Transplant

Evan recieved enzyme treatments throughout August and had his Central line placed on August 20th '09. He was put to sleep for this, he did really well. With Hurler babies, there is always a big risk with sedation, so they try to minimize the times they have to be. We had to spend the night in the hospital, this was our first stay. He was admitted on August 26th for the transplant process to begin.

The first four days he recieved chemo, the reason for the chemo is to knock out his immune system, if he has an immune system when he recieved his transplant, it would just kill the new cells. They told us the most likely side effects would be fever and vomitting, and he would probably slow down on eating. It was so hard to watch this beautiful baby, who was full of life, having to be completely broken down, just to be well. That first chemo shot was so hard on me to watch, knowing they were sending poison into his little body. I remember everything about that night, I sat in the rocking chair in room 507, rocking him as he felt the sting of the shot. The nurse was telling him how sorry she was, that she just hated to hurt him. He handled everything with a smile on his face, greeting each nurse with a smile, and blowing kisses as they left.

Evan has always been the happiest baby, so laid back. From what we have learned and wittnessed, all Hurler babies seem to be this way. The Dr.'s even told us, it is just their temperment. After staying a week inpatient, Evan was doing well enough that they allowed us to leave for seven days. We were to stay in the apartment we were renting in Crestview Hills, Ky. And he was only to be around Anthony, myself, and grandparents, as his counts were already falling. That week at the apartment was scary. It was just he and I because Anthony was in Versailles with the other boys who weren't aloud to be around him. He began getting sick every time he took a bottle, and didn't want to eat. We were readmitted that next week for more chemo, a stronger dose this time. He did pretty well, he was a little weak, but for the most part he seemed himself. He was able to start eating again, and he continued to play.

On September 18th '09 Evan recieved his new cells. They gave him pre meds in case of an allergic reaction, therefore he slept right through it. It was amazing just watching those bright red cells go in. Something that seems so simple, yet, it is so complex. The cells went in over about two hours. When he woke up he was pretty puffy from the volume of blood he recieved, it took a couple days for that to subside. We knew that after transplant was when all the real sickness began. We prayed that his wouldn't be too bad, but we knew God would see him through. About a week after transplant I believe, is when he got an NG tube placed in his nose for feeds. He was still eating a little bit at this point, but at around the two week post transplant point, they can develop something called Mucositis. This is really bad sores that start in your mouth, and go all through your GI tract. So, they want to place the tube without any sores. Evan actually did really well with the tube, he tried only one time to pull it out, from then on, he never even acted like he knew it was there. The NG tube ended up having to be advanced to an NJ, which goes on past the stomach into the small intestine, he was vomitting everything in his stomach up.

Shortly after transplant he started sounding funny when he cried, like he had a mouth full of cotton, they said this was the start of the Mucositis. He ended up getting it pretty bad, blisters all inside his mouth. He stopped all eating and drinking, and was put on a Morphine pain pump. He also had it all through his GI tract as well. He was placed on feeds and TPN and lipids for nutrition. He slept almost all the time, which was a blessing because if he was awake, he was in pain. The Mucositis lasted around two weeks.

Almost exactly two weeks after transplant Evan's hair started to fall out, it would be all over his face, on his pillow and clothes. When it starts doing this, the best thing to do is buzz it down. I couldn't help but cry as I ran the shaver over his beautiful white hair. Not because he would be bald, just because he looked, "sick". Of course I fell in love with that little bald head before the night was over. He was feeling quite a bit better at this point, we would sit together and watch movies and play. There were definately times of deep lonliness for me, I had never actually been alone before. Yes, Evan was there with me, but I was in another state, away from my husband, my other boys.

Evan's counts started to rise and they were watching for engraftment around 20 days post transplant. The first engraftment study they do, they always hope for a 100% engraftment, that would mean that all Evan's cells were gone, and he only had donor cells. We were so excited and nervous all at the same time to get the news! We found out around that day 20 mark that he was 100% donor!! He was able to be released from the hospital in early October to go to the apartment. We were then to start clinic appoinments three days a week, and home health care would start coming too. Evan was released on feeds and I had to learn how to do everything a nurse would do. That first night at the apartment was wonderful, life, a tiny bit back to normal.