SCT can take a heavy emotional toll on the child, the siblings, and the parents. It can be a physically and mentally grueling procedure, with the possibility of late effects. Most transplant team members are extensively trained to meet the needs of the child and family during the transplant itself and throughout the recovery period that follows. The team usually includes doctors, nurses, social workers, educators, nutritionists, child life specialists, and physical, occupational, and speech therapists.

Levi’s transplant experience was like watching someone wake up from a deep sleep. For two weeks he was flat on his back, suffering greatly from mucositis and a tummy bug that caused diarrhea for days straight. It was a real horror. Then one evening he sat up and said, “What’s all that stuff?” He was referring to all the gifts that had piled up in the corner of his room. He opened every toy, got down on the floor, and drew pictures of all the foods he was craving, and he never looked back. It was like an instant transformation. I think my own recovery was longer. I believe part of me froze in order to survive the transplant, and it took a long time to thaw.

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My teen-aged daughter struggled with anxiety throughout treatment. The things that helped us were a structured day (lights on at 8 a.m., wash, dress, eat, go for a walk or a wheelchair ride when she couldn’t walk), daily visits from the child life specialist, and help from nurses. The child life specialist stayed with us the entire first day of diagnosis, explaining things and helping us to stay calm. During my daughter’s hospitalizations and the transplant, the child life folks came every day to do crafts, art therapy, music therapy, walks, and visits to the teen room. We didn’t worry about school that year, just focused on staying calm and getting through it.

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What helped me the most were the decorations and having a positive attitude. My mom decorated the area outside the transplant room with balloons, cards, and posters. It was hard to take the medicine, so my mom made a huge poster to mark off how well I did. Every time I took my medicine, I got a sticker. When I got one hundred stickers, I got some roller blades.

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My son had standard risk B-cell ALL, diagnosed at age 8, and relapsed in his testicles, marrow, and CNS [central nervous system] after front-line treatment ended. He relapsed again in the CNS soon after he had completed his relapse therapy, at age 14. So, we were five years post diagnosis when he had a transplant using cells from his triplet sister who was a perfect match. He was in a new transplant wing at a big children’s hospital. Everyone who came in the room had to thoroughly wash their hands, and non-family members had to wear gowns and masks. The continuous pressure vent was right over where I slept, and it made enough noise that it drowned out the hospital noises. He was an angry teenager by then, so he basically slept, refused to eat, and yelled at the physical therapists every time they came in the room. He did, however, bond with the music therapist who taught him to play the ukulele.

Sometimes, unrelated donors wish to meet the child or teen who received their donated stem cells. This is usually allowed a year after transplant, and both parties must provide written consent before any information is exchanged. These reunions can be very emotional and in some cases life-long friendships are formed.

Austin’s bone marrow donor wanted to meet us after the year of waiting, and we wanted to meet him too. So, when we were in Philadelphia for a follow-up visit, he drove up. Austin hugged him and hugged him. Those two have become very close—two peas in a pod. Every time we come east now, Doug and his girlfriend drive to Philadelphia and spend a weekend with us doing fun things. We feel very fortunate and very blessed that things turned out the way they did.