Ryan's Story
Update of 1-27-2005:
We finally got some test results from NY yesterday. Ryan's bone marrow biopsy was negative for Neuroblastoma. Since Sloan Kettering takes marrow samples from 4 sites - 2 in the front of the pelvis, 2 in the back - we take it as extra good news. Boston only does 2 sites and we've gotten mixed results in the past. His bone scan (MIBG) showed improvement too!! So it seems we're moving in the right direction. Right now we're making arrangements to have him admitted to Children's to begin the high dose chemo per the Sloan Kettering protocol. This is to suppress his immune system in order to receive the antibody therapy and also, hopefully, knock down more of the disease. We're glad we don't have to travel to NY for this part. For anyone curious about what this antibody therapy is about, I've attached a doc. from the MSKCC web site that answers some questions about it. This round of chemo is very high dose. Since his marrow is already pretty beat up by previous treatments, he may need an infusion of his stem cells. Fortunately, he's got plenty in the bank. It's a pretty sure thing that he'll also need multiple transfusions for red cells and platelets. I'm not sure of the timetable, but at some point they'll decide if he should get a second round of chemo or head to NY for the antibodies. He may not be able to tolerate a second, but if he can, they'll do it. This chemo is also likely to make him quite sick. He's been lucky in the past and not been sick except for the very first round he had last Jan. Hopeflully, his luck will hold. Once we do begin the antibody therapy, we'll be in NY 2 weeks at a time. It's a daily infusion (outpatient) M-F for 2 weeks, then 3 weeks off, then back for another 2 weeks, etc. Ideally, they want him to get at least 4 of these rounds. Right now Ryan is feeling great and even enjoyed our stay in NY at the Ronald McDonald House last week. They have a very well-equiped play room. He also made peace with his NY doctor, an avid Yankees fan. He and Ryan, the obvious Red Sox fan, agreed to disagree. Although Ryan ended the conversation by saying "but the Red Sox really are the best team." He had to get the last word!! As always, thank-you for your prayers. Please pray also that this chemo is "kinder and gentler" than expected. Love, Norma and Paul
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