Gina,
Too funny. I was just thinking after I sent out my reply that I should just do a recap for you, but I had to get my kids off the bus! Anyway here I am and here we go.
I had/have a wonderful family. I loved my boys of which I have 3 in all. Our story of ald starts in summer of 2002 when my middle son Gabriel was having recurring bouts of dehydration and lethargy. He had been sent to the hospital for fluids, er visits , etc. Upon coming in again they decided to admit him and do some testing. The doctors noticed right away how dark skinned he was. They suggested Addisons disease but the test took about 5 days to complete and they kept him in the hospital then. He was finally diagnosised with Addisons. At that time Bradley had only been to visit him at the hospital once because he was in school and had been sick as well. Therefore the doctors never saw Bradley, but they never asked about our other children either,or even suggested something as unknown and horrible as ald.
Fast forward to fall 2002 Bradley started having behavior issues. He was a fabulous kid. He was high energy, loved to do sports loved the acheive. Always striving the be the best at everything. He was just born that way! I tell you the truth. He walked at 8 months old because HE wanted to. He loved sports and I have no doubt that if we lived in CA,him and Evan would of been buddies from all the sports they did together! He taught himself to rollerblade at 4 and would play in hockey in the streets with kids twice his age. He also "conquered" riding his 2 wheel bike at age 4 w/out training wheels. His life was like this. He had to be the best, he was as my husband says "driven". He wanted to start snowboarding, but never got the chance. During fall 2002 we had many test done, psychological, hearing, etc. He was doing some weird stuff that our doc couldnt explain and scheduled us to see a neurologist and eye doctor. We went to the eye doctor in Feb 2003 and she said "I dont know why but your son cant see, his eyes are fine you need an MRI right now". We left there scared to death and went to the hospital for an MRI.
I remember thinking as we sat there, this is a waste of time, here is my beautiful son sitting right here with me and we are laughing and playing while we wait, this is going to be nothing. WRONG. Several days later on Feb 14 Valentines day of all days (Bradley turned 9 on the 13th) we were in the neurologist office hearing him tell us that Bradley had ald and would probably die, and that Gabriel also had ald, and that Devan had a 50% chance of having it also. There was no cure. Devastation, upon devastation.
I went home that day and we told our parents, I took Bradley to school as he did not want to miss his Valentine's party (It was his last)!
We eventually found MN university and flew there. Me, the boys (all 3) and my mother in law. My husband stayed back to keep working to keep our insurance. We went though what seemed like weeks of testing and finally had a conference with the docs and me. Just me alone. It was terrifying.
They told me that Gabe needed an immediate bmt, they Devan didnt have ald, and that Bradley should not have a bmt but they would do an experimental treatment. Although the bmt for Bradley was our choice. It was a horrible place to be, to have to make a decision for your son like that. The first of many.
We chose the transplant for Gabe, and the experimental treatmetn for Bradley. We couldnt imagine Bradley being unable to be Bradley, run, play, do sports, be his beautiful self so we had to try something. They started treatment in March 2003. Bradley on one floor, Gabe on another and Devan at RMH. We would rotate between me, my mother in law and my husband who drove up. It was terrible, as a mother I wanted to be with all of them and they all wanted me. Bradley immediately got hives, and very sick and bloated from the treatment. We noticed immediate deterioration in him, but still had a small candle of hope.
Gabriel started on the meds pre transplant and was ok. By the next week when radiation started he was deathly ill. He would go to radiation hungry in the am and wanting to eat something but by the time he got back he was too ill to eat and wouldnt want anything. It was like that cycle for days. It was the saddest thing to see this little 5 year old boy go limp in my arms because of the pre-meds and see the docs lay his little body of the floor to receive the radiation. Heartbreaking. Meanwhile Bradley was still in his room becoming more agitated as we tried to keep him comfortable and content.
My husband sat with him one night and he thought Bradley was asleep and whispered to him "Bradley I am proud to be your daddy". A few seconds later Bradley raised his head and said "Dad, I am proud to be your son". Its a priceless moment that my husband cherishes as I do too. I cry as I write it.
Finally Gabriel's transplant day arrived. Devan was a God send with his tissue matching as good as a twin they said!! I dont know but I know it was a God thing. On that day, I had all 3 of my boys in the hospital in seperate rooms, Devan was just 3 years old.
The transplant went good. We were sure both Bradley and Gabriel could beat ald. We were sure they would be the ones, the success story!!
Early on, Gabriel unknown to us was exposed to chicken pox at rmh. This might not seem like nothing but with zero immune system, we were worried. They gave him some meds and praise God he never developed it. He never had GVH because of his brothers good match. He still suffered mightly with sores in his esophagus and stomach due to the radiation, he had diarrhea constantly. He was so weak. He eventually got some infection in his lungs that gave him high temps, in and out of hospital, they biopsied but could never find out what it was, but after much medication he over came whatever it was. All along the way we had noticed he couldnt see things as usual. At first they told us it was due to the meds, but eventually we faced the fact that most his vision was lost during transplant. His transplant was considered successful.
Bradley on the other continued to decline. He gained 30lbs and was miserable. He became frustrated with life, he was angry, we did whatever we could to please him and keep him comfortable. They told us as first that the disease had been halted via MRI, but the very next month they told us it was active again. It was very visible to us in his school work, speech, and general attitude. There are truely no words to describe watching the one you love, your child, the one you carried in your belly for 9 months of anticipation, deteriorate before your eyes! Pain, pain, pain. All my dreams laid down, all my dreams crushed for my sons.
Eventually we went home to IN. It was a bittersweet homecoming. We were glad to be at home again but we knew we were coming home for Bradley to die, and with unknown obstacles for Gabriel.
We came home in July 2003. At first Bradley stayed about the same as he had been in MN.
My other two sons had learned to play together very well as much of my time was devoted to Bradley. His school friends visited and we all talked of his return to school when God healed him. Knowing it wasnt going to happen but hoping! We did physical therapy and occupational therapy for the boys. We tried to keep Bradley as mobile as possible. They were granted a make a wish, but I just couldnt, couldnt do it. I couldnt celebrate in the midst of all this pain.
We did local things for Bradley to enjoy while he could and he did get a local "wish". It was like Christmas in September. He asked for a bunk bed and got it along with lots of toys and many gifts for the other boys as well. It was very generous and made our day.
In November he really took a turn, I remember Gabe having his birthday and getting one of those powerwheels jeeps. Bradley would run and chase Gabe and Devan on it, holding the back. He would fall down some and had trouble seeing them, he was drooling very badly. He began to fall alot.
Christmas came and we had a 48 hour prayer vigil with thousands of people praying. He continued to worsen. He couldnt support his own weight which was back down to his normal 70lbs. His little hands were turned in and he couldnt hold anything. (even now when I see a child with their hands like that, it twist my heart!), he had trouble swallowing food.
My son couldnt see, walk, talk , or do anything for himself. He was wearing diapers, I was taking care of him day and night, it was literally killing me emotionally. I didnt know how much more I could take. My husband unknown to me was planning on killing himself. I generally cried myself to sleep, and was just in a state. I didnt want to get out of bed, but had no choice, my son needed me. Sleep was my only escape from hell.
One thing, Bradley was still able to hear (a miracle). He would listen to his favorite movies and laugh at the funny parts.
I was the only one Bradley wanted, not even his Nanny (gma) who had helped and who Bradley loved so much would do. I could still communicate with him, and I blended all his food. We were approaching a point where we would have to decide about a feeding tube. We had hospice coming. I prayed and prayed about the feeding tube. I didnt want him to lie in a bed for years on a feeding tube when he could go free with Jesus, but how could I NOT put him on one? How do you make these decisions for your CHILD???
It was 2 days later, he died and I never had to make that horrific decision. He died at home, on morphine, on Feb 27th 2004. His brothers and loved ones were present. I will NEVER forget it. I watched my baby take his first breathe and I watched him take his last! Its absolutely unbelieveable. I had whispered in his ear while he lay there unresponsive, that when the angels come for you son, go, go dont ever look back! He went.
About a hour before that happened, my son Gabriel who is legally blind walked into the living room where Bradley was laying on the couch and asked his dad, whose that man standing next to Bradley? We said, what man. He pointed and said that man right there next to Bradley! We couldnt see anyone, but I KNOW he was there. I share this to say, we dont understand, but God's plan is perfect. He NEVER makes mistakes, and Bradley was no mistake!
It has not been easy, I still have anger at God although I have worked through some with Christian counselors and friends. I still suffer from depression as does my husband, we feel we dont have a future. My husband has said many times the only reason he is here is for Gabriel and Devan. Bradleys death has changed us all. Devan is no longer the baby of the family, he is the big brother for his visually impaired older brother. We have drawn closer as a family and closer to God, but realistically we deal with this daily!
I hope this wasnt too long, but thats it in a nut shell, that's not nearly the day to day as you must now know. I feel that talking to other ald moms is somehow a healing on a wound that will never heal. I wish ald on no one and want to offer any support, help, or a listening ear. Sending all hope and love to you Gina and family.
Christie Smith (written October 31, 2007)
