Madison's Web Site

Welcome to Madison's Web Page. Madison was diagnosed with stage 4 Neuroblastoma August 21, 2003. She was 2 years old at the time. She was entered on clinical trial A-3973 the next day consisting of 6 rounds of chemo followed by a stem cell transplant(2/04). After that time she was declared No Evidence of Disease and put on Accutane. On her 4th round of Accutane she started limping, and CT showed relapse in both her hip bones and left femur. She then went on to complete 6 rounds of chemo, 3 ICE, and 4 Cytoxan/Topotecan alternating each round. After that our battle for treatment of this monster led us to Memorial Sloann Kettering Cancer Center in New York City. She did one round of Irrinotecan/Vincristine/Cyclosphomide at our home hospital, Tulane University Hospital in New Orleans, LA to prepare for New York. She has currently done 4 rounds of chemo, and has had 2 surgeries to prepare her for another trial, 3f8 antibodies, that is only available here. She has completed 18 rounds of chemo, and numerous other obsticles, and by the grace of God, is still continueing her fight. That is where our journal picks up.......

Journal

Thursday, February 9, 2006 8:51 AM CST

Sorry for the long delay, but I haven't felt like getting on the computer too much. I've had to endure Thanksgiving, Christmas, Halloween, New years, and next (2/26/01) Madison's Birthday, all within 4 months of her death. It has been HELL!! I haven't been feeling up to talking or writing, so I just have been STILL trying to deal with my baby's death. We are in Louisiana, at home. It feels so empty and quiet, especially when Aaron's at work, and Taylor at school. I thought I wanted to go back to work, but I hate having to explain why I haven't worked in 2 years, and I wind up breaking down crying. Lately, I have really been trying to avoid people, just so I don't have to talk about it. I'm sorry, I am just trying to still deal w/ the reality of my life, and facing each day without my baby. My life was taking care of her, and all that was invovled w/ that, hospital appointments, etc..., and now, she's gone. Madison's Birthday is on the 26th of this month, and I have really had a hard time lately. Taylor has been having alot of bad dreams lately, all of them having to do with Madison and death. I can only imagine the thoughts in his head. He was 7 when she was diagnosed, and all along he asked if she was going to die. I never lied to him, because as much as I wanted to hold on to hope, I knew this could happen. I just told him that the doctor's and us are doing everything we can to give her medicine to make her better. My heart aches for him, he has had to see and endure too much pain, suffering, and death in his very young life. I have pictures up of her everywhere. Her beautiful smile radiating in every one. I know she was happy, I have only found a very few pictures of her not smiling. The only thing I can do in her room is, lay on her bed and cry. I don't know if I will ever be able to pack her things up. It is one of the last things I have left of her.
Aaron has pretty much been feeling the same as me. It's so hard to go throughout the day without seeing something, or thinking of something that reminds us of her. Even for the short time we had with her, we do feel extremely blessed to have her as a daughter, but I wanted her to be healed here, and stay here with us. I wanted her to get to go to school, something she looked so forward to. I wanted her to come home and see her dog, that she talked about so much at the end. And most of all I wish she didn't have so much pain and that we didn't realize that it was the end, until that day she died. I haven't written alot about Madison's last days, but they were very difficult. The bravery, and happiness, she did what we asked of her, never complaining. And in the end she was in alot of pain, and I am so sorry for that. Through it all she had never had pain like this, and I am so sorry she had to at the end. I just don't know how to go on from here. I thank God for Taylor everyday, because I don't think I would even get out of bed in the morning if I didn't know I have to pull myself together for him. I just haven't felt like company. I feel guilty, and know people are reaching out, but I need time right now. Thank-you all for continuing to keep our family in your thoughts and prayers. I check on all our friends still in New York, and Juliett here, often. You all are still very much in our hearts, thoughts, and prayers. I'll try to update more later, God Bless!

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E-mail Author: tmusyl@yahoo.com

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