Prior to the actual transplant, the patients bone marrow is destroyed or suppressed using high-dose chemotherapy with or without radiation. This portion of treatment is called conditioning. The purpose of the high doses of chemotherapy and radiation is to kill most or all of the remaining cancer cells in the body and to make room in the bones for the new bone marrow or stem cells. For allogeneic transplants, the conditioning also suppresses the patients immunity in order to allow the donor marrow a better chance to grow.
Conditioning regimens vary according to institution and protocol, and also depend on the medical condition and history of the child. Typically, the chemotherapy is given for two to six days, and radiation (if part of conditioning) is given in multiple small doses over several days.
They got JaNette into her second remission in December, then gave her maintenance drugs to keep her there until they were ready to start transplant conditioning in April. So, unlike some of the other kids, she went to transplant healthy and strong. JaNette had 1,200 rads of total body radiation in five increments—two the first day, two the second day, and one the third day. Then she had two days of incredibly strong chemotherapy, one day of rest, then the transplant.
The transplant itself consists of simply infusing the stem cells through a central venous catheter, just like a blood transfusion. The marrow or stem cells travel through the blood vessels, eventually filling the empty marrow spaces in the bones. When the new marrow begins to produce healthy white cells, red cells, and platelets, this is called engraftment. This typically occurs from two to six weeks after transplantation but may vary according to the source and number of stem cells that are given. Complete recovery of all components of immune function can take from one to two years.
I couldn't believe how beautiful the bone marrow was—a bag of shimmering red liquid. It just glistened. It meant life.
My dad donated marrow for my transplant. He said he was sore and doing the "bone marrow hop," but he made it to my room that day to see his marrow transfused into me. I really felt different as I was getting the bone marrow, like I was getting so much more energy.
I cannot say enough good things about the transplant center. They were very family-oriented, allowed us in the room 24 hours a day. I was allowed to sleep in bed with her (I just told the nurses to make sure to poke her and not me). The nurses were wonderful, and I still think of them as family. We didn't get very close to the other families; we tended to stay in our own child's room. One day a family would be there, then the next day they would be gone. I got to the point where I just didn't want to know.
We were prepared to stay five months in or near the transplant center, but we went home after only two and a half. She had the normal nausea, so she was on TPN (total parenteral nutrition) from transplant May 5 until the end of June. Until she could take her medications by mouth, I did some IVs at home. She had her last platelet transfusion in July. It took until the following June for her counts to normalize and for her to start producing T cells. We feel lucky that things went so well.
Donor and patient confidentiality are closely guarded. The NMDP allows letter exchanges or meetings if both donor and recipient express a strong desire to do so, but only after a year has passed since the transplant.
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Although nobody gets a parenting manual or bible in the delivery room, it is our duty as parents to try to make our kids as well rounded, happy and confident as possible. It is a lot easier to bring up great kids than it is to try and fix problems caused by bad parenting, when our kids have become adults. Our children are all individuals - they are not our property but people in their own right.