglia cleared everything from her chest area, left abdomen, and everything he could along her spine. So far she is recovering well! They removed the breathing tube and G tube today. She is still out of it for the most part, but her pain is well under control. I came home to rest and shower, and Aaron is there with her now. I'll try and update as much as I can. Thanks for all the prayers and support. Dr. LaQuaglia said if she continues to do well, she should be out of ICU on saturday or sunday. Thanks for checking in, God Bless!

Thursday, June 9, 2005 4:46 PM CDT

Sunday, June 5, 2005 7:25 PM CDT

We're all doing good. Yesterday they had a street fair on First Avenue that we went and walked around and enjoyed. We then went to Central Park for a recreational day for the kids. They had a rock climbing wall that Taylor enjoyed, and an obsticle course Madison enjoyed. We let the kids play at the park for a little while, then returned to The Ronald. We all had a long day, but enjoyed the outting. We stayed around the house today. They showed Madagascard, and the kids enjoyed it. Madison and Aaron went for a walk, and Aaron went by a Catholic church to light a candle and pray for Madison's upcoming surgery. Tomorrow we will be meeting w/ Dr. LaQuaglia again, to go over surgery. The time is near, and I am very nervous. But I also know this is the best place to have her surgery and have alot of confidence in her surgeon. Well, that's about it. Please continue to pray for Madison this week. Thanks for checking in, and God Bless!

Friday, June 3, 2005 1:43 PM CDT

Thank-You to everyone who helped w/ the fundraiser last night. It is so overwhelming and incredibly wonderful all the people that made donations and gave so much of their time and devotion to helping our family. May God BLess you all in many ways. There are no words to describe our graditute. Most of you all are strangers to us, but you have found it in your hearts to open your lives to us, and we are so blessed to have you in our lives. THANK - YOU ALL!!! We also received a package of clothes from Granny Helen. Thanks MOM!! We brought clothes, but we didn't anticipate our stay to be this long. Washing them everyday, they don't last as long. Thank-you to Carol and Tim as well. They have been there for us in so many ways, and we will never begin to thank them enough! We also received a few packages of goodies for the kids from Angel Jodi! Thank-you, as well. God has sent so many wonderful people into our lives, and we praise him and thank him daily for all of our blessings. God is watching over our family, and we see the power of prayers received from others daily! Thank-you all for being there and helping our family in our darkest hour, making us see all the blessings, and showing Gods love to us! Thank-you for checking in on us, and May God Bless You ALL!!! A special thank you to Barbara Matherne for all that you did to make this fundraiser possible, and getting the word out to so many people. Mandy, we thank you as well for all that you have done also. I wish I could name everyone who did this for us, but I don't know everyone. I just know we are eternally greatful to everyone who has been there for our family! THANKS, again!!!!

Wednesday, June 1, 2005 3:39 PM CDT

After 1 year and 9 months I have finally learned how to change the photos on Madison's website! Rich, the computer man at the Ronald showed me! Thank-you!! Now everyone will be able to read and see pictures of all events happening.
We're all doing good. Madison had an appointment w/ Dr. Wolden today for consultation. She needed a few more scans. I contacted Dr. Rozans and she is going to get them sent. Dr. Wolden was very nice and informative. She explained the proceedure to us in great detail. The rest of the week we have no appointments, so we will be wandering around the city. Now I can post pictures of our daily adventures. I can't believe how easy it was to do. I can say that now that I have been shown. I am so greatful! Thanks for checking in, God Bless!!

Monday, May 30, 2005 4:59 PM CDT

I hope everyone had a good Memorial Day. We did. We started out going to Good Morning America studios where Aaron recieved the bike he won. We weren't on the show, but they did show Aaron right at the end, getting his bike, with all the others outside. We had to get up at 4:00 am, but it was well worth it. The kids did a good job sitting and being quiet for so long. The huge Toys R Us store was right across the street, so they were eager to get out and go explore in there. Madison got to go the last time we were here, but this was Taylor's first time. They both enjoyed it, alot! We then went to the BBQ that they had here @ the Ronald. It was very nice, and we spoke with a few more parents with children that were here for treatment for Neuroblastoma. The weather outside is looking like the sky is about to fall, so we are spending the rest of the afternoon in.
Lauren, our good friend and fellow nurse at Children's in N.O. had her graduation party on Saturday. She was so thoughtful and generous that instead of gifts, she requested donations for Madison to help w/ our expenses to stay here in New York. She is truly a blessing. Thank-you SSOOO much, Lauren, and to all the guests that made donations to Madison. That was such an awesome thing for you to do for us!!! God is truly watching over our family, and has brought so many blessings and good people into our lives.
Tommorow we have to go to the hospital for a consultation w/ Dr. Wolden, the radiologist that will be doing the radiation for Madison's surgery. So far it is still scheduled for June 8th. She also has to get a CBC, and that will be it for the week. We have to meet w/ Dr. LaQuaglia next Monday again, then surgey on Wednesday. We are trying to get out and enjoy as much time together as possible. Well, that's about it for now, thanks for checking in on us. God Bless!!

Sunday, May 29, 2005 1:54 PM CDT

The weather has improved, and it has been very nice and sunny out. We have enjoyed a few more walks into Central Park, but the weather was much better. Madison is doing great. She is eating well, and full of energy. Taylor has been busy playing w/ all his new friends he has met here at RMH. Our friend, Dylan, has not been doing to well, lately. Please pray for him and his mother. She is here alone, so it is really hard on her. We are fixing to go up to watch a movie, but I wanted everyone to know we are all doing well. I'll try and update more later, the computer romm is now closing. Thanks for checking in and God Bless!

Thursday, May 26, 2005 2:43 PM CDT

It's been a very cold and wet week here in New York. We went in for Madison's CBC this morning, and she is all set for surgery. Her platelets were 156,000. WBC 4.8 HGB was good also. So she is healthy and all her counts have recovered for surgery. Thank GOD!! Her surgery is now scheduled for June 8th. It was the 6th, but the radiologist that will be doing the intersurgery radiation was not available then, so hopefully June 8th will be the final and definate day. Thank-you to Mrs. Barbara Matherne and Holy Rosary Music Worship Group. They, as well as Holy Rosary Catholic Church and the community have helped our family tremendously, and we are truly greatful for all that they do!!! THANK-YOU ALL!!!!!!! May god bless you! We had a good day after clinic. We didn't go to the Children's Museum the other day, do to all the rain we have been getting, but we ventured out today. It was raining a little, but we had umbrella's and a plastic stroller cover for the kids. It was quite a walk, but it was nice to get out for awhile. The museum was really fun, and the kids enjoyed it alot. On one of the floors was Dora the Explorer floor. Madison REALLY enjoyed that. She cried when it was time to go, but we promised her we would go back another day. The price for admission wasn't bad at all. We haven't gone or found the Nintendo World, but I'm sure we will eventually. We are just hanging around The Ronald McDonald House, and enjoying all the events and guests that come by for the kids. They really do alot here for all the families. Tuesday they had an African group come by and play and sing some African music. Madison was jumping around and dancing. She really likes all the different music that we have been fortunate to hear. We are truly thankful and blessed to get to stay here. It's hard being away from home, but they try their best to make you feel at home here. Well, that's about it. I'll try and post again in a few days. Thanks for checking in on us. God Bless!!!

Monday, May 23, 2005 11:56 AM CDT

We had a great weekend here at The Ronald McDonald House. Friday evening there was a local high school Arts Dept. that came by and entertained everyone w/ dances from different cultures. After, they showed the kids some dance moves. They really enjoyed themselves. Last night there was a Sunday matinee, which to our surprise was the NEW Star Wars III movie. Taylor and Aaron really enjoyed that. We are off today to find the museum that we received free tickets to. Tomorrow we will be going into the clinic, but only for a finger stick for CBC. Madison is doing very well. She is eating good, and loving our stay here at the Ronald. Taylor is doing well also. He is meeting lots of new friends. We are all enjoying our time together as a family, and trying to make the most out of our time out of the hospital. They also have a new Nintendo World that just opened up somewhere in town, so we are going to try to find that as well. Well, thankfully, that's about it. Thanks for checking in on us, and don't forget to sign the guest book so we know who came to visit! God Bless!!

Friday, May 20, 2005 10:01 AM CDT

Yesterday was very eventful. We met Dr.LaQuaglia, and spoke to him about Madison's upcoming surgery. She was scheduled for surgery on Monday, but after getting her blood counts back, they have decided to postpone it until June 6th. Her platelet count was only 45,000. They want it to be at least 75,000, but would like it to be 100,000. We had a scheduled return flight through Miracle Flights For Kids on June the 12th, so now I have to see if the will credit us for whenever our return flight home will be. Not quite sure how all that works. We have decided to stay here in New York for awhile. Madison's surgery is alot more extensive than we were thinking. She has alot of dead tumor, calcified tumor, lymph nodes, and other areas that they want to get out. They will make an incision from the left side of her stomach, extending to the middle part of the left side of her back. Majority of it all is on the left side, but there is some areas on her right side as well that he needs to take out. He is hoping to get it all out w/ this surgery, but said he may have to do another surgery if he can't. There is also a spot on her spine, that we didn't know about. It is not active tumor, but it was branched off from the area in her abdomen. It is very small. Dr. LaQuaglia has seen this before and said that sometimes such a small area can go away w/ chemo or radiation. If it doesn't go away we have to meet w/ a different surgeon at a later date to discuss surgery there as well. Dr. LaQuaglia also discussed w/ us about doing interoperative radiation while she is in for this surgery. They have a operating room that is made out of lead, that they can pinpoint radiation to the areas they feel needs radiation, while in surgery. This was mind blowing to us. The side effects are the same as the potiential effects from previous radiation, but there is less tissue damage, because they don't have to go through other areas of undamaged tissue because it will go straight to the exposed areas, that will be opened up for her surgery. We have consented for this all. We have to go in on Tuesday and Thurday for CBC, to ensure her platelets are recovering. We will be meeting w/ the Radiation Oncologist on the 1st to further discuss the radiation, and meet w/ Dr. LaQuaglia again on the 2nd to go over surgery and testing once again. This is a life threatning surgery, as we were told repeatedly from Dr. L. Please pray that Madison comes through it all, and recovers quickly. Dr. LaQuaglia was so informative. He went over her CT slice by slice to show us each area he will be going into, and discussed all possible risks involved. He said some kids have diarrhea issues, but he doesn't feel Madison will because of the areas he will go into. The main side effect from the surgery that she may develope is skoliosis(?spelling). The areas that will be involved will extend from her 9th rib, down into her chest and abdomen. It is very extensive. He told us alot, and the things that COULD go wrong or happen. They were pretty bad, but we have alot of confidence in our doctor's here.
We also met w/ Dr. Kushner after and he answered alot of questions for us as well. He wants to start Madison's next round of chemo about a week after surgery, if all goes well. After that we will have all tests repeated, and we will go on to 3f8 antibodies. I was scared w/ all the area Dr. L. had showed us, that we would have to postpone the antibodies for more chemo, but Dr. Kushner said everything was still going as planned. We have decided to stay here until after she begins antibodies. We don't want to be flying commercial airlines/crowded airports w/ all this happening. She will be at risk for infection, so we all feel we should stay for her health. It will be awhile, not quite sure how long. We are just trying to do what is best for her.
After our very long day at clinic, we came back to The RMH and there was a BBQ on the 3rd floor terrace. They had BBQ, cotton candy, a few little games, all set up for the kids/families staying here. It is so awesome, all the activities and outings that they do for all the families staying here. Some families have been here for years! We met a Child life worker(can't remember her name,sorry) in the play room who gave us tickets to a museum in Central Park. That was so nice of her. She is originally from Nashville, Tenn., a fellow southerner, and we talked about the city and things to go and check out. Everyone is so friendly and helpful at the hospital. We met up w/ Melissa and Dylan down stairs for the BBQ, and Taylor and Dylan hit it off so good. They went back up to Dylan's room and played together until 12:00 am. Melissa, Dyalan's mom was so happy to see Dylan and Taylor hit it off so well. She said he really hasn't socialized w/ any other kids since they have been here. At the RMH or at the hospital. And they have been here since January, and will be here for quite some time. Taylor really enjoyed the company as well. They both like the same things. Melissa took some pictures, and she is going to give me a few pointers on addind things to Madison's webpage, so I will try and download new pictures from here in New York.
We are still waiting to hear from Diane, the social worker who arranges our stay here at the Ronald, about extending our stay. Hopefully there are no problems, we pray. I also got to meet Richie, he's the one from Houma. His mom is up here alone so I spent sometime speaking w/ her and I am trying to give her all the resources I have come across to help w/ flying and such. I am glad to help anyone with things like this, because we are all in the same situations. I'm glad I came be of help, like so many have come to our rescue through this very trying time. Well, that's pretty much been our eventful last few days. We are going to go for a walk in Central Park again today. The kids really enjoy it. Thank-you to everyone who continues to help us and follow our family through all of this. It's a long hard road, but all the people/family/friends that have helped us through the way, sure help us through it all. Thanks for checking in and I'll try to keep everyone updated! God Bless!!

Wednesday, May 18, 2005 11:55 AM CDT

We got to meet Angel Jodi yesterday for the first time and boy was it great! We were so happy to finally meet her after all this time! I also got to go up and visit w/ Dylan and Melissa. That was nice to talk to someone who has already been through surgery, and she showed me pictures of him during his stay afterwards. I know it is going to be hard to see Madison w/ all those tubes and lines running out of her, but Melissa said it is only for a few days, so we're thankful for that. Tomorrow we will be going to the clinic and meet w/ Dr. Kushner, as well as Dr. LaQuaglia. I'm sure we'll know alot more then, as to what to expect and how long the surgery will be. I am very nervous, but I truly feel in my heart this is the best place to be. We have met a few more families, including one from Houma! That blew us away!! That's only 30 minutes from where we're from. I think they were shocked as well. Last night we enjoyed a dinner made up of all different International Foods. It was very good. People staying here are from all over the world, so it was nice to taste food from different cultures. The kids enjoyed it as well. I'll try and update again tomorrow with more info on Madison's surgery. Thanks for checking in on us, God Bless!!

Monday, May 16, 2005 11:21 AM CDT

We made it to New York City around noon yesterday. I've been unpacking and getting everything/everyone settled in. Yesterday we went for a walk in Central Park. Taylor really enjoyed the park, and Madison loves it! We are getting ready to go out and explore the city a little more today. We don't have to go in for pre-surgery testing until Thursday, so we are making the most of our time out of the hospital. Madison is feeling good, and so happy to be back in New York. Taylor was in amazement as we went over the Brooklyn(?) bridge to get to Manhattan. New Orleans is big to him, but New York City is WAY bigger. He was shocked to see the very tall buildings. He has been excited since he got up on Sunday. They didn't go to sleep until 12:00 last night. We all slept in this morning, though. We are all re-energized and rested up now. It felt so good to get a good noght's sleep. Thank-you to everyone who has helped make this trip possible. We will never be able to fully show our appreciation for everything that our community, family, friends,churches and organizations have done for us, but we are truly greatful to all. We pray God will bless you all in many ways, because you all truly have been a God send. We are suppose to be meeting with Angel Jodi, maybe tommorow. Her and her family have been wonderful to us as well. She is Madison's chemo angel. She has been sending packages, cards, gifts to Madison, as well as Taylor, for quite some time now, and we are so excited to finally get to meet her. She lives in Philadelphia, and she is going to take a train so we can all meet for the first time. She has been a God send to our family as well. I am going to put the address to The Ronald McDonald House on the site, and it will stay there as long as we are here. That way anyone who needs it can find it. Please make sure and include our room number, as well as Madison Musyl on it so it will go to the right place. There haven't been too many new entries in the guestbook, but I can see the counter going up, so we know we have people checking in on us. Thank-you all for following us through all of this, and praying for our family. Well, I gotta go make some lunch for the kids. They are enjoying playing in the playroom, and meeting new friends. Thanks for checking in, may God bless you!

Friday, May 13, 2005 7:49 PM CDT

Madison had to go in for platelets today. She enjoyed the trip so much she didn't want to leave. She threw a fit, but I know she was tired on top of it. She gets so spoiled at Tulane, we are truly blessed. We are making all of our final arrangements for the trip. I am praying all goes well. Taylor and Madison are getting excited. I wish it was just a family getaway, and not a medical necessity. We will make the best out of the situation, though. Somehow we always do. Thank God! She doesn't have to take the antibiotics that I was administering to her anymore, so she is enjoying a bubble bath. She loves it when she gets her tubies out, she plays in the bathtub forever. She just calls when its getting cold for me to add more water. It's so crazy the things you learn to appreciate and notice when stuff like this happens. She truly enjoys each day, and lives to the FULLEST. That is one of the things we have been so fortunate to have in dealing with all this. She has a wonderful attitude towards it all. She is so full of spirit. Unfortunately, she still has to get her Neupogen shots, but we need those WBC up for surgery, so we shall continue. Well, gotta get back to packing. Just wanted everyone to know she is doing great, and feeling fantastic! Thanks for checking in on us, please keep us in your prayers! God Bless!!

Tuesday, May 10, 2005 11:46 AM CDT

Madison is on her way home right now!!!! We have everything arranged for New York, THANK GOD!!! It was quite the adventure to get flight assistance in such a short period of time, but thankfully we had "Miracle Flights For Kids" come through for us, again. They are truly miracle workers. Rio, the lovely lady who worked extra hard, and stayed at work longer to ensure our flight, thank-you and may God bless you. These are volunteers, and we are so greatful to them and their wonderful organization. Trust in the Lord!! Madison is coming home and boy did I miss her! Thank-you to everyone who continues to pray for her, we can feel the power of prayer.
Taylor is excited about going to New York. I truly hope all goes well. This will be his last week at school, and he's a little sad. He has had such a wonderful teacher, Mrs. Bourg, that has really been there for him, and he is going to miss her. She is going to be moving, but we will try and stay in touch. She has been a blessing in our lives, and will never forget her. Madison's counts are continueing to rise, and her spirit is soaring again! It's wonderful to hear her on the phone. Aaron said she never stopped yesterday. She was riding her bike all over in the halls of the hospital. They disconnected her for about a 1/2 an hour from her fluids and boy was she happy!! I am glad she is coming home and so thankful for her quick recovery! Well, I've got LOTS of packing and arranging to do for our trip! Thanks for checking in on us! God Bless!!!

Sunday, May 8, 2005 10:48 PM CDT

Happy Mother's Day, to all you mom's out there!!
Madison seems to be improving. She is still having diarrhea issues, but not as frequently. She is getting her appetite back. She has an ANC of 150 today, which means her body is starting to recover from the chemo, thank GOD!! She talked to me on the phone, which made my day, and she seems to be getting back to her wonderful, playful, cheerful self. Hopefully another day or 2 and she will get to come home. She had to start the Sandostatin shots for the diarrhea. It seems to be improving, so we are praying she won't have to get too many more. Today was hard w/ Madison not being here. I always start the day thanking the Lord for the many blessings in my life. Health is a gift, and we pray the Lord will shower this over Madison. But in dealing w/ everything these past few years, I have come to realize all the blessings we have, and how much for granted we take those things. Everyday I take the time the thank God for those things. Madison and her journey has made my life so full of purpose, and the best gift I could ever receive would be being the mother to my beautiful, special children! I hope everyone had a blessed day w/ their families this Mother's Day! Tomorrow I have to get in more phone calls to verify all plans for our trip. I'm sure we will be there for awhile this time, so I wanted everyone to know there is a donation account for Madison at: Bank One as well as State Bank. It's under her name, Madison Musyl. I know we have been blessed w/ many donations, and we set this up for the funds we have received, as well as for any in the future. Thank-you all for checking in, and May God Bless You!!

Saturday, May 7, 2005 4:29 PM CDT

Madison continues to battle the diarrhea. She isn't eating all that well, still. I just spoke w/ the nurse and she said she hasn't had any fever so far today, thank GOD! They are going to try giving the imodium every 4 hours to see if this works. If she still is having problems, they will start her on a new medicine called Sandostatin. This is a new drug for Madison. It is suppose to help w/ diarrhea issues steming from chemotherapy. I pray the imodium will work, however, because this medication has to be given as a shot. Madison has just started her Neupogen shots, so this is a double whammy of shots. My poor baby. She has to endure so much. She is more awake, and talkative today. This is the first day she would talk to me on the phone. I pray she is on the road to recovery. I just hate knowing she has to go through this all again in a few weeks, for another dose of chemo,UGH!! I am still getting things together for New York. I know we will be there for quite some time. I pray her surgery goes well, and her recovery will be quick. That's about it, thanks for checking in on us! God Bless!!

Friday, May 6, 2005 4:50 PM CDT

Madison was admitted to the hospital, yesterday. She went to the clinic w/ Aaron because of diarrhea issues. I was concerned about dehydration so they told us to bring her in to check her out. While there, she ran a low fever, so they decided to admit her. Her WBC is 0.1, so they want her to stay there while she recovers. She is still not eating alot. Her diarrhea doesn't seem too bad today. So far she has only had two episodes. We're just concerned about her not eating. She complains of her stomach hurting also. Aaron is staying w/ her at the moment, because we have to go to New York earlier than I thought. So I am trying to make all the arrangements. Most of the organizations that help w/ flying need at least 2 weeks notice. They want us there by the 18th of May for pre-surgery testing, as well as another CT. It's easier to assure a room at The Ronald McDonald House in New York, if we get there on Sunday, so that's what I am trying to arrange now. Her counts should recover by then, we pray. I am hoping she will be home by Monday. Yesterday members of the South Lafourche Baptist Church made a donation for Madison. Thank-you all!!! Every bit helps, and we are truely greatful to everyone's help we have received. May God Bless you and yours! Madison is unable to leave her room right now, and she's not too happy about that, but we pray her counts will recover so she can go there, as well as come home VERY soon. It's so hard not being there w/ her. I'll try to update again, tomorrow. Thanks for checking in on us, don't forget to sign the guestbook! God Bless!!!!

Wednesday, May 4, 2005 3:57 PM CDT

Madison has had a rough few days. She is on Tylenol w/ codiene around the clock for bone pain from one of her chemos, Vincristine. About an hour ago, she started having diarrhea. She's sleeping alot, and very unhappy when she is awake. She seems to be doing a little better today w/ the pain. She was uncomfortable there for a few days with the bone pain, pretty much complaining alot. Now she still has some pain, but not as vocal about it as she has been. I pray this will all end soon. I hate seeing her uncomfortable. We will start her Neupogen on Friday, and it will help her start to rebuild her WBC. She will start to feel better, I pray. We have to call Dr. Rozans in the morning to let her know how she is. We started her on Imodium AD, and will see how she does w/ it. She is still drinking and eating. We will try to keep giving her as much fluids as we can. Home Health is suppose to come out tommorow for her CBC. So we shall see. Her WBC on Monday was still 3.1 , but I'm sure it has dropped alot since then. Her platelets and HGB were also good on Monday. Please continue praying for her. I forgot to mention before, but while Madison was admitted for chemo, a dear friend and former nurse at Children's, Lauren, came to visit her. It was wonderful to see her. She is in Madison's picture album. She has been a wonderful friend to Madison through this, and has kept in contact w/ her even after us changing hospitals. We are truely blessed to have met her, and still have her in our lives. Congrats on your upcoming Graduation, Lauren. Thank-you for spending your day off to come and brighten Madison's day!!! You are a godsend, and a WONDERFUL nurse! We shall see what the night brings, praying she will become pain free and poop free. Thanks for checking in on us, God Bless!!

Sunday, May 1, 2005 7:32 PM CDT

Well, we are home. Everything went well, Thank GOD!!! Madison is expierencing some pains in her jaw and mouth. She also complained of her legs hurting, but these were all decided to be from the Vincristine. She did have some leg pains w/ this chemo before, but this is the first time she has complained of pain around her face. Dr. Rozans prescribed some tylenol w/ codeine, and it seems to help her. When she goes to eat something, I find that is when she complains the most. She doesn't have any sores or even white or red patches in her mouth, so that rules out mucositis. Thank God for that as well. We received some good news from Dr. Kushner concerning her bone marrow tests. It was all clean of Neuroblastoma!!! THANK YOU, Lord!! Now, we will wait for Madison to recover from this high dose of chemo, then fly back for surgery. She is tired now, so she has a few hard days ahead of her before she recovers. She normally winds up back in the hospital about 5-7 days after her chemo, because of a fever. We pray she won't get this, but we shall take it as it comes. If she has to go back in, we'll go in, let her counts recover, then prepare for New York. She truly amazes me at how much she has overcome. She is my strength, she keeps me going. This Mother's Day will mean so much to me. Last year was hard, but this year, I am SO proud to be the mother of my two wonderful children. I am So blessed to have them in my life. They have taught me so much about life. Lesson's I will never forget. We'll we don't know from day to day where our lives will go, but we will continue to take them, one day at a time, and live and be greatful for each day we have. Thanks for checking in on us, God Bless!

Monday, April 25, 2005 7:13 PM CDT

We talked w/ Dr. Kushner today, and thankfully it's not as bad as we were fearing. There is a spot on her left kidney, but that's it, it's not spread like we thought. The bone marrow aspirate's as well as biopsies aren't back yet. Dr. Kushner seems to think since she didn't have it in her marrow at relapse, she probably doesn't have it now. I pray for this to be the case. The plan is for us to start round 1 of high dose chemo(UGH!!) tomorrow, then return to New York around the 23rd of May(date not definate) for surgery to remove any remanants of the tumor. Depending on Madison's recovery(good)-we will come home and do round 2 of chemo(slow recovery)-we will do round 2 in New York. After that we will start the antibody therapy. We will discuss radiation after the 2nd round of antibodies. It's alot, but we're preparing ourselves, and praying Madison continues to beat this monster. We will go into clinic tomorrow after we drop Taylor off. Dr. Rozans is meeting w/ us to discuss everything. We will from there be admitted to the hospital for a 5 day chemo stay. I am hoping we will leave after she complete's the chemo, but this is some high dose chemo, so we shall see. Madison continuously shocks us w/ her strength, so we shall see, she is truly amazing. She doesn't even mind that we are going back to the hospital. She just says, ok. Oh, we met a few people in New York, but one I wanted to put his site up for everyone to read about his wonderful mother and country, Australia, who has raised all the money for Dylan to be treated at Memorial Sloan Kettering. His site is: www.caringbridge.org/me/dylanhartung He has been through so much, as many other Neuroblastoma kids have been through, but his mom is a good web designer, unlike myself, and she has alot of good links on there, as well as his journey. Please take a moment to visit and sign his guestbook. I know all the support we get feels wonderful. Thank-you all. That's about it. Thanks for the continued support and prayers, May God Bless You!

Sunday, April 24, 2005 12:21 AM CDT

We are currently awaiting results from Dr. Kushner on all testing done in New York. Madison had her last scan, MIBG, on Friday at 3:30, so there wasn't alot he could tell us when we met w/ him on Friday morning. He did say the CT showed a questionable spot on her left kidney. Aaron and I both wacthed the screen as they did the MIBG scan, and there was definately a big spot that illuminated in the left kidney area. We are quite certain there is once again another tumor. It looks, to us, to be a larger area then just the kidney. This was not the news we were hoping for. The last scans we had done were in December, and she was classified as Minimum Residual Disease. This is not minimal. We are also waiting for results from the bone marrow aspirates and bone marrow biopsy. We should hear from Dr. Kushner tomorrow. I am terrified as to what he will say. It has been 6 weeks since her last round of chemo and Neuroblastoma is such a monster. I pray that she will respond to chemo, like she did before. As of Friday, the plan was to come home and do one round of high dose chemo- Vincristine,Ironitecan,Cytoxan-then go back for possible surgery, depending on her, then do another round of chemo-then start 3F8 antibodies, and possibly radiation after the 2nd round of antibodies. This was all decided before Dr. Kushner had all results from all the scans/tests, so I don't know if things will change. Tomorrow will be the day that we will find out everything, I'm sure. Madison's right kidney is only functioning at 10% and the left one was at 90%, as of the last renal function test. That was quite a long time ago. Now knowing she has a new tumor growing around her left kidney terrifies me. Her blood pressure is good, now. I am praying it is not going to effect her kidney. There are alot of uncertainties, I know. All I can do is BEG everyone to please pray for her. We are pretty much starting all over again. I will try and update as soon as possible. Dr. Kushner wanted her to start chemo on Monday. I think it will probably be Tuesday. Thank-You to everyone who has helped us with everything. I can't think of a word that shows our appreciation. Please continue to pray for her, and our family. This is all overwhelming, and we are only just beginning, again. Thanks to all the guestbook entries, we love to read all the support from others. God Bless!

Wednesday, April 20, 2005 6:32 PM CDT

Well, we're in The Big Apple, and boy is it BIG!! We have been busy at the hospital w/ testing, but we did get to go to the Imax theater last night. We watched "Robots". Madison really enjoyed it, as well as Aaron and I. We don't know if we will have all the results back from all of the testing before we leave, but we should know a definate plan. Everyone has been really great in helping us get around the hospital. It is very big also. We went for a walk in Central Park today, and boy was it beutiful. We have met quite a few children w/ Neuroblastoma. As well as other cancers, but it really shocked me at all of them. The Ronald McDonald House is quite wonderful as well. They have a HUGE play room, that's where Madison likes to spend alot of time at. She has become good friends w/ one of the volunteers, and loves to make beaded jewlery. Tommorow we only have the MIBG injection, and then we will have the day to walk around the city more, and explore. Dr. Kushner and all the nurses are great. They have provided us w/ lots of info. Well the computer lab is fixing to close, I'll try to update again soon. Thanks for checkin in. The guest book was great to look at. God Bless!!!

Friday, April 15, 2005 8:37 PM CDT

Oh the days are getting near. We are trying to get everything/everyone ready for our trip to New York. We have so much to do. We have been showered with blessings this week. It has truly been AMAZING!!!! Holy Rosary Catholic church and it's members have been a God send. They have quickly raised MORE money for our trip. We got to go to Sunday morning Mass, but didn't really meet anyone. This week we have met quite a few people, and have truly been blessed by all. Madison got blessed by the Father. Everyone will be praying for Madison, and we can never have enough of those. We are going to church Sunday evening to meet more members of Holy Rosary Prayer Group. We met w/ Johnny and Carolyn Ougel, they are truly touched w/ a blessed spirit. They were very welcoming and eager to meet and learn more about Madison. Everyone has been SSOOO wonderful. I have thanked the Lord so many times this week!! We will be leaving New Orleans Airport on Monday morning. We have appointments all week long. First we will be meeting w/ Dr. Kushner. Then we will begin all of the testing(CT scan/MIBG scan/ECHO/Blood/Bone Marrow Biopsy/Bone Marrow Aspirate). I don't know what results we will come home with. We will see. They are doing a complete re-evaluation of her cancer. We are determining, from what I think, if we go home and do more chemo or start right away. I hope all the info they need is there. I hope they will be able to tell us alot, if not all, before we go. We will be returning on Saturday. We are flying through "Miracle Flights For Kids". Corp. Angels Network couldn't find a return trip, but we thank them for their time and effort in trying to help us. MFFK was wonderful. I called and told them what we needed and within 20 minutes I received a call with all the flight information. What a MIRACLE!!! God is GREAT!! Well, that's about it for now. We are enjoying being together and the weather before we leave. I'm nervous, but not fraid. I'm eager,but weary. I'm ready! Thanks for checking in on us! May God Bless You and Yours!!

Saturday, April 9, 2005 8:46 PM CDT

Everything has been set up for our trip. Dr. Cookie talked w/ the Dr. reviewing our case, and everything is approved. THANK YOU LORD!!!!!! We will be in New York from April 18th-22nd or 23rd. We will either get a late flight or next day flight on departure. Corp. Angels Network is suppose to contact us on Tuesday or Wednesday w/ all info on the flight. I have been actually trying to BREATH. I have been SSSOOO frantic lately trying to get it all together, praying it would all be approved. One of our local churches, Holy Rosary Prayer Group, made a donation for our trip. THANK YOU!!! Every bit helps in so many ways. There is also another Organazation-- National Childrens Cancer Society that we are applying for aide thru. I'm not quite sure what they can do, but all is appreciated. We are enjoying a beutiful weekend home. Madison's counts are stable. She is doing good. We are planning on attending church tommorow at the church that donated for our trip. We also had a blood drive there that did very well, as well as they were the ones who came and sang carols for Madison at Christmas time. We are truly greatful for the help we have received from them. Alot of the people have never met her. We will go and give thanks. Taylor has a school play he is in at 1:30, so we have a full day planned. I'm glad we have time at home to make plans. Madison and I have been planting flowers. She got a sunflower planting kit from Angel Jodi, and was quite eager to plant it. And then some!! Thanks for checking in on us, and please continue to pray for Madison and our trip to New York!! God Bless!!

Wednesday, April 6, 2005 8:18 AM CDT

Madison had to go in yesterday to clinic for platelets, again. I'm worried about her needing so many transfusions this time. We officially have an appointment set up at MSKCC in New York. THANK GOD!! All the insurance stuff has not come through yet, but basing it all on assumption, we have an appointment. If something happens w/ insurance, or we need longer time I can call and cancel. But we are PRAYING everything goes as planned. I got ahold of Corp. Angels Network. They hopefully will be the ones flying us to New York. Our appointment is April 19th-21st for new patient visit, as well as testing. We have to get a back up flight just in case the flight through CAN gets cancelled. This organazation flies sick people w/ the help of pilots who volunteer their time, but it is private planes they use, so if a meeting, etc. gets cancelled, so does the flight. Anyhow, I;m NOT complaining. Today I will look for an alternative, just in case. I have to contact the social worker in New York as well, to make plans at The Ronald McDonald House for our stay. I feel like I have been preparing myself for this, but now, I feel overwhelmed. I want to get Madison to New York, and God knows, I will do everything in my power to get her there. Judy and Dr. Rozans have been a BIG help as well. I am so thankful to have them. All of our care providers and friends at Tulane. Well, I'll try to update tomorrow with more details. Madison is doing well. She didn't want to go to clinic at first yesterday, but she got over it quickly. She always loves going, especially once she gets there. She has been spoiled so much by everyone. Once we're there, she doesn't want to go home. But she gets over that real soon to. Well, thanks for checking in on us. Please pray that all goes well with our arrangements and insurance. And as always, for Madison's continued improvements over this monster and good health. God Bless!!

Saturday, April 2, 2005 2:44 PM CST

Madison is doing well. She had to go in yesterday for platelets. Her counts are starting to improve, so they only gave her a 1/2 unit platelets. Judy, one of the Dr. Cookie's nurses, contacted medicaid again for us. She spoke to the Dr. that is reviewing Madison's case. He told her he needed to speak to Dr. Cookie about a few things, but everything looked to be accepted for her to get treatment in New York. We should know everything by Friday. Dr. Cookie is out until Wednesday, but he won't be able to get back w/ her til Friday. I am going to try to make the appointments for her at MSKCC, as well as trying to get a flight lined up. We will be going only for 3 days this time, to get all testing, scans and a re-evaluation of her done. I am eager to find out all of this as well. We haven't had any scans done for awhile, but they didn't want to scan her here, then put her through everything again in New York, so we wait. Anybody w/ any advice or expierence w/ New York and treatment there, please feel free to email me. I have gotten some good advice from a few people, and it has helped alot. Any info will be appreciated. Taylor has been out for Spring Break, so we have just been trying to enjoy some family time together. We went to the New Orleans Zoo after our clinic visit yesterday. The weather has been really nice lately. We received a package from Angel Jodi for Easter. Some yummy stuff from the Popcorn Factory!! Thank-you Angel Jodi!! We all really enjoyed it. Carol has been contacting people to help out w/ fundraisers to help out in New York. Thank-you Carol!! I am happy that everything seems to be falling into place, but so scared of the uncertain and unknown. I just try to take it one day at a time, and try to deal w/ whatever comes our way. I was saddened to hear of the Pope passing away. He was a wonderful man w/ many wonderful things that he has done in his life. Please continue to pray for Madison and all the other children who are/have battled this monster. Thanks for checking in, God Bless!!

Monday, March 28, 2005 12:07 AM CST

Madison is coming home from the hospital today. She was admitted on Thursday, March 24th. Also, my birthday. What a horrible present. She went to the clinic on Wednesday and received blood and platelets. Both were VERY low. She received the maximum she could for her body weight. Well, on Thursday when I got up to get Taylor up for school, I could feel the heat off of her body. I checked her temp. and it was 102.4 . Aaron went to the hospital w/ her. Taylor and I went to a Easter Egg Hunt on Saturday, then spent Sunday, Easter, at the hospital. We dyed eggs and had a hunt there also. Still nothing concerning New York. Getting very frustrated about all that, but still determined. Madison's counts are beginning to come up. She has to get a platelet transfusion before being discharged. Not the best Easter, but at least we were together. Hope everyone else had a wonderful Easter. That's about all for now, thanks for checking in.

Tuesday, March 15, 2005 9:31 AM CST

Aaron took Madison in today for chemo, so I thought I would update. I am trying to get all applications and phone calls in for all the organazations that can help w/ flying to New York for treatment. Yesterday while we went in the clinic for chemo, I made a few phone calls. I finally got ahold of the man in New York who helps handle out of town patients, and the insurance stuff we need to get. He told me to contact her case worker through Medicaid, and to tell them we needed an out of state authorazation. I called her case worker, but there wasn't much he knew, but he gave me the number to a lady in Baton Rouge. I called her, and thank GOD, that's the person I needed. She informed me of what they needed from the Dr., and said it would probably take 1-2 weeks. Which works out good, so I can get everything prepared. We have heard from one organazation, Miracle Flights for Kids, and they have approved us. The ONLY problem w/ this is they only pay for 1 parent to fly w/ Madison. So hopefully that won't be the only place, but if so, we are very greatful. They were very nice and helpful. Madison tolerated the 1st day of chemo well. She normally takes it like a champ, she's awesome. Well, lots of tasks to accomplish today, but thanks for checking in on us. God Bless!!!

Sunday, March 13, 2005 5:42 PM CST

We are all doing well. Taylor's birthday was on the 8th. We had a family party w/ him and on Saturday we took the kids, as well as my nephew skating. We all had fun. It's been quite awhile since I have been on skates. Aaron and the kids had never been. It was fun watching them fall, and get back up. Everyone had a good time. Madison mainly played games. Dad and I would switch out going skating. I'm a little sore today,oohh. We are going in tommorow to start another round of cytoxan/topetecan. She will receiving 5 days worth, Monday-Friday, but it will be outpatient. We will be able to go home everyday. The only problem w/ that is the price of gas(whoa!!). At least we will get to be together, and that's all that matter's to me. Dr. Rozans is suppose to get the numbers I have to New York, to find out what's the hold up. And also to see if there is anything she can do to help. I don't know what is taking so long. Hopefully we will get these answers soon enough. Well that's about it. We will be on the road all week this week, I will update when able. Thanks for checking in on us, May God Bless!!

Thursday, March 3, 2005 12:26 AM CST

Madison is doing well. We had a wonderful birthday party that we all enjoyed for her on Saturday. Aunt Tasha, Mark, Kimberly, Taylor, Dad, Mr. Tim, and Mrs. Carol all helped make it pleasant. It was wonderful, especially thinking back from her birthday last year. She was in for Transplant. What a year!!! Anyhow, we went in on Tuesday for her to get platelets in clinic, and she should be good to go. They did blood work on Monday at home, her platelets were 16,000. They went up on there own by Tuesday to 22,000. She still got a transfusion of 1/2 a unit of platelets, but that told us her marrow was recovering from the chemo, so she was starting to make her own platelets again. We are waitng to hear from MSKCC. Our doctor has gotten in touch with Dr. Kushner in New York. They want us to come in. She has sent her medical information. I have spoken to the nurse at Dr. Kushner's office about setting up an appointment, and have been told they had to wait for approval. So we wait. It sure is nice to be home, at the moment, so we are trying to be patient. We did find out in clinic on Tuesday that Dr. Rozans is usually the doctor that the state sends cases to that are trying to get out of state care authorization, to see if they truly can only get and need out of state care. Judy, Dr. Rozans nurse said we should have no problems getting it approved. That was AWESOME news to me. I was preparing for an all out war w/ Medicaid. I still will be ready if needed. i will do everything in my power to get my baby to New York. I feel our team here at Tulane will do the same. I thank God everyday for helping me find our Dr. and Nurses at Tulane. Oh, Madison will be going this Saturday to a formal Fundraising event for an organazation called Kids Kicking Cancer. They have helped us tremendously w/ reimbursement for many things like mileage, lodging expenses, compounding fees we pay for, as well as many other things. They are a great Organazation, and have helped many families. They do quite a few events for the kids throughout the year. They had to choose one family from Tulane to go, as well as one from Children's and one from Oschner. They will be there to show all the people, businesses, organazations, etc., where there money is going and to whom. We were very honored our baby and family were chosen to go. There will be music and dinner and a raffle. We already took Madison shopping for her new dress, and she picked out a beutiful one. We are all excited to get to dress up for a very exciting night. Well, that's about it for now. There's alot going on, but were enjoying every minute of it. Oh, almost forgot, Daddy had a birthday on Tuesday as well. We had to spend it at the clinic, but we left after the appiontment and got to be together so that's what really counts. Everyday is a blessed day that we are home together, as a family. Thanks for checking in on us, til next time, May God Bless You and Yours!!!!

Friday, February 25, 2005 11:43 AM CST

Madison is finally home from the hospital. She was in for almost 2 weeks. A few days after we came home from the hospital for chemo, she ran a fever, runny nose, cough-- the flu. Taylor and I also had it. Aaron went to the hospital and stayed with Madison, while Taylor and I stayed home and fought it out together. We're all over it now, for the most part. Madison still has a lingering cough, but it is going away. She came home on antibiotics, but has now stopped them for the moment. The home health nurse came out yesterday and did blood draws. Her Vancomyacin levels were high, so we stopped and are awaiting the labs from today's draw. She is doing wonderful, though. Full of energy and VERY glad to be home. It has been a long time since she has had to stay at the hospital for that long. The wonderful nurses and doctor's(interns/resident's included) gave Madison a little Birthday party on the day she was discharged. It was wonderful and so very thoughtful and caring. Now I am trying to get everything together for her party. Her birthday is tomorrow, but the party will be on Sunday. We will still have a little family celebration tomorrow, though. That day means so much to me, and I will be greatful for every Birthday I get to celebrate. Madison and Aaron have left for Wal- Mart. She is getting a new swing set for her Birthday. She wanted to go and get it, she is so excited about that. Dad's going to have LOTS of fun putting that thing together, HA!~ Oh, we also had a blood drive for Madison on Monday at a school cafeteria -- Holy Rosary Catholic School--. I'm not quite sure the outcome, due to our trip to fluville, but a friend of ours, Tim, went and gave and said there were a few people at that time, so hopefully it went well. I'm sorry for the LONG delay in entries. I have never had the flu, and I don't think I have ever been that sick in my life. I was DOWN. But, we're all better, thank GOD and now we can enjoy and celebrate the birth of my daughter. How great is that? After, I have to start on getting things together to get Madison to New York. The insurance battle begins. Thanks for checking in on us, may God Bless you with good health and happiness.

Monday, January 24, 2005 2:20 PM CST

We had a good weekend. Madison went in on Friday and received 1/2 unit of platelets. She did well over the weekend. We had Mark, my nephew, over and we enjoyed him coming. Still waiting to hear about New York. Grammy Helen sent a comforter for Taylor that we all loved, especially him. Praying she gets over her cold, and for Aunt Pam as well. That's about it. We are talking w/ people about blood drives, and hopefully we will figure out some fundraisers. Staying busy, but enjoying getting to be home. Thanks for checking in, God Bless!!

Monday, January 17, 2005 11:35 AM CST

Madison was in the hospital over the weekend, Friday-Sunday. She started running fever, but all of her cultures were negative, thank GOD. I think it was due to her starting her Neupogen shots about 3 days after she finished her chemo. We usually start 24 hrs after. Aaron went in w/ her to the hospital. Her platelets are still low, so I think we will be going back very soon to get platelets. She is doing well, though. She is eating good and full of energy. She still complains of her feet hurting and itching, but the tylenol w/ codeine seems to be working for that. We are still awaitng news from New York. Dr. Cookie told Aaron that she would contact them again this week. I think I will also try to contact them myself. I have spoken w/ Dr. Modak(?) there and also have e-mailed Dr. Kushner before, and they returned my inquires, so I will try again. Taylor has the day off today, so we will go to the park. Her WBC is still very low, so the park is the best place to go. Well, that's about it. Thanks for checking in on us, and please continue to pray for Madi!!!
God Bless!!!

Wednesday, January 12, 2005 10:40 AM CST

Madison is doing well. She has only had a little nausea in the morning, but the Zofran controls that. We are still awaiting an answer about going to New York. I am praying all goes well. I am also worried about our insurance covering her in New York. We have only Medicaid, but our Dr. says she will write a letter explaining that this is the only place that this treatment is available. She seems to know alot about it, and says she has sent other children out of state on medicaid for treatments not done here. We are also trying to get a few fundraisers going to prepare for our trip. If we do get excepted, there are organazations that will HOPEFULLY help w/ transportation issues. We will be staying at Ronald McDonald House which is alot cheaper than a hotel, but at 20.00/night it will add up. From everything we have read we will probably be staying at least 2 weeks. I have 2 donation accounts set up at local banks. I am trying to come up w/ ideas, but have not been successful. We printed an ad in our local paper for a non-profit oranazation that would like to help, but we had no response. If anyone has ANY ideas that may help, please let me know. We have to go get counts on Thursday, so I will try to update again after that! Thank-you for checking in on us, and God Bless!!!

Friday, January 7, 2005 2:34 PM CST

Sorry for the late update. We got back from Illinois on Friday. Dec. 31st. What a wonderful time we all had to be with family and so many people to care and love us, it was wonderful. We got a much needed break from the cancer world, for just a little while. Madison did well while we were there. No unexpected visits to the ER, Thank GOD! We got to go to church w/ Aaron's grandparents, and they welcomed us and prayed w/ us. It was nice to meet some of the wonderful people who had been praying for our family all this time. We got to see snow. not a whole lot, but to the kids and I it was like a blizzard of snow( only about an 1/2 an inch) but it was a blessing. We found out later it snowed here in Louisiana, which is very unusal. I guess God was gonna give us snow, no matter where we were this year. I am so very thankful we were able to get to Illinois, though. We all had a wonderful time. I am so greatful to be part of such a great family in which Aaron has.
Madison went in for her 6th round (topotecan/cytoxan) on Monday. Today will be her last day of chemo for this round. We were able to get this round outpatient, so we have been back and forth since, but she has tolerated it well. She is eating well, only some complaints of nausea in the morning. The zofran seems to help. She has complained of foot pain on the bottom of her foot. We are giving Tylenol w/codeine and it is helping her. It is a side effect from one of the chemo's.
i got to go down to radiology w/ Dr. Rozans yesterday and compare madison's scans. we looked at the ones from relapse in October to the ones in december, and we could see a real difference in size in the one in her abdomen. You can barely see a shadowing left, and nothing showing in her femur (around her hips) or legs. Dr. Rozans has sent her medical history to New York and is also going to talk to CHOP about other options that they may know of. I truly hope that she will be eligiable for 3f8 antibody treatment in New York. Hopefully we will know something next week. Well, that's about it. Thank-you all for checking in on us. Sorry it ttok so long to update. I hope everyone had a great Christmas, and will have a blessed and healthy New Year!! God Bless!!

Friday, December 10, 2004 7:16 PM CST

We got wonderful news from Madison's recent scans. We went in for her fourth round of chemo (ICE) on the 30th of November. We were in for 5 days. While we were in she got recent scans-- CT, Bone Scan, MRI. As of the beginning of this cycle of chemo, the tumor in her abdomen has shrunk significantly. The spots on her right pelvic area as well as the spots on her left and right legs is showing clear. Thank-you Lord!!! Nothing else has appeared anywhere else. Dr. Rozans is suppose to contact New York, so we can see what we have to do to get her there for antibody therapy. We have managed to stay home since we were released from the hospital. No infections, no fevers! Thank GOD!! We had to go in today to get platelets. We were suppose to get red blood cells as well, but her HGB has improved since yesterday, so they think she is beginning to make her own. We will get blood work done again on Monday to make sure she is ok. We are hoping (PRAYING) that we will be able to go to Illinois for Christmas. Dr. Rozans said we can go if all her counts have recovered. I think they are on the up, so hopefully that will be a wish come true. The Shriners came by and donated a tree, some gifts, and a Christmas Dinner for us. What a blessing. They had some clowns come by and give it to the kids. It was wonderful. We are truly blessed to have people in our community do for us, w/o asking or anything. We will not go in for chemo until after Christmas, but we will continue to get blood work, as well as transfusions if needed. Well, our lives have been very eventful lately, but gladly all positive events. Thank-you for checking in, and may God Bless you all!! I hope everyone has a wonderful Christmas. Ours will be even more BRIGHTER thanks to the wonderful news!!

Sunday, November 28, 2004 8:32 PM CST

We had a wonderful Thanksgiving. We had alot to be Thankful for. Most of all, we were home together, as a family, enjoying our time together. Madison has been doing well since we have been home. She is scheduled to get her blood counts tommorow, here at home. On Tuesday we will go into the clinic to be admitted for her next (3) round of chemo. We will also be getting scans done. I am anxious to know how she has responded so far. Or shall I say the cancer, she's doing great! I am hoping it continues to shrink from the chemo. We stayed home for lunch, then went to Grand Isle for Dinner at my sister's, and then to my stepmother's for Thanksgiving. I pray Madison will do well, as well as she can, with this chemo. Please pray for her continued strength, and contiued response from the chemo. Thank you and God Bless!!

Tuesday, November 16, 2004 8:27 PM CST

Well, Madison went to clinic yesterday. She received a platelet transfusion, and we are continueing her Neupogen shots until her white blood count is a little more elevated, it is rising. She has been doing great at home. She had a day, a few days ago, that she complained of her feet hurting, and she walked on her tippy toes alot. She would cry and want me to rub her feet. I called the Dr. and told them, so we could see about getting in for scans, but she hasn't had anymore pains since, so we will wait til she is admitted possibly next week for chemo. I am scared of this round. It took her a real long time to recover from this chemo on her first dose of it. This will be her 2nd, and she still has one more of it. ICE-- it even sounds bad. She has been enjoying being home and playing outside. She never stops, she's amazing. Well that's about it, and thank God for that. Thanks for checking in on us, and keep her in your prayers!! God Bless!!

Tuesday, November 9, 2004 9:03 AM CST

Madison is doing well. She came home from the hospital on Sunday. Aaron went and stayed over the weekend w/ her, and me and Taylor went and had some much needed time together. We spent the day at Chuck E. Cheese's, and went and got some warmer school uniforms. He loved getting out of the house. Madison's counts are pretty good for just completing her 3rd round of chemo. We didn't get scans this round, but we will when we go in for her next round. We got to do most of this round in outpatient clinic. That was nice for a change. She only had to go in for the weekend, at the hospital, because the clinic is closed on weekends. She looked much better on Sunday, I think do to the fluids she was receiving. She had color back in her cheeks, she looked refreshed. Dad had fun keeping her busy during her stay. We stay in the play room more than the hospital room during her admit's, thank God for Childlife Dept. She is doing well overall. No vomitting, appetite alright, but we're working on that. She's glad to be home, and we are glad she is as well. Thanks for checking in on us, and please keep us in your prayers!

Tuesday, October 26, 2004 1:04 PM CDT

Madison's counts are finally starting to come up, Thank God! This is the longest it has ever taken her to recover from a round of chemo, including during transplant. I am glad to see her counts recover, but I can't help and wonder how she will respond the next 2 times she is suppose to have this chemo. We were suppose to go in for her 3rd round of chemo last Wednesday, but we were still waiting for improvement in her counts. Her WBC is high, her HGB is good, but her platelets still don't seem to be producing on their own. She has had multiple blood, but mainly lots of platelet, transfusions. Maybe we can talk Dr. Cookie out of letting us stay a few more days, and hopefully Madison will get to go trick or treating. She was in the hospital last year. She dressed up, and we decorated her room, but it still isn't the same. She is still running around, and full of energy. Her appetite hasn't been as wonderful as it was, but she is still eating and maintaining her weight. We will get counts done on Thursday, and go from there. Well, that's about it. Thanks for checking in on us, don't forget to sign the guest book. We all love reading that!!! Continue to pray for her strength against this horrible disease. Thank-you, and God Bless!!

Monday, October 18, 2004 4:04 PM CDT

I'm sorry it has been so long since I have updated. I have so much going on lately, way too much!! We had a wonderful trip at Disney World! It was so great to get away and forget about(or try to) the everyday routine we call life now. We came back on Friday and then the following Tuesday we went in for Madison's 2nd round (ICE). She tolerated it well in the hospital. We went home after a 5 night stay. We stayed home 5 days and then we were readmitted for fever. We finally came home from that 5 night stay on Thursday. Madison's counts are not doing as well as she has in the past. It's taking alot longer for her counts to recover. We are going in tomorrow for blood and platelets. I'm praying she will not catch fever after. The last platelet transfusion she raised a fever after receiving platelets. She was suppose to start her next round tomorrow. I'm certain she won't be able to. She is still getting her shots of neupogen to help elevate her WBC. It is still very low. She is also getting IV antibiotics 3x a day to prevent infection while her counts are so low. All this is happening on the inside of her. On the outside, she is full of energy, and a handful to make happy and please, but what a joy! She is rather picky. Her taste buds change so much day to day. She is still eating and drinking well. She is still running around and staying happy. I don't know when she is going in for her next round, but I should tomorrow. I will try to update more, sorry. Her limp is really not there anymore. She is running not hobbling along, so that's always great! She is ready to go back outside. I try to take her outside for a few minutes, but she really needs to stay inside. She"s staying busy, though! Thanks for checking in! I'll try to add more details to our trip next time, gotta go cook dinner! God Bless!!!!

Thursday, September 2, 2004 9:10 PM CDT

Well, we are back from round 1 of Topo/Cytoxin. Madison tolerated it well, amazingly. We are at home, trying to enjoy being home. There is a nurse who comes daily to check Madison's vital signs, and check's up on us. We get blood drawn on Monday's and Thursday's. The nurse brings it to our local hospital, and they fax the results to Tulane. If her counts look like she will need a transfusion, they will make an appointment for the next day in clinic, and she will go in as outpatient, then come home after. We discussed having her home as much as possible through all of this. Her Dr. is so wonderful to set this up. Madison is getting her trip to Disney World. Her original trip was scheduled for Sept. 18, and when we just found out she relapsed, I was afraid she would have to wait. Dr. Rozans said, there couldn't have been a better time. We will resume chemo the day after we get back. The kids are SSOOO excited. I'm nervous/scared, but also so very greatful that she, as well as our family, get this expierence. We don't know what tomorrow will bring, but I can make the best out of today. I am a rollercoaster ride of emotions right now. I am more of aware of all the little things that didn't really matter before. I feel like there is an empty spot in my stomach and it has an awful feeling. I stay focused on making sure Madi is happy and busy during the days, but at night all of my emotions come pouring out of me. They are hard, because all I think of are the what-ifs, and what the future will hold. On another subject.... we are suppose to have a little going away party for Madi, she will love that. Her spirits are good. She is such a resiliant fighter, she amazes me so much. Taylor is doing well in school. He has a good teacher who is helping deal w/ feelings at school. It is horrible when you can't be there for both of your kids. You just want the world to stop, and keep them there together forever, with you. Madison's CT of her head and orbitals came back negative, thank GOD. She has been having pains, or maybe more like burning in her eyes. We don't know why. We now know after more testing, that she has Neuroblastoma wrapped around her aorta in he chest, one spot on each sides of her pelvic areas, and a spot on her rught knee. MIBG had no uptake. Which was horrible news, because to be eligible for MIBG therapy, there has to be uptake on the scans. We were told this could change, though, so we shall see. Her bone marrow aspirate, and bone marrow biopsy came back clean. This puzzles me so much. You would think that after a stemcell transplant, where they kill all your cells off, then rebuild your system back w/ harvested cells from before transplant, that would probably be the main site for relapse. Not in this case. This is a horrible disease that just hides and lurkes and doesn't always show up on scans. How unfair for our babies. Well, that's it for now I guess. i wanted to say a great BIG THANK-YOU!!!, to everyone who has sign the guessbook, and who continues to pray and keep our family in your thoughts, God Bless you all. I will try to update as often as I can. Good Night!!

Tuesday, August 24, 2004 3:40 PM CDT

We are going to start topo/cyclo on Thursday. We are going to also do I.C.E. It will switch between each, every round. We are going to try to get her back to NED, or at least minumal residual disease left, then try MIBG, then hopefully try antibodies in New York. It is still very early, so we don't know how she will react to treatment yet. It has only been 6 mos. since her transplant, so it's not the best timing. Anyways, we will be going tommorow to get an MRI, and MIBG injection. On Thursday Madison will be going in to surgery to have her line put in, get a bone marrow aspirate and a bone marrow biopsy. We will then be admitted to the hospital to begin chemo. I still have hope and I pray to the lord multiple times daily. I'm not ready to lose my little girl. As long as she is healthy and fighting this disease, I will fight w/ her. She looks so healthy. You wouldn't even think the cancer was eating her up in side. I hate this. She doesn't have any pain, though, thank god. She still is full of energy and full of life. I have read that the ICE is harsh on the kids. i hope it is not too much. I am worried about her immune system, I'm worried about her kidneys, I'm just terrified of all the things that could happen. I pray she is strong enough to handle all of this poision again. I pray that she will have a response like the last time, quickly and effectively. I am SSSOOO very thankful for our Dr. Rozans. She has contacted other hospitals and spoken to colleagues, as we asked her to with no second thought. We are truly thankful for her. She has spent quite some time answering questions, by phone as well as in person for me. All we can do know is pray with all our soul and hope that our baby will be saved from this monster again. I know the odds are against us, but we will fight, as she is able to. Please pray for her, God Bless!!

Saturday, August 21, 2004 8:45 AM CDT

Madison has relapsed. We found out yesterday during all her scans. My worst nightmare has happened. I am so hurt, scared, confused. I don't know what to think anymore. The scans shows cancer regrowth in her left pelvic area, her right knee, and back in her abdomen, which was the original site(ab). We meet w/ doctors on Tuesday to discuss further options. I will keep you updated, as well as I can. Right now I want to spend as much time w/ my babies. I am still in shock. It doesn't seem real!!!!!!!! PLEASE pray for my baby!!

Thursday, August 19, 2004 11:15 AM CDT

Well, Taylor is back to school, and so happy he is. He started last Thursday, and likes his teacher alot. Madison has been doing well until a few days ago. She started limping. It worried me, but she was in no pain. On Monday I called the doctor to get her in to be seen. We went and did blood work at our local hospital. The nurse told us sometimes if the calcium is elevated, it can do this. Madison is just on her 1st week of accutane round 4. She has had calcium problems before. Come to find out, her calcium is a little elevated, but her doctor made an appointment for scans and a visit tommorow. I am terrified of what will happen. I am praying my heart out that it is nothing, but one never knows. It's horrible how you react to what seems to be minor, but after being diagnosed w/ NB I won't take any chances. I want to have faith, and I do, but I am so worried. She complains of her left leg hurting, but not alot of pain. That is the side she is limping on. Please keep her in your thoughts and prayers. I will update as soon as possible.

Thursday, July 29, 2004 10:29 AM CDT

We got back yesterday morning after a very long drive from Illinois. We are so greatful to Pat Tullungan of CNCF for helping us get to Chicago for the Neuroblastoma conference. It was very informative. We spoke to a few parents, but not as much as we should have. This was our first conference and I found it difficult to bring myself to talk about Madison, being that she wasn't there. This was also the first time I have been away from her that long. I would have liked to meet up w/ some people that have followed Madison through her website. I did get to meet an angel parent, Laura, and I am very greatful for that. She is an inspiration to me. I am VERY greatful we got to go. It saddened me to hear some of the other children's stories. Aaron and I don't know what the future holds, but we are very greatful that our daughter is doing so well compared to others. I felt a little guilty comparing our situation w/ others. It is so crazy how it is the same disease, same stage, but the outcomes for each child is so very different. We met alot of determined Dr.'s there also. You always hear about the negative--not enough things are known about Neurobalstoma--but meeting these Dr.'s that spend their lives to try to save our daughters and so many others, is very reasurring to know. They give us hope when there is little. Madison is continuing to do great. She, as well as Taylor loved the mini vacation. We got to visit w/ Aaron's family that we don't get to see that often. It was a wonderful time for all of us. It was nice to be able to go. I was worried the whole time, but Madison did great. She stayed w/ Grammy Helen, as well as Taylor, while we went to Chicago. They live in Sterling, which is about 100 miles from Chicago. We have a check-up tommorow in New Orleans to check Madison's levels. She finished her 3rd round of accutane today. She is still doing great w/the accutane dosage also. Please continue to pray for her, as well as all the others dealing w/ this horrible monster. God Bless!!

Monday, July 19, 2004 1:42 PM CDT

Madison is doing wonderful. Since the accutane was adjusted to 40 mg once a day her calcium levels have done much better. They do elevate, but return to usual after her two week cycle. She started her 3rd cycle last Thursday. Only 3 more to go. Her counts continue to be good. She hasn't had a platelet transfusion since we were in for transplant in Feb. and hasn't had a blood transfusion since about 2 weeks out of transplant. she is going strong, and I pray she will continue this successful and have a long, healthy, happy life. We are leaving on Wednesday to go to the Neuroblastoma Conference in Chicago. I am eager to learn anymore info from the specialists that will be there. They will be covering alot, so it will educate me alot. Please continue to pray for her and her continued good health. God Bless!!

Tuesday, June 22, 2004 10:15 PM CDT

Well, Madison is doing well. She had a bone scan, CT, GFR, and Mibg and all is well. All of her chemistry has come back done to normal, thank god. We have decided to cut the Accutane dose in half and see how she reacts to that. We get her chemistry and CBC done on Mondays and Thursdays at our local hospital, and during her two week cycle on she will see Dr. Rozans once a week. They want to keep monitoring her during her treatment to watch for any elevation like before. She started her second cycle on Thursday last week. She doesn't seem as fussy as before. We'll see how that goes. She got her line taken out, and boy is she happy about that. We have a pool at home that her and Taylor practically live in. It is shaded to try to keep the sun off of her. She is full of energy and so carefree. I love to be able to be home and enjoy this time w/ both my kids. Taylor is enjoying being home, and doesn't seem to mind the hospital visit's too much. I've only heard the dreaded "I'm Bored" a few times. More to come, I'm sure. I was happy to finally get the MIBG. It had been awhile since her last one, but I was very relieved to hear no uptake!! Her kidneys are still functioning the same. Left one @ 90%, right one @ 10%. We will all be watching them as well as calcium levels. We found out Madison's Make a Wish came through. We will be going to Disneyland in September. The kids are VERY happy about this. I am happy but nervous. First trip since diagnosis last year. We are going to try to go to a Neuroblastoma conference the last week in July in Chicago. I really hope we can. Dr. Rozans said we can take off the mask in public places now. Except at hospitals, of course. She is doing pretty well w/ that also. We are all just enjoying our time together as a family, in what is somewhat our new normal lives. We will keep praying for good health for madison, as well as others we have met fighting this horrible disease, cancer. Well, goodnight and God Bless!!

Sunday, June 6, 2004 10:07 AM CDT

Madison is currently in the hospital. She started running fever last Sunday night at 10:00. She had positive cultures from her line, so they began antibiotics. On Wednesday they decided to take her line out. While there, they noticed her trygicerides were very elevated, as well as her calcium, BUN and Creatine. They feel this all has to do with Accutane. She finished her last dose of round one of Accutane on Thursday. She is suppose to take it 2 weeks on 2 weeks off for 6 months. They are monitoring her to see now that she finished the accutane if everything will return to normal. Yesterday her calcim levels did come down a little, but BUN and creatine levels are still the same. Dr. Rozans is considering lowering the dose and putting her on a one week on one week off schedule. She will have to be monitored a lot closer, which I am glad of. We will go to clinic once a week and get blood tests done here at home to monitor all of this. She is still in the hospital. Hopefully we will get to come home soon. One good thing is, the line is out so she will get to be more free in that aspect. But on the negative side, she has to be stuck alot more for blood. She also doesn't like the IV in her hand much either. She is adjusting though, like she always does. I am glad she is off the accutane for now. She is starting to be not as fussy. That stuff really does a number on her all the way around. if she persist to have problems we may have to make the choice of wheather or not to leave her on it. That is scary to think about, but so is renal failure. Well, that's about it for now. Try to update in a few days! God Bless!!

Thursday, May 27, 2004 9:33 PM CDT

Sorry, not to update sooner, but I just found out about the results of Madison's scans. We had a hectic few days, lately. Madison is doing good. Dr. Rozans said there is still a slight bit of something showing on her bone scan, but they don't believe it is Neuroblastoma. They took x-rays of her pelvic area to, so they had a look from every angle. She said she could have bumped something the night before , and could be showing up. That's how sensitive the scans are . When your looking for a tumor that's a good thing. But when it is so mi-nute, that's not good because that shows up. They are going to wait 3 weeks and redo them. She is doing good. The accutane is probably the culpret of her being so fussy. Dr. Rozans said either the med itself or the dry, dry skin she has started to develope from it. She is eating well. The last time we went, she was weighed and she had gained some weight!! She loves getting to go outside. That's where we spend most of our days. Taylor is now on summer vacation, so she's glad he's home. Well, that's about it. Thank the Lord!!! I am glad I don't have much to talk about. Thank you for checking in on us! God Bless!!

Monday, May 24, 2004 11:26 AM CDT

Madison has been doing well. She has finished her radiation and has now started Accutane. I am SSOO nervous about the Accutane w/ her problems already w/ her kidneys. She has had a bit of a change in her behavior. She started the first dose on Wednesday of last week. She is more moody. She fusses alot more. These side effects i can handle, though. I am terrified of what will happen tommorow. I found out when I brought her to clinic last week for her last IVIG, that the last bone scan we had done, just after we started radiation, that there showed uptake in her pelvic area. I don't know why we weren't told sooner, but i am praying all is well. Her Dr. wants to redo the bone scan and see if it is still there. I beg to God that it is no longer there or that it was a mistake. Madison has been through so much, I don't want to think about reliving it over again. I will post tomorrow what we find out. PLEASE pray for her!!!!!!

Monday, May 3, 2004 8:39 AM CDT

Madison is home now and doing well. She has a rash break out, so they discontinued 2 of her antibiotics. She is still on one we give her at home with an IV pump. Thursday will be her last session of radiation. She has done exceptional. I am so proud of her and so impressed by her strength. She continues to amaze me every step of the way. She hasn't had any side effects from the radiation, and I pray that continues to remain. Dr. Rozans said she will get her line taken out after radiation. We are SSSOOO happy about that, and I know Madison will be also. She loves to play in the water, and swim, and go to the beach. She hasn't gotten to do any of these things for quite awhile, so I know she will glad to get to this summer. Friday, we went to Relay For Life sponsored by American Cancer Society. I think Madison was the only child w/ cancer there. I didn't notice any others. There were alot of adults. We met alot of people, and we thought it was a wonderful thing to see so many survivors. No one had heard of Neuroblastoma. There are so many out there who don't know of this cancer. We are so excited--- Grammy Helen, Nana, and Grandpa Dunn will be coming to visit next weekend. We haven't seen them in awhile, so it will be wonderful to spend some time w/ them. Please continue to pray, as we feel the power of prayer. Don't forget to sign the guest book!!!

Tuesday, April 20, 2004 9:04 PM CDT

Madison is currently in the hospital. Friday night she was admitted. She threw up about 10:30 pm and had a temp of 99.1 . I gave her some Zofran(nausea med) and cleaned her up, and she went back to bed. About 12:00, she woke up and threw up again. She had a temp of 101.3, so I called the hospital. We packed up a few things and her father, Aaron brought her to the hospital. I didn't know they would keep her for so long, I hate being away from her and her having to go back to the hospital. They said she has a stomach virus. She hasn't thrown up anymore, but has had fever a couple more times. She is doing better now, and they will begin her radiation tomorrow. I know they said radiation would cause nausea, i hope it doesn't irratate her stomach too much after getting over this. She is suppose to come home on Friday, she will continue her antibiotics for 2 weeks. I am so scared of this part of treatment. She has done extremely well so far, but the one good kidney she has will be part of the radiation field. They said they would block as much of it they could and lowered the dosage, but i am so worried. Please pray for her, and that this will not lead to renal failure. We have felt the power of prayer, and thankful to everyone who has thought of her in their prayers. She will have 12 rounds of radiation.

Wednesday, April 14, 2004 11:27 PM CDT

Madison is doing well. Very well, actually. We had a wonderful Easter. We went to Grand Isle and had a great visit w/ family. She still hasn't started radiation. We are suppose to start on Monday. She will be having 12 rounds of radiation. She will have it Monday-Friday, and have weekends off. There has been a delay because they did MANY tests to plan for radiation. Madison's right kidney is only functioning @ 10%. The left one, which is the original side the tumor was on, is functioning @ 90%. They have been working up a plan to prevent any further damage to the good kidney. Eventually she will have the right kidney removed. Dr. Rozans told us it will probably be about a year out before she will be up to this. Madison is full of life. She is happy, playful, eating well, and gaining weight, YEAH!!!! All of her scans have not shown anything on them, this is awesome. She hasn't had an MIBG scan yet, but will have one probably after radiation. Her hearing is still normal. She will be radiated in certain areas from her neck to her pelvic area. All areas that showed cancer on her original scans will be radiated. I am so nervous because some of her heart, lungs, kidneys, and liver will be in the radiation field. I have researched and asked MANY, MANY questions, I feel a little more prepared. After radiation, Madison will go on Retonoic Acid for at least 6 mos., and then we will go from there. madison is still getting her IVIG, which helps build the immune system. She will get this til day +100. Today makes day +62 and counting. After she finishes this, I have asked Dr. Rozans if she will be able to get her line out. Anyone who knows Madison, knows she LOVES to be outside. Her favorite place is the beach, and she loves swimming in a pool at home. She hasn't gotten to do either since August. Dr. Rozans said she thinks it will be able to be taken out, but we will see. She will not be taking any IV meds, and she will only be going to clinic eventually, once a month for check ups, and every 3 months for scans. I pray to god daily that all this will happen and she will continue to do so well w/ treatment. I will update next week during radiation. Please continue to pray for Madison, the Lord is listening. We are so thankful for MAny things, but mainly how well she is doing w/ treatment. God Bless!!

Saturday, March 27, 2004 7:05 AM CST

Madison has been doing great. She loves to play outside, so we spend most of our time there. On Monday we have to go in for her CT scan. I hope all is still well. She also has to get her weekly IVIG and see the kidney Dr. On Thursday we have to be @ outpatient surgery for 5:45 am. She is getting a CT and simulation for radiation. It won't begin on this day, but the CT is more detailed so they can plan her radiation treatments, and also to prevent any radiation to any organs. I am so nervous about this. Everyone says not to worry, but she is so healthy and happy right now, I hate to bring her down. Taylor is really enjoying all of us being home too. We went to clinic on Monday and all of her counts were still great! She is still having problems w/ her blood pressure, so they put her back on the Labetelol. I'm gald. I hate changing and trying something different. The Labetelol is a medication she was put on at the very beginning, and it has always seemed to work. Her radiation treatments are not suppose to start until April 12. The day after Easter. I was pleased to hear this. She is so excited about the Easter Bunny. We don't know alot of details yet, but we will find out on Thursday. I do know she will have radiation every day Monday - Friday for 2-3 weeks. Were not sure of the exact places or the amount, but that will all be answered on Thursday also. Well, I will keep you updated. God Bless!!!

Saturday, March 20, 2004 1:08 PM CST

Madison is so happy to be home. She hasn't taken that smile off her face at all. I love seeing us ALL happy, together. Aaron went and took the kids to the park. I just steam cleaned the carpet. While waiting, I thought I would write. Today is the 1st day in a long time I have been alone. I have been cleaning and listening to music, and my heart just melts at certain songs. I guess while I was going through all this, I wouldn't take time to look at that day. Only now that we are out of transplant, do I really reflect on the expierence we have just went through. It was so scary at times, but all in all we had a positive transplant. I thank god everyday for giving me the strength for all that comes my way. I thank god for getting her to a much more better facility--Tulane. Better for her health as well as mine. I truly feel the doctors and wonderful bone marrow nurses were there for my family through all of this. They are truly what has made this expierence more tolerable and able to handle. I can't say enough about the wonderful care Madison and I got. It is so much easier to trust your kids life to someone you truly feel comfortable with. The song "In My Daughter's Eyes", sang by Martina McBride is a song that truly hits straight to my heart. I cry because it makes me realize EVERYTHING we have been through so far. Everything we have to be greatful for. How strong of a fighter my baby truly is. Life is so much clearer to me now. I love my kids, and I am thankful for alot of things in our life, but I know how precious life is now. I will never forget this. I guess I always assumed my kids would be healthy. I did what I thought to keep them that way. This is something I didn't cause, but now that we have to face it, I will do everything I can to try to keep it as positive as I can. Madison does so much to keep herself healthy, I will fight right along w/ her. I am praying she will stay healthy, but I will stand there w/her through every obsticle. We are suppose to start radiation soon. I am a little nervous about this, but I know together we will get through it. Well gotta go do the floor. I am so glad to be home. God is GOOD!!

Thursday, March 18, 2004 12:53 AM CST

SSSOOO sorry I haven't updated sooner. We have been REAL busy. We got to leave the hospital to go to the Ronald McDonald house on Thursday(11th). The nurses informed me on Wed. that Madison would only be getting her blood counts done on Tuesdays and Fridays. To me that meant she was doing really good, so why wouldn't they let us leave. Before transplant we would go to our local hospital for blood work on Monday's and Thursday. They would fax the results to Dr. Rozans at Tulane. Nurse Judy would call later w' the results, and let us know if she needed to come in for blood or platelets. Now, were after transplant and they want to do this, but we needed to stay in the hospital??? So when Dr. Rozans came in on Wednesday, I asked her when we would get to go home. She told me as soon as she starts to eat more. I told her, I really felt if she gaves the chance to go to the Ronald, that I would get her to eat. We had been discharged from the hospital before and she was only eating bread and water. Once I got her home, I got her to eat again. Okay, she said, lets make a plan. Okay, I said. She said how about tommorow? I about fell over. Tomorrow, tommorow??? I said. So she started linig everything up and we got discharged about 4:00 p.m. on Thursday. WHEW WWWHHHHOOOO!!!!! She said we would have to stay no longer than a week, but she wasn't making any promises for on Tuesday. We had to return to the clinic on Tuesday to get a check up. If she doesn't eat or if she needed fluid, I neede to take her back in. I had MaNY numbers to contact people in case of an emergency, including Dr. Rozans. I was happy, but oh so nervous!!! Dr. Rozans said Madison could go outside, but to put a mask anywhere else(stores,hospital,any indoor places). On Saturday we took her to the park. She rode on a train and the caroussel. She ran and ran, and loved being outside SSSSOOO much. We went to City Park in New Orleans. They have a little amusement park and a Storyland walk through. It was only $2.00 per person and we just go a few tickets for a couple of Madison's favorite rides. After that we went to the park(regular) and the kids loved it. Taylor and Aaron came up and spent the weekend. It was awesome. ALL of us enjoyed the weekend SSOO much, just being together, and not at the hospital. THANK YOU LORD!!!!!!
We went to clinic on Tuesday. Madison got labs 9:00 a.m., then @ 9:40 she had to see Dr. Steiner(surgeon) to get her drainage tube removed. It was put in during her operation to get her new line put in. It drained any puss from the old lines site to keep it from getting infected again. They removed it real easy in the exam room. We then went back to clinic, and Madison received her IVIG(immunoglobe, to help rebuild immune system). This took a few hors. we finished around 2:00 but had to wait toll 3:00 to see Dr. Rozans. I took madison down stairs to get something to eat. We went back up to thw 5th floor to eat, so she could eat w/out being exposed to any germs/viruses. Shortly after we ate, Dr. Rozans came in. She was very pleased w/ Madison. She is eating well, no more diarehha(?), no more vomiting, color is good, she's just doing great!!!! So we got the OK to go HOME!!!!!! I had already packed our stuff at the room. I needed to wash a load of clothes, and that's it. I had cleaned it already. I washed all the linen already. I wanted to leave it clean like I recieved it. I washed the laundry, turned in the key, paid, and was on my way HOME!!! We got home about 9:00 p.m., but that was fine by me and Madison!! I can't say enough about Thr Ronald McDonald House. They only chare $10.00/day. They have all supplies you need to live(toiletries,towels,sheets,wash room.....) and people come and cook for you(volunteers) on certain days. It is a wonderful organazation. They usually have donation slots @ all McDonalds, and Iintend to donate alot more often than I did. It is truly for a great cause. It's a place for families to stay real cheap when their child is in the hospital. Or in our case when we needed a place to stay coming out of the hospital. I would encourage everyone to please donate. Well we are home, and I still have alot to do. I have been cleaning since I got home. I want my home to be very sterile so my baby can stay healthy and be home. We also met w/ the radiologist on tuesday. It was an introduction. We will be getting ready to start radiation
in a few weeks. I will keep everyone updated. I will try to write more later. My family is waiting...... Thank you to everyone for everything you have done for our family through this battle. It's not over, yet but it sure is nice to know people care and are praying. Thank you!!

Tuesday, March 9, 2004 9:00 AM CST

Day +25
Madison is doing well. Her new line got put in yesterday. She went into the OR about 7:30. We were back upstairs by 10:00. Everything went good. They took chest x-rays in Recovery afterwards. The line looked good and was in proper place. She didn't get the IV's out of her hand until 8:00 pm last night. We had to wait TOO long(in my opinion), but they finally were removed, and she stayed up until 12:30 am making up for lost play time. We cut her nails and painted them. We played w/ her dolls, and we GLUED stuff. I think she missed being able to glue stuff more than anything. She got up about 7:00 am, and now she is getting a little tired. She is laying down watching Thornberry's -- The Movie. She doesn't like to cut her nails, so I bribe her w/ nail polish. It works. Her blood pressure was good this morning. I don't have her counts for today, yet, but yesterdays were:
HCT--27.9 WBC--4.2 ANC--2142 PLT--77
She's still going strong. Her platelets are still rising on their own, and her blood(HCT) is doing the same. She did have to get a blood transfusion on Saturday, but that was the first in about 13 days!! No platelet transfusions in about 16 days!! This is SSSOOOO wonderful. Well thankfully, that's about all for today. Taylor had a GREAT weekend at Maw Maw and Paw Paw's house. We went to Grand Isle on Saturday and had his birthday party on Sunday. 8 yrs old already, WOW! We came up Sunday night and spent some time as a family, before Aaron left to go back home. OH!!--- She ate this weekend also. She ate about 4 bites of a cheeseburger and quite a bit of fries. She slept most of the day yesterday after surgery, but last night she ate the marshmellows out of her Lucky Charms. Every bit counts. Hopefully, it will only get better from here. GOD BLESS!!!

Friday, March 5, 2004 4:59 PM CST

Today was MUCH better. Madison was alot less swollen today. She peed quite alot last night. Dr. Rozans said that Madison had gotten alot of fluids to raise her blood pressure. Also that the reason Madison was so swollen is because she got so much fluid at one time it poured out of the vessels into her body and got reobsorbed by other organs. She got it all out today, though. She looked like Madison again. Her color was really good, too. Yesterday she was pale. She got up about 8:30 and was alot more cheerful and energetic. Even though she has IV's in both hands, she still wanted to do everything herself. The nurses give her different character bandaids when she allows them to take vitals, draw blood, take her bath, take her medicine, etc.. She still wanted to open and place her own bandaid wherever she wanted. She wanted to play with her baby dolls, and she did. The IV's didn't get in the way at all for her. Yesterday, she looked like a mummy. She kept her arms straight, even slept like that. she didn't run a fever. Her pressure is back to where it was. She has only had to take the Labetolol(blood pressure med) one time in 24 hours. She ate 1/2 a cup of ice chips!! Yes I said she ate SOMETHING!!!!! I was SSSOOOO happy. This is the 1st thing for me she has eaten in 2 weeks! She ate for her daddy last weekend(some bread soaked in milk). I left the hospital at 2:00pm to get Taylor off the bus by 4:00. After I got home I called the hospital and Aaron said she had eaten alot of McDonalds fries. That's her favorite. They said we could stop and get her a icee to drink, so Aaron knowing how much she loves them, stopped and got some Mcdonalds. Her ANC was over 11,000, her WBC is a little over 14, her HCT was 23. She should have gotten blood, but they were redoing chemistry labs when I left, because Madison's HCT dropped too much in one day. They looked at previous days and the way it has dropped, and yesterday was way off. They think it may have gotten false readings because it was diluted with all the fluids, so I haven't heard anything else yet. Her PLT went up to 69 on their own. Today makes,I think,9 days w/out blood and 10 days w/out platelet transfusions. Hopefully, all we have to do now is get the temporary line put in, and her to continue to eat, and maybe we will get to go home. Dr.Rozans took her off her Vacomyacin(antibiotic) today. She was also really pleased w/ Madison's recovery today. Her counts were great, and her body reacted the way it should have when she got the infection. Her WBC raised to fight the infection, and today it was back to a more normal rate. My little girl AMAZES me everyday. She fights right back. I felt much better leaving her to go home for Taylor's birthday party. Speaking of that, I need to go get started. God is Wonderful. God Bless

Thursday, March 4, 2004 1:32 PM CST

Day +20

Yesterday was a VERY eventful day. At 4:00 am, Madison had a temp of 104.6 . She really didn't sleep at all the night before, and while she was sleeping she wimpered alot. This was all very unusual, she had been doing alot better, and hadn't had fever for about 2 weeks. By 8:00 am the morning nurse(Kim) came in and told me they were ordering a chest/abdomen x-ray and an ultrasound. Madison's stomach was really the only thing bothering her, but Tuesday night we had to get multiple boulus'(quick dose of moraphine) for pain because she was waking up frequently complaining her stomach was hurting her. she also had some pain from some gas Tuesday night. The med worked for the gas, but she continued to be in pain all night w/ her stomach. They knew something was wrong, so they ordered the x-ray/ultrasound. Well shortly after 8:00 am, Madison sat up in the bed and put her hand to her chest, near her port, and kept saying it hurts. I picked up her shirt, and it was a little red. i touched it, and i could feel that it was swollen. I immediately brought it to the nurses attention. She stopped all the pumps, and called the Dr. He(resident) came and looked at it, and we all knew her line was infected. I gave her a bath the night before and it did't look like that. They contacted Dr. Rozans, but she was at a meeting at another hospital. They were instructed by her to start antibiotics. They didn't think initially that the port was damaged, but just that there was an infection in the line itself. They were able to get blood return from the blue line, but not the red one. They felt if the line wasn't working properly then the blood wouldn't have come out. Well, about 11:30 am Dr. Rozans came in to evaluate her, and after looking at it herself, she felt there was an infection in the tunnel that the line was initially inserted in before it leads to the vein. So, that being the case we needed to remove the line, because the antibiotics would not reach to the tunnel, only any of the line inserted in the vein. Surgery came up an evaluated her, and said it needed to come out also. They had a few kids ahead of Madison, but they said it would have to come out today, and her condition put her next in line for surgery. At about 4:30 pm, Dr. Rozans came in and informed me Madison's blood pressure was too low for her to go under anestesia, so they would have to come in and remove the line at bed side. That freaked me out. Nothing like this has ever happened, and I was worried how Madison would do. I knew she would have to remain very still, and that is kinda hard for a 3 year old to do. She also would not be able to have a new line put in until they cleared the infection. So about 5:30 pm they came up to remove it. The only thing they gave her was lanocaine to numb the outside area. They put her on a back board and strapped her down. It was hard to see her like that, but I was glad they used it. He numbed the outside and prepped and sterlized it. She screamed when they put the lanocaine, and they waited a few minutes until it was numb. He then cut the stitches, and pulled. The line broke the first time, so he grabbed it again and pulled and it came out. That was sheer HELL!!! I stood there and held her head and rubbed it and tried to calm her the best I could. I was crying, the surgeon asked me if I was going to pass out. I told him to do what he had to, and I would just concentrate on Madison. After they got it out, he squeezed it to remove any puss, but there was none. He said that was a good sign, meaning we caught it right away. There was bacteria that showed up in her blood cultures, so now she has to stay on antibiotics for a few days, and on Monday if her blood pressure is more stable, they will put in a temporary line. Currently she has two IV lines, one in each of her hands. She does not like that at all. She can't do anything w/ her hands. All she does now is lay in bed and watch TV. I pray pray pray that all will be well enough on Monday, so she will get her new line. She was very angry and upset w/ me yesterday. She didn't even want me sitting on her bed. Her hands are a little sore today, so she is a little fussy about that, but she is speaking to me again. They have to stick her to draw blood at 5:00 am, and she really doesn't like that either. I am suppose to leave tommorow for Taylor's Birthday party. I hate leaving knowing how uncomfortable she is. I hate having to choose between my kids. It's so unfair. She is resting right now. They uped her moraphine, to keep her from being in too much discomfort. She is very swollen today. I hope she doesn't swell anymore, I think her eyes will swell shut if she does. Well, that's how our few days have been, not very nice. I am praying she will get over this, and we will get to go home soon. Tommorow it will be 4 weeks we have been here, UGH!!!! Please keep her in your prayers, GOD BLESS!

Tuesday, March 2, 2004 10:10 AM CST

Day +18

Sorry , it has been awhile since I updated on Madison. She is doing well. We still haven't gotten her to eat much, so that is pretty much all we are waiting for. Her dad came up over the weekend, and I went home to be w/ Taylor. Aaron(dad) got Madi to eat 3 pieces of bread soaked in milk and she is drinking watered down apple juice. They took her off the labetalol liquid. She would throw up not long after taking it. I told them I thought it was the flavoring(pink) they were putting in it. Now we get the pill crushed up, I put it in a syringe and mix it w/ some apple juice and so far she is tolerating it well. She hasn't thrown it up yet. I am glad they FINALLY listened to me. I have been telling the nurses/doctors this since her birthday. That was the first day they started her back on the labetelol and that was the first day in a while that she threw up. Mom's got it under control now. THANK GOD It's hard to get them to listen, but like I told them, I have been here w/ her everyday for almost 4 weeks now, I know every med they give her, when they give it, and how it effects her. Who better to know her than I? We don't get the same nurse everyday. I think her stomach might start to do better now, hopefully. I met w/ the kidney doctors today. They also feel later after she recovers from the transplant and radiation her blood pressure problems would be solved by removing the right kidney. They also said they feel that her kidney never was funtioning at the right capacity at all. The Renal Lasix test done pre transplant showed problems w/ the arteries and they feel, and there really is no real way of knowing now, that she had this problem before, it just wasn't noticed until her diagnosis with Neuroblastoma. She is up and walking good now. Her dad got her muscles built back up over the weekend. They let her go out and walk the halls on the Bone Marrow Unit. She is doing well on that aspect now. She stays awake longer. She is only on 0.2 cc of moraphine, so two more days and she will be completely off. She doesn't seem to be having any pain issues. Her stomach does bother her at times, but I rub it or she lays down and relaxes and that seems to help. We will be staying at the Ronald when we get discharged. Thank god for that, it is alot cheaper than a motel(we definately can't afford). She is suppose to start radiation therapy after day +30. Dr. Rozans said she will have scans done prior, so I will be anxiously awaiting that day. Please continue to pray for her. We still have a long road ahead, but hopefully it is the road to recovery. Aaron's birthday was yesterday, and we got to spend some time together. He was where he wanted to be, he said, here with Madison. Taylor will be turning 8 on Monday, so I will go home on Friday and get everything prepared for his party. We will be having it at Maw Maw Crystal's so we can have family and friends around to make it special for him. He is doing okay w/ the situation, but he does miss his sister, alot. I have tried going home to spend some special time just w/ him, to let him know I love him, and miss him, and he is important to me too. Hopefully we will be home soon enough, and we can all be together. Madison continues to get a few cards everyday, and she fills w/ joy opening them. I am having problems down loading her pictures onto the website, but I will keep trying. Thank you all for continuing to check up, write, and pray for my precious baby. The power of prayer is felt deeply, and I pray god will continue to lay his grace on her and pull her through this. Her counts today are:
WBC 5.7 HCT 28.5 PLT 76 ANC ?(haven't gotten back yet, but still good) She hasn't had a blood transfusion in 8 days now, and no platelet transfusion for 9 days now. YEAH!!!!!! She continues to make her own platelets, they continue to rise. Her HCT(blood) has fallen, but she doesn't get transfused until it falls to 25. It seems to fall some, and then it starts to go up a little on it's own, so she is doing remarkably well on that aspect. I try to get her to eat, and will continue to try. She will, when the time is right. Until then we will be here, and I know this is a good place to be until all is right, because she can be monitored. Well until tommorow........... GOD BLESS!!!

Thursday, February 26, 2004 10:25 PM CST

Day +13

Today was Madison's 3rd birthday, and it was pretty good for being in the hospital. Her dad, brother, Aunt Tasha, and Maw Maw Crystal came to see her and brought presents. We got 23 cards so far this week!!! That is awesome. THANK-YOU all so much. Madison loves them all!! She got quite a bit of presents. Angel Jodi sent her a wonderful package with all kinds of birthday things, and she really enjoyed them. We got a call from Carol, Grammy Helen, and Nana and Grandpa. She was in good spirits most of the day. She didn't eat any cake and we couldn't light any candles because of the oxygen, but she relly did enjoy it and she got a wonderful cake from the child life ladies, they are so wonderful. Dr. Rozans came and brought her a present, and she really liked that. She did wind up throwing up, and there was a little blood, but it was dark so they said it was probably old blood from the mucusitis. I think she just had alot of excitement, and her stomach is about the only thing still left to heal. They are slowly taking her off the moraphine, currently she is on 0.4cc, and they are taking 0.1cc per day. They do give her a bowlus, if needed. (this is a small quick dose in IV) She is still itching a little, but her rash is going away. They started her back on the labetelol(blood pressure med) today. This is the med she was on before transplant. She has been taken off all other meds except for the blood pressure, itching med, moraphine, and a med used to coat her stomach to keep her from getting sick. they did give her the Phentergine and Benedryl for nausea when she throws up. Her counts today were: WBC--13.4 HCT--32.9 ANC--7102 PLT--43. She is averaging a trensfusion for blood or platelets about every 3 days, which is good as we were told. Alot of kids following transplant get transfusions daily, so this means she is hold on to them well. Dr. Rozans said all we are really waiting on is for her to eat, and then we will get to be discharged. We will have to stay at Ronald McDonald House for a few days, since we live an 1 1/2 hrs from Tulane, so she can be monitored. She doesn't think it will be longer since she is doing so well on keeping her counts up. They discontinued her Neupogen(helps build up her WBC count) since her ANC got over 10,000 a couple of days ago. Madison is starting to drink a little each day, so Dr. Rozans thinks she will probably eat something soon. She thinks next week we will probably get discharged, but that all depends on Madison. This is such wonderful news. It's a lot earlier than we originally thought. She is such a fighter. The nurses tell me all the time how well Madison has done compared to alot of other kids. That's my Madi, such a wonderful, courageous child. I will try to get thank-you notes out to everyone who has so thoughfully sent her a card/money/gift/or note. I can't tell you how much joy this has brought to her, THANK-YOU ALL!!!! Well, Madison is fast asleep, after a very eventful day, and I think I shall join her. This will be a birthday I will always remember and I pray to god she will have many more to come.

Monday, February 23, 2004 10:36 AM CST

Day +10

Sorry I haven't updated more recently. I went home over the weekend to spend some time with my son Taylor. He is 7 and he has been missing us, so I went home to be with him. I came back on Sunday. Madison is a little more swollen than when I left. Her ALB is a little low on her chemistry. That is why, so they told me. I don't know alot about this, but I will find out more today. I know it is one thing they look at for liver function. I also know that it's not bad when it's low, but it is bad when it is high. Everything else has been normal. Her kidney function has remained normal the whole stay. That is good news to me. Her counts are really coming up. Yesterdays counts WBC--1.8 HCT--27.7 ANC--684 PLT--31
TODAY'S COUNTS
WBC--8.4 HCT--27.8 ANC--4592 PLT--22 WONDERFUL!!!!!
I was in shock to say the least when they came in with her counts today. Her mouth a little worse than when I left, but the Dr. said w/ her counts coming up, she will start to clear up. Her throat and chest areas don't bother her anymore, but her stomach is still hurting. I guess that means her mucusitis in her stomach to her throat is starting to improve. She has developed a rash, and were not quite sure what from. The first site of it was on Tuesdau of last week. It was a little red behind her knee, and a little on her lower stomach area. When I left on Friday it really hadn't gotten worse. Yesterday, when I saw her, it had gotten much worse. It is now raised off her skin, so you can feel it, not just see it. And it has spread. Yesterday they took her off 2 antibiotics, because it has been 48 hour w/out her running fever. She is still on one, but they are taking her off of it today. We will wait and see if this releaves some of the rash. If not, they will get the dermatologist to come take a look. They have been giving her benedryl to control the itching. They are getting a cortizone cream for me to start applying. All in all, she is doing fantastic. She is awake for longer periods of time, and seems to want to do more things. If her counts continue to rise like this, hopefully we will get to go home soon!!! It is only 3 more days till her 3rd birthday, and I hope she will continue to do well, so she will enjoy the day as much as we can make it joyful for her. All of her nurses are so wonderful. They have really been great to her as well as myself. They have tried to make this stay as pleasant as it could be, and they have done a terrific job. I will never forget this period, and as much as I dreeded it coming into it, it has turned out to be not all that bad. (Hopefully I won't have to eat my words.) Thank-you to those that have sent cards and money and wishful thoughts. And thank-you to everyone who continues to pray for Madison. Please don't forget to sign the guest book. I will try to post some newer pictures of Madison, through transplant. I am still learning with that part, but I have some, and I will work hard at posting them. Thank-you for following our story and Madison's fight to overcome this horrible disease. Til tommorow........

Friday, February 20, 2004 10:31 AM CST

Madison is doing better, today. We learned some great news, her counts are starting to come up. Her WBC is 0.4.
Her ANC is 80. She has still had to get platelets and blood transfusion often, but this is normal. The news about the counts is so great because it means her stems cells are starting to engraft, meaning her immune system is starting to slowly rebuild itself back up!! Thank you LORD!!! For people who don't know, white blood cells(WBC) are what help fight against infection, Absolute Neutrophil Count(ANC) shows your bodies ability to fight infections. We watch these numbers daily because these numbers tell us when her immune system is starting to build on its own. Just 2 days ago her WBC was 0.1 and her ANC was 0. Yesterday her WBC was 0.2 and her ANC was 30, so you can see, she is starting to recover, which is awesome news!!! Madison is such a fighter. She has done nothing but surprised doctors and amaze me everyday in this horrible fight, but she is a fighter. Her smile and her courage and the way she bounces back from everything is what has really gotten me through these very rough times. What I find amazing also, is that her WBC has never gotten to 0. And her ANC was only at 0 for 2 days. We were told it would probably remain at 0 for about a week. Also from the very beginning, on the day of transplant, Dr. Rozans told us Madison had a really good harvest(collection of stem cell pre transplant). They look at a cell call CD34. They need at least 2 to be able to have a transplant, 4 is good and 6 is really good. Madison had 17 in her stems cells, and she said she thinks Madison will engraft(hold the cells and start producing her own stem cells) more quicker than other children. This is definately quicker and we thank the lord. I tell you, when something like this happens to you, you feel betrayed by god, you question him. But I have learned for quite some time, the lord has been w/ us the whole time. And even though we have this struggle, we have had so many miracles along the way, and we are greatfully thankful. Madison is not in alot of pain. She does sleep alot, but she seems content, not hurting. I would rather see that anyday. She is starting to stay awake a little more each day, and she is doing more activities,crafts,watching tv, anything to keep her body strong, her bones and her muscles especially. Her mucositis is still bothering her from her throat to her stomach, mainly when she has to swallow something. Most of her meds are through IV now so, there is not alot of swallowing. I still do the mouth care w/ her and her mouth still looks realitively good. Her lips are still dry, but their not cracked and bleeding like they were. When we get up those are the 1st things i do, mouth care and lubricate her lips. She has been in the bed a few days, we have managed to get her out a few times, but I will bend her legs and message and stretch her as much as possible. She will let me do it a little at a time, until she wants to be left alone. The message part is welcome anytime. Madison's birthday(3) is next Thursday(26). I have been praying for a while now, all that I wish is that she is awake and maybe wanting to try some cake, or at least blow out the candles, and have some happiness on that day. Please help me pray for this. I hated knowing going into this, that she would be here for her birthday, but this is one I will never forget. I am praying this will be the most special one of all, and that this transplant means new life!! This is a very important time and only more time will tell if the transplant has worked. I plead that it will. All I can do is take it one day at a time and pray my baby continues to do well. madison continues to have fevers, but nothing is growing in the cultures, so their is no infection. This is wonderful also. Dr. Rozans also said she feels that Madison is recovering quickly also do to the right kidney NOT fuctioning correctly. This sounds funny, but what is happening is her left kidney is sorta in over time trying to do the work of the bad kidney. She seems to think is has made the chemo pass through her system quicker, causing less side effects. This is awesome, too. Preparing for transplant I was terrified this would cause problems, there is always a chance of organ failure. She is so wonderful. My life has changed a great deal since her diagnosis, but not all in a bad way. My eyes have been opened and I will never view life the same again. Everyday I find something to be thankful for, and lately there have been many things. Thank -you to everyone who continues to pray for us, we feel the power of prayer. Thank-you to everyone who has been sending cards and who keep us in your thoughts. May God Bless You All!!!

Tuesday, February 17, 2004 12:58 AM CST

Day 4

Well, it is all happening. Tranplant itself went by okay. It was scary. Madison had another scan at 8:00am for her kidneys again, then the actual transplant @ 11:00 am. She threw up the whole time. They said it was from the preservatives. It really does smell like creamed corn(yuck). Her face was white, her lips were blue. She sort of laid back on the bed and her eyes were open, but kinda rolling at times. It was so hard to see her go through all of that. She is on so many medications. On Sunday, she pucked up blood. That really really alarmed me. They started her on a moraphine pump, because they said she had mucocitis really bad in her stomach allthe way up to her throat. I have pushed the mouth care on her so much, she had no sores in her mouth, but they formed from the inside. They originally started moraphine just through her line. The first dose she got(2/15), she was itching alot. She never had this problem w/ moraphine before. They then put her on a pump so she could get small amounts 24 hrs a day. She was still having itching problems, so they first tried Zofran. Today they put her on Narcan. It is suppose to stop the itching. She is sleeping now, and doesn't seem to wake up alot to scratch anymore. Hopefully this will work. They had to put her on Phenegan to control the nausea, because the Zofran wasn't working. She hasn't eaten anything since Saturday. All she does is heave, and nothing comes out. She still drinks a little water sometimes. It burns her as it goes down. She is on the TPN so she hasn't lost any weight. She sleeps alot. I hate to see her in pain so I'd much rather watch her sleep peacefully. She is very cranky, today. One minute she wants me, the next minute she screams for me to get away. I know this is because of all the meds and everything else her body is going through. I have gotten to know another mother--Tanya--and her son Wyatt. They have been here since the beginning of January. He got to go home today!!! I am so happy for them, they had a long stay. I will miss her though. She pretty much talked to me, and informed me of their expierence. It was nice to talk to some one who has just gone through it. Wyatt has Medulloblastoma--brain cancer. He has had a rough treatment, but seems to have fought his way through it all. Please pray for him and his family. madison had a nose bleed yesterday, so she recieved platelets. as well as blood yesterday. This was the first transfusion for both. I'm sure we will have many more. She runs fever off and on, but it hasn't been real high. The tylenol works well and quickly for her. She has had a few cultures drawn, but all have been negative for any infections. Thank the Lord!! They had to take her off the Labetelol(blood pressure med) because she was having problems swalling due to the mucositis. They put her on Clonidine--it is a patch that only has to be changed every 7 days. Most of her meds are infused through her line now. She still has to take tylenol by mouth, collace also(laxative sorta), and a med called Carafate(coats her throat down to her stomach to stop the burning). She is currently taking Acyclvir(anti viral med), Phenegan(nausea), Benedryl(nausea), Moraphine(pain), Cloidine(blood pressure), Carafate(numbing med for mucositis), Diflucon(anti-fungal), Narcan(counteract the itching from moraphine), Gentimycin(antibiotic), Immunoglobin(helps bulid the immune system), Cefepime(antibiotic), Collace(stool softner), Tylenol(fever), and Zofran(nausea). Not to mention stuff to put on her lips, because they are dried and peeling, mouth care products(magic mouthwash, peridex or oral wound mix that has no alchol-so it won't burn, a certain soap to wash her with to keep bacteria off her skin, diaper rash cream and Nystatin. When she gets bathed, we have to use sterile water in two basins. One to wash, one to rinse. We have to use 4 washcloths to wash, 4 washcloths to rinse, only using them on different sections on her body, so we don't spread germs from one area to another. After, we lube her up w/Lubriderm to keep her skin hydrated. Hand sanitizer very often, because she can't go and wash her hands at the sink. She is bathed daily(not unusual), and her bedding must be changed at least once daily. It's alot of work, but it is all worth it. I will stand by her all the way. Her dad came up and stayed the weekend with her, and I went home to spend time with Taylor. I went this weekend, because I won't want to leave once she gets real bad off. They told me today is pretty much the start of whats to come. They said the next few weeks will get real bad. I am trying to remain strong, but I am so scared of the unknown. All I can do is take one day at a time, and remember why were doing this. Everything (toys,tables,bed,etc) are wiped down everyday with sterilizer. I hope everything turns out okay with her kidneys. We are watching the funtioning very carefully. Thank-you to everyone who has called, written, sent cards to the hospital, and continues to keep up with her treatment here. Please continue to keep us in your prayerr. I will try to update daily now, to keep everyone informed. God Bless Oh, don't forget to sign the guest book. thanks

****Some Friends and Family have thought of a wonderful idea. If anyone is interested--to make this as positive of an expierence, anyone wanting to send a card or a note or even a prayer, I have put the address to the hospital where we are currently admitted. Madison loves cards and mail. We would also like to ask, if you are able, to include $1.00 to help us with all the added expenses we are having to deal with. She will be in the hospital at least 4-6 weeks, then we have to stay here in new Orleans for at least a month, so she can come to clinic and be monitored. We live 1 1/2 hours from our treatment facility, so they want us to stay near the hospital because fever and infection are common, but if not treated timely, they could be deadly. Anyone wanting to help, can pass the address, the website, and Madison's story to anyone else that may want to help.(church, family,friends,etc.)
Please include Madison's name and room number to insure we receive it:

Madison Musyl
Room# 6222-BMTU 6 east
1430 Tulane Ave,
New Orleans, LA. 70112

Address will always appear on website

Thanks so much--and thank you Carol for coming up with such a terrific idea!!!

Thursday, February 12, 2004 11:10 AM CST

Day -1

Madison is sleeping now. The new nausea meds do that to her, but when she wakes up she normally eats well and has more energy. Her counts have dropped. She is now neutropenic. Her tongue is getting white. Dr. Rozans told us that normally happens before mucusitis. I hope she doesn't start getting the sores. I do all the mouth care, religiously. We had a priest come in today. That was nice. He prayed with me and told me he would keep her in his prayers. I really love Tulane. I am so glad we transferred. Everything has been much more positive here. Aaron (Madis dad) will be coming up tommorow to spend the weekend with her. I will go home to spend some time with Taylor, my son. I miss him so much, both of them. I'm sure Madi does too. The test she had is called a Renal Lasix Test. They injected her with something(can't remember the name) and the kidneys absorb it. It sorta looks like an MIBG on the screen. It illuminates only the kidneys, though. One of her kidneys is larger than the other. We knew this already. The smaller one(damaged by the tumor) seems to not be funtioning to capacity. It was illuminated, but not as much as the larger one. The technician told me that was abnormal,but we knew it was. Dr. Rozans told us she adjusted the dosage of her meds to try not to further damage it. This makes me nervous, especially after the over dose of chemo she just had. I am praying all goes weel. The dr. said she will continue to monitor her kidneys. Tommorow is transplant day. Very scared and nervous abot that. She is running fever off and on. The last one she had was last night about 11:40 pm. so far today, no fever. She was started on an antibiotic yesterday called Cefepime. Hopefully that is helping the fever. They drew cultures and had urine tests. She is still using the potty a few times a day. She is still getting out the bed and playing. She loves music, so we play some and we dance a little. Trying to keep her up and moving. They told us they will start her on TPN tommorow after transplant. She is still eating a little, but they want her to get her nutrients. It will start with a low dose and when she gets to the point that she doesn't want to eat, they will increase the dose. Thank-you, to everyone who has signed the guestbook. I will try to get to your sites and read them, and also sign yours. Well, that's about it for now. Keep us in you prayers!!!

Thursday, February 12, 2004 11:10 AM CST

Wednesday, February 11, 2004 7:14 AM CST

Sorry I haven't written in a while. We are currently in the hospital for her stem cell trnsplant. We came in on Friday(6). We have been a little busy trying to learn where everything is and how things work up here on the bone marrow unit. On Friday Madison had an MIBG. It was negative, showing no uptake. This is wonderful news. Going into transplant everything looks good so far. I have to use the bathroom down the hall, and shower on the 3rd floor, because they don't have a bathroom in her room. I was kinda nervous about this at first, but Madi seems to be doing okay now with it. The nurses are wonderful here. So far our favorites have been Theresa and Liz. I'm sure we haven't met them all yet, though. Madison is doing ok being in isolation. She gets a little bored sometimes(understandingly). I try to keep her busy. Dara from childlife made her a sticker chart and everyday she comes in at the end of the day to let Madi pick a prize from a prize bag. She really likes that. Today we are suppose to get another test for her kidneys. It's one we haven't had before. One of her kidneys is larger than the other one. They think it is from where the tumor was. She is still having high blood pressure, though. So we will see. Praying all is well. We had a GFR prior to admission for transplant. It tests the functions of the kidneys to make sure they are functioning correctly. It came out good, so we will see. Yesterday morning Madi vomitted as soon as she got up. I requested Zofran. Not long after, she wanted to eat her breakfast. She ate all her cheerios, and wanted no more. Not long after that she threw up again and before the nurse(Liz) could get in there, she threw up again, but alot more. They gave her promethazine. It knocked her out for about 4 hours, but when she got up she ate really good, and was in a good mood. She played on the floor with her toys for about 3 hours. The physical therapist comes in everyday, mainly to play with her and get her out the bed. I try to do that as well, while she is able to. They(PT) came and brought her a mat to put on the floor. We put a clean sheet down and let her have at it. She started complaining that her butt was hurting yesterday, too. We started putting cream, and it seems to work. Her temp was up a little this morning. Not high, just higher than normal. She finished all her chemo. The etoposide and carboplatnum last night, melphalan on Monday. Today is Day -2. She will get two days of rest, then on Friday she will get the stem cells. I am starting to get more nervous now. She is starting to get symptoms from the chemo, and I know it will get worse before it gets better. They started her on Acyclovir this morning. It is an anti-fungal. They started her on Diflucon on Saturday. This is to help with baceria and prevent infections. They also started her on immunoglobin(yesterday), this helps the immune system. She will only get that once a week until day 100. Well, I guess that's about it for now. She is asleep now, so I thought I would take the time to update her site. Anyone wanting to send anything for her, I added the info at the bottom. Don't forget to sign her guest book, and please keep her in your prayers.

Wednesday, January 21, 2004 1:00 PM CST

Madison is doing quite well, lately. her appetite continues to improve everyday. She is eating alot. We are suppose to do scans(CT/Bone) next Tuesday. We are also suppose to talk about the transplant. Her father and I are very nervous about this. She is so happy right now and seems so healthy, but we know we have to do the transplant. She will have a better chance at surviving. I am praying daily for a quick and total recovery. Please continue to pray for her. The lord is listening. He has given our family many miracles since this has all started. We are greatful. Her counts continue to rise. No more sores in her mouth. She does have a few bo-bos on her fingers? Don't know what exactly they are from. She chews her nails alot now. I think it may be ingrown nails. The Dr. gave us an antibiotic and it is clearing them up. We are just trying to enjoy all the time home right now. She is suppose to have her transplant the second week of Febuary. Please don't forget to sign her guest book. I'll write more when I have more info as to future treatments.

Sunday, January 11, 2004 1:29 PM CST

Well, we just came home from a 6 day hospital stay. Madison is doing okay. We were admitted through the emergency for fever-100.6 . She got mouth sores after this last(6) round if chemo. I hate that. She was in alot of pain so they gave her moraphine. She only had to stay on it 2 days. Her counts started coming up, so we just used the majic mouth wash. That numbs her mouth real well. Today her appetite has improved. She was only eating PB&J in the hospital. We were happy, as long as she was eating something. Her weight dropped a little, but not much. Thank God, cause she is skinny enough. We have an appointment Monday at clinic. She is having some problems with her blood pressure still. They are trying to find the solution witth meds. We are suppose to also meet w/ Dr. Rozans next week for our SCT meeting. She is probably going to start all of her pre-transplant tests also. Madison is doing okay. She is still in some discomfort do to the mouth sores, but they are going away. She is glad to be home. Write more soon......

Sunday, January 4, 2004 11:03 PM CST

It has been quite some time since i last wrote. Madison is doing well. We have gotten some excellent news. After her 5th round of chemo, she was suppose to have surgery. We pretty much had everything set up to go to New York. We did her CT scan, and we were told that it was showing no tumor at all. This was unbelievable. We had a meeting with the surgeon here at Tulane. he also told us there was nothing he could see to go in and take out. Our dr. told us they would have a tumor board meeting, and that they would discuss madison's case. We also had a bone scan done. It also came back good. The doctor told us after the meeting, that Madison was not going to have surgery, and that she really felt positive about Madison. She told us that she feels she will be cured. She also said she has never told that to a patient or the family of a patient of Neuroblastoma. That was awesome!!!! I cried, I couldn't believe it. Well, we went on to round 6. We have just been home almost a week. She is doing good. Her counts are low right now, so we are waiting and watching. They told us it would be about 3-6 weeks before transplant. I am so nervous about that. I am reading as much as I can, but I am so unprepared. I don't know what to really expect. We are suppose to have a meeting with the Dr. so that we can go over eeverything fully. Taylor goes back to school tommorow after a nice vacation. I am so glad we got to spend some time as a family. We really had a wonderful christmas. And I got to be home for new Years Day!!! Well, try to write more often.

Sunday, January 4, 2004 11:03 PM CST

Friday, November 14, 2003 7:58 PM CST

We went to clinic yesterday, and Madison's counts are low. Her ANC is zero. Her platelets are right at the point for an infusion. We had to go back in today for platelets. Her dad took her, because they told us to come in between 9:45 - 10:00. They were suppose to order them yesterday so that when we went in today they would be there and ready for infusion. Well, needless to say, they were not. She spent the whole day in a clinic room waiting. They checked her temp this morning and it was good. Well, they checked it again about 1:30, prior to her getting the platelets, and guess what? She had fever. They called the doctor, and she said to go ahead and give her tylenol. After her fever reduced, she then received the platelets. Well, do to the fever she was then admitted, and started antibiotics. That was all about 5:00 p.m. Aaron is at the hospital now, but I will be going tommorow to stay with her til she gets to come home. It takes 48 hours for the cultures to come back, then they will be able to see if there is an infection. If there is no infection, she will get to come home whenever she goes 24 hours with no fever after that. Hopefully there is no infection. This is pretty typical. She normally runs a fever 5-6 days after she completes her chemo. She hasn't had a culture come back with any sort of infection before, so hopefully it will be the same. Aaron said she will be getting blood tommorow also. Hopefully the platelet and blood transfusions build up her counts, so she can come home. We just came home from the hospital Tuesday, went to clinic Thursday, then again today, and now she is back in the hospital. I am praying all goes well.

Wednesday, November 12, 2003 4:57 PM CST

Sorry I haven't written in a while. Madison has been in the hospital for 15 days. We went in on October 28th for a fever. She was admitted at 2:30 a.m. and antibiotics soon started there after. Come to find out she had an infection in her blue line( in catheter). They told us she would have to stay for 7 days for the antibiotics. She was scheduled for her 4th round of chemo on the 30th of October, but it had to be delayed until all the antibiotics were administered. She also got an infection in her red line before the 7 days were up. They told us the antibiotics would clear up both lines. They did and we were able to start her 4th round of chemo on November 5th. She was scheduled to be discharged on November 8th. Well, as I'm sure you can tell from reading this, hardly nothing goes as planned. She contracted RSV while we were in the hospital and we were told on Friday the 7th. So we had to be transferred to the 5th floor, away from the other cancer patients, so they would not get it from her. I don't know for sure how she contracted this, but i was not a happy mother. We have to keep them so isolated at home from others. I wouldn't dare let anyone sick for sure around her, and it takes us going to the hospital for her to catch a virus. I have my beliefs as to how she got this, but don't know definitately. I told the doctors and the nurses how I felt. I think she may have contracted it from a nurse who is not usually on the 4th floor. She mentioned to us that she usually worked on the 3rd floor, and there were alot of babies sick w/ RSV and colds. That was on Tuesday. Then on Friday she has it??? I can't believe they take nurses from other floors, who are exposed to god knows what, to care for cancer patients. They know how impaired their immune system is. Well, she had to have 3 days of breathing treatments, in a little tent. She had to stay in there for 2 hours at a time, 3 times per day. That was not fun. She could barely sit up in it, it was so small. Try making a 2 yr old stay in something small like that for 2 hours. It's not easy. She made it through it though. I am so proud of her. She is such a fighter. She just doesn't let any of this get her down. As soon as she would get out of the tent she would run all over the room. We couldn't leave the room either for 4 days. Her father and I tried to keep her occupied, but she cried many times to go home. She had enough of this stay. Well, we finally got to go home on the 10th of November after her final breathing treatment. That was Monday, we have to go back to clinic tommorow. They said she will have this for awhile, so we still have to keep her isolated. I have been wearing a mask since this has started because I have a sore throat. The Dr. said that may be a sign of RSV also, so I didn't want to re-expose her, so I will wear it for now. I am looking into other hospitals in the area. I just don't feel she is being cared for like she should. I take so many precautions at home, and here, the place you would think would be the most sterilized, she contracts RSV. I love her and I want the very best I can get for her. Well, bye for now. Hopefully all goes well tomorrow.

Wednesday, October 22, 2003 1:29 PM CDT

Our Journey with Neuroblastoma began August 2003. Madison had gotten sick. She was throwing up all night, so I called her family doctor and made an appointment for the next day. When we went in for her appointment, they decided to admit her for dehydration into the hospital. There they did blood work and x-rays. They determined Madison had touch of Phnemona. We stayed 3 days and 2 nights (over the weekend) and they let her go home. While she had gotten sick, she had a mass show up on her back and another on her neck(front). They scheduled us for a check-up four days later. Her doctor ordered an ultrasound to be taken of her back. We went to the hospital. All along I was thinking it was just a built up fluid and it would go away. (The reason this was in my mind is because when Madison was 1 she had a cyst show up and the opposite side of her back, we had ulrasounds done and they told us it was a build up of fluids and it would go away, and it did) Well this visit was different. The technician started doing the ultrasound on her back, she then stopped and went and got another technician. They started going all over madison's back. They also went along her side and started to go along the front taking pictures the whole time. That technician then went and got another person, come to find out was a radiologist. She also started scanning all over her back, side, and stomach. After we finished with that they took her over to have x-rays done of her chest. They did front and side views. All this time I was thinking everything was okay. They didn't seem alarmed or anything. They told me they had to get some one to come in and help them take the pictures for the ulrasound. After we finished I left and went home. It took us about 25 minutes to get home. When I got there, there was a message on my answer machine for me to call the doctor's office. I returned the call. They told me the doctor neede to see me as soon as possible to discuss her results of the ultrasound. my heart jumped into my throat. I knew with them calling me that immediately after leaving the hospital, something was terribly wrong. This was about 3:30. I had to get my son, Taylor, off the buss at 4:00. I also had to be at work at 5:00. I told them this and the receptionist said to get there as soon as I could. My boyfriend made it home from work after I got home, so he got my son off the bus, and kept our daughter at home and I went straight to the doctor's office. I was totally freaking. i didn't know what it could possibly be. my daughter was always a pretty healthy child, except for a few colds and ear infections. When I got there the receptionist took me straight to the back. I was already crying. I knew something awful was wrong. The nurse practioner came in to consol me while I waited for the doctor. I just kept asking him what was wrong with my baby. The only thing he would say is that Madison is very sick. Your going to have to go to another hospital tonight. I started balling. Finally, the doctor came in. He told me they had found a tumor. He said he thinks that it is cancer and I would have to go Children's Hospital of New Orleans right now. He had all of her records ready, and asked me if there was someone I could call to come get me. No, I said. I was histerical. I couldn't believe what he was telling me. My 2 year old baby had cancer. How could this be?? Some how I made it home. I told her father, and he began to cry. The first thing I did was grab my baby and hold her as tight as I could. My son was home, and didn't know what was going on. i called my stepmother, Crystal, and she came and got Taylor. We packed a few things and left for the hospital. We live 1 1/2 hours from New Orleans Children's Hospital. It was the longest trip of my life. When we got there, we went through the emergency room. They were expecting us. that night she got a numerous amount of test, including a cat scan. A few hours after, the ER doctor came in and informed us it was cancer, and that the pediatric oncologist were on their way to the hospital. They came in and talked to us, but I was still so confused. How did we not know? How did this happen to my baby. We were admitted to the hospital. We got up to the room about 2:00 in the morning. They told us she would be going in for surgury, that morning, to find out more. I didn't sleep at all. I stayed up looking at my baby, crying, and wondering why and how. She went in to surgery about 11:00 that day. We waited restlessly in the waiting room. After surgery was done they came and got us. We went in the back while madison was being awakend. We then went back to her room. About an hour after that, the social worker came in and a nurse. She said the nurse would sit with madison, while we went to talk with the doctor. Everything moved so quickly after that. We were told they only had to do a bone marrow aspirate, instead of a biopsy. They told us she had Neuroblastoma stage 4. This is the worst stage. It had begun in her adrenal gland, which is right by her kindey, but it had also spread. It was in her bones, bone marrow, and abdomen area(around in her ribs). I was screaming, I couldn't beleive this. They then told us she only has a 40-45% chance at beating this. I couldn't believe it. She had no symptoms. Nothing. We where then asked about putting Madison on a clinical trial. We were asked to sign consent forms for treatment. We were told all the details. We signed, because they also told us if she didn't get treatment, she would die. The following day they started her on her first round of chemo. Madison is currently finished her third round of chemo. She will have 5 rounds, then surgury to remove the mass tumor, then one more round of chemo. After that she will have a stem cell transplant and radiation. The future is so unsure. She is such a happy little girl, she never gets down. She keeps me strong with her courage and her love.

Saturday, October 18, 2003 7:25 PM CDT

This is our first journal entry. Madison is a loving 2 1/2 year old. She was recently diagnosed with Neuroblastoma stage 4. I will write more later, but I wanted to get her story started.

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