Ryan's Story
Update of 6-24-2004:
Hi everyone.
I've been told I need to do an update, so here goes.
Ryan began what will hopefully be his last round of chemo this week (Tues. - Sat.). The first day was in Boston at the Jimmy Fund Clinic but the rest we can do at home with the visiting nurse. He's been doing fine with it so far - no nausea, etc.
On Monday, Paul and I will bring him in to Children's Hosp. and meet with the radiology people to talk about his radiation therapy. He'll have localized radiation in the area of the main tumor which was removed in April. This will occur before his first stem cell transplant. Later, when he has his 2nd stem cell transplant, he'll have total body radiation. We'll find out more about that too on Monday. The total body and, if I'm not mistaken, the localized radiation will both be done at Brigham and Women's Hospital. Children's (thankfully) doesn't have enough need for the type of equipment and staff required for this type of radiation therapy. But Brigham is only across the street - even connected to Children's by a pedestrian bridge so it's not any more out of our way.
We have no definate date for his first stem cell transplant yet. Probably 3rd or 4th week in July though. Prior to that he'll have another MIBG bone scan to see if these 2 rounds of chemo have done the job and cleaned up the residual disease in his pelvis and long bones.
Otherwise, he has good energy, is eating well and even gained back one of the 4 pounds he lost after surgery. We're trying to fatten him up before transplant since we're told that due to the side effects of the high dose chemo he'll get the first week, he won't be eating much if at all. They may need to put him on IV nutrution at some point during our tranplant stay. So, the plumper he is beforehand, the better. Good thing it's ice cream season!
As always, thank-you so much for all your prayers for Ryan. And please, if you would, remember also our little friend Sean Langley who relapsed recently.
Love,
Norma
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