Tears streamed down my face. Dear Lord, we begged for Your healing for Evan, why is this happening? All I could think was, why? All I wanted to do was sleep, wishing when I woke up, this nightmare would be over. We went back for his follow up appoinment, several family members went with us to hear the details of what was to happen next. The Dr. 's tried to explain things to us, we were hearing words we had never heard, terms that only a Dr. would understand. I remember sitting there, just crying, listening to our "options". They explained that with a bone marrow transplant, Evan would have the oppertunity at a "normal" life. Without it, he would recieve weekly enzyme treatments, the bad thing about the enzyme treatments is that they don't pass the blood brain barrier, therefore he would become mentally retarded fairly quickly, then as the brain shut down, so would the rest of the body. Average life span without BMT, around 13 years old. So, to us, there was no option, we would risk the bone marrow transplant. We all went for blood work that day to see if any of us would be a possible match for Evan. The best chance for a match would be one of his brothers, a 25% chance. Only a 1% chance for Anthony and I to match.
We were told about the reason this happened. Anthony and I are both carriers of this gene, therefore, each of our children had a 25% chance of being born with MPS, statistics were exactly right, 1 in 4. Evan started enzyme tratments the week after diagnosis while waiting for a match. These treatments were 4 hours long. He had to recieve an IV every week, with several sticks before getting a good vein. He usually slept through at least half of it, due to Benadryl and Tylenol as pre meds. We found out soon after that none of us were matches for him, he was put on The National Marrow Registry waiting list. They told us it usually takes two to three months to get a potential match.
In the meantime we decided to do a Bone Marrow drive in our town, knowing the chance of getting a match was slim to none, it made us all feel better just to be trying. What a blessing this was, seeing people coming in and signing up to be potential donors, if not for Evan, for someone else. There were people we didn't even know, people that just saw the sign and were touched to stop. It is truly amazing the good that comes out in people when you need them. The drive was a huge succes, bringing in around 250 people.
We were contacted by Children's about two months later, they told us they had not one, but three full matches for Evan! They would decide which one was the very best fit for him. And if something went wrong, we also had a backup. Evan's donor is a 21 year old male, that is all we were told. Wow, that is all I could think, this boy, just a young man, he is doing something that will bring him pain, to give our Evan life. Oh thank You Jesus for this man.
Evan was put through several tests to make sure he was stable enough to go through transplant, a CT scan of the brain, an echo and EKG of the heart, a Broncoscipy of the lungs, and numerous blood tests. He passed all of them with flying colors. We were more than pleased to find out that he had no damage from the MPS. Alot of kids are already having irreversible symptoms by this age, including hearing loss. We were told is was caught early enough. After they knew he was healthy, we met Evan's amazing Dr. She is a Hurler specialist, and is one of the top BMT Dr.'s in the world. We were very pleased to have her as Evan's primary Dr. The first thing she told us is she would give us the scary statistics only once, and unless any problems were to arise, everything from that moment on would be only positive talking. This is one of the things I have grown to love and respect her most for. We were told that there was a 10% chance of fatality due to the actual transplant process, when I thought of this I was filled with fear, one in 10 children, that sounded like way too big a risk. She said, let's say 100 out of 1,000, somehow, that did make me feel slightly more comfortable. I began to cry, telling her, I cannot lose my child, I can't live without him, her reply, if you don't do this, you will be living without him. We put him in the hands of our Lord that day, and signed the consent.
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