Ryan's Story

Update of 11-9-2004:

Hi everyone,

We had our meeting with the doctors yesterday.

It was a good meeting and we felt better coming out of it than we did going in. The positives are: while that MIBG therapy didn't have the wider effect we wanted, it did clear a spot Ryan had in his thoracic area; if you look at his overall improvement since June when we decided to delay transplant and give him more chemo plus the MIBG therapy, there is appreciable reduction in his bone disease.

None of the treatments individually did that much, but cumulatively, they did so we're definitely better off than we were in June; the doctor with the most experience with MIBG therapy pointed out that it could still be working and if we did nothing for another month and then took another scan, it may very well show more improvement; there was no worsening of his disease; he has no symptoms and is feeling well.

As for what's next, they're recommending more chemo.

There are several drugs he's never had that show efficacy in treating neuroblasoma.

Ryan has for the most part tolerated chemo really well. They still believe it's not a good idea to go to transplant at this time. There's no way to know which drug or combination of drugs will work with Ryan so the decision process will involve other factors such as if he would take oral pills, do we want to be in-patient, do we want to be outpatient but have to go to clinic every day for a week, etc.

If we start one type and it's not working, we can switch to another. Because he's feeling so wel, has no symptoms, and his disease is stable, they don't feel any great urgency to start something new right away. We can go to Disney, enjoy Thanksgiving, and then go back at the end of Nov. to discuss which chemo path we'll take.

They also said that would give us ample time if we wanted to consult with Sloan Kettering again, which we'll probably do. They're approach is much more aggressive but we want to explore it again.

It appears we're just going to have to keep chipping away at this resistent boney disease. It's becoming apparent this will be a much longer haul than we had anticipated.

One of the main issues is not to do a treatment that will preclude him from receiving some other treatment if that particular one doesn't work (such as transplant).

So, while it's certainly not the optimal scenario, we're not feeling as discouraged as we were last week.

We hate to see him have to endure more treatments for an indefinate period, but Ryan is as tough as nails.

Thank you for all your prayers and encouragement.

Please pray that whatever comes next, side effects will be minimal but that the chemo, as Ryan puts it, "kicks the cancer's butt!"

Love,

Norma