Stem cell transplant can take a heavy emotional toll on the child, the parents, and the siblings. It can be a physically and mentally grueling procedure, with the possibility of months or years of after effects. Most transplant team members are trained extensively to meet the needs of the child and family during the transplant and long convalescence. The team includes physicians and nurses, psychiatrists, social workers, chaplains, educators, nutritionists, and child life therapists.
Christie had many painful complications after the unmatched allogeneic transplant. I remember lying next to her and saying, "Christie, if Mommy could take this away from you I would." She looked at me and said, "Mommy, I love you so much, I would never want you to go through this." But then she went on to say, "It's not so bad, I met a lot of people, we got to travel, Daddy didn't have to work, Danielle and Nicole got to spend time with Daddy." She just saw something positive in everything, even this terrible disease.
Christie was also very, very funny. She loved having me be the donor, and she started calling me her "blood sister." She kept saying, "Ma, when am I going to start being funny like you?" and I'd tell her that she was way beyond me. Her humor was contagious.
Leah was feeling good and was very healthy when she went into the laminar air flow room. We lived near the transplant center, and she had many visitors. I think the visits and the nonstop telephone conversations really kept her spirits up.
What helped me the most were the decorations and having a positive attitude. My mom decorated the area outside the LAF 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 100 stickers, I got some roller blades.
I felt great during the transplant and at the center, but when we came home it was very, very difficult. We had just moved before my daughter was transplanted, so we didn't have a good support system in place. She had been in the hospitaland the transplant center for almost a year, and then we had to stay at home for another year. For a few months she would spike a fever every time someone who was not in the family came in the house. So my young son could never have friends over. We just stayed home. It was very hard, and we all felt very isolated.
Often so much time and energy is focused on the child who needs the transplant that the needs of the siblings are overlooked. Siblings need careful preparation for what is about to occur, and all questions need to be answered and concerns addressed. If a sibling is the stem cell donor, parents need to assure the donor that the results of the transplant are out of everyone's control. That is, the sibling is not responsible for the patients life or death. Psychologic studies have shown that regardless of transplant outcome, the vast majority of donors feel that their donation was one of the best things they have ever done.
Organizations that can offer emotional support to families during the transplant are listed in Appendix C.
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