Ryan's Story
Update of 9-15-2004:
It's been quite a while since we updated. Mostly because there was not much to report.
After Ryan's second MIBG treatment in Philadelphia, he was monitored here in Boston. The treatment hit his bone marrow pretty hard, as expected.
As part of the protocol he received an infusion of his stem cells on Oct. 6th. While waiting for that to kick in he was receiving transfusions about twice a week. His counts have been holding steady for a little over a week now so his stem cells have obviously engrafted.
Last Thursday, Friday and yesterday he had his follow-up testing done to see if the Philadelphia treatment did the trick, namely to clear up the cancer still in his bones which had been resistent to the chemo.
The main scan for that is the MIBG scan which he had yesterday. The doctor called last night and said that unfortunately, there does not appear to be any significant improvement.
Needless to say, this was VERY disappointing news.
We felt so sure this treatment would work, but it didn't. So much for gut feelings. This however in no way means we're out of options.
The purpose was to put him in a better position for stem cell transplant. The doctors, including his Fellow, who follows him the most, plus 2 neuroblastoma Attendings plus the head of transplant, are all putting their heads together to come up with a recommendation for us.
We meet with them on Monday afternoon. We're also going to as k them to consult with Dr. Kushner at Sloan Kettering who we met with last summer. We'd like to know what his thoughts are.
On the lighter side, we met with 2 volunteers from Make-A-Wish yesterday.
Ryan's wish is to go to Disney World. If all goes smoothly, we may be able to go as early as next Thursday!!
In closing, we want to thank eveyone again for your continuing prayers for Ryan.
We seem to be at another crossroads. Please pray for guidance for both the doctors and us as we will be making some big decisions next week.
Love,
Norma
|
