12/02/2009
by Michael Wells Our visit to CHOP… Today Michael and I went to the CHOP (Children’s Hospital of Philadelphia) for a 2 hour consult with Dr. Bunin regarding a bone marrow transplant for Brady. Her recommendation is to continue with the second round of chemotherapy induction at BMSCH (Bristol Myers Squibb Children’s Hospital). While we wait for the chemotherapy process to do its job, she will begin a preliminary search for a possible bone marrow donor. She is also going to discuss Brady’s case with her team of seven transplant doctors at CHOP as well as Dr. Arcecie, a leading AML doctor at Johns Hopkins. Once Brady is well enough to travel to CHOP he will see Dr. Bunin and she will do a cheek swab to reconfirm the typing results done at BMSCH. At the end of December she would like Brady to have another bone marrow biopsy at BMCSH with the flow cytometry and scattergram lab test to determine the number of blasts present and a interphase fluorescent in situ hybridization (FISH) chromosome test to see if the inversion 16 chromosome is still present. This information will be sent to CHOP to confirm the results as it is critical to have an accurate count of the percentage of blasts present. If the blast count is zero or 1% then we will most likely NOT do a bone marrow transfer. If the count is 5% or greater then we will most likely do a transfer. The grey area, as there always is, is if the blasts come back at 2, 3, or 4%. If we decide to do a transplant the team of doctors would decide between a cord transfer or a donor transfer. With a cord transfer the recovery is slightly longer and there is no guarantee that the cord will have enough cells in it to enable a complete recovery. The good thing about cord transfers are that they are just sitting on a shelf waiting to be used, we can even reserve a matched one if one is available. Also, they do not have to be as well matched as a donor. For either one, the survival rate is 50-60%. The other risks are also the same. They range from organ failure to graft-versus-host disease. This disease is common and can be treated with medicine for a short period to several years. The symptoms range from a pinkish/red color skin to blisters that are like second degree burns inside and out of the body. The marrow procedure is broken up into three parts. The first is called conditioning. This takes about a week and consists of extremely high doses of chemotherapy to wipe out all of his bone marrow. This type of treatment causes many side effects: increased risk for infections, fevers, sterility, increased risk of creating secondary cancers, growth/neurological/developmental issues, cataracts, etc. Not to mention the usual things like vomiting, diarrhea, and severe diaper rashes. The doctor is going to try to avoid total body radiation because it has really bad side effects for children less than three years of age. We did not go into detail on this subject. The second phase is the transplant and in hospital recovery. We can expect Brady to be in the hospital for at least 6-8 weeks depending on if he is able to keep food down (they might have to give him a feeding tube), if he has no infections, if the bone marrow biopsy one month out determines that his body has not rejected the transplant, etc. If the marrow is rejected, which is very rare, the doctor said that Michael and I could be tested as an emergency back up plan. The third part is the at home recovery process which could be from 3-6 months. Basically it means keeping him away from people/germs/mold. He would also go for follow up visits once or twice a week during this time. Miscellaneous information: We’re scared! But my motto for life is: You do want ever you have to do, whenever it needs to get none whether you want to or not without hesitation or debate. It’s all so very complicated and will ultimately be quite simple. Please continue to keep Brady in your thoughts, prayers and hug someone you love! PS Brady had a simply wonderful day with his Grandparents. No fevers, diarrhea or vomiting and no more bleeding. Later tonight it’s 2 more rounds of chemo, YUK!!!“8 Years Later—Still No Cure for Pediatric Cancer” is a series of posts revisiting the journal kept by Sherrie and Michael Wells during the cancer diagnosis and treatment of their son, Brady Michael. Hopefully these entires will provide an understanding of the journey families face when dealing with these horrific diseases and of the important work the Hugs for Brady Foundation does.