Ryan's Story

Update of 9-06-2004:

Hi everyone,

As many of you already know, Ryan and I will be leaving for Philadelphia tomorrow morning for his treatment at Children's Hosp. of Philadelphia.

He had a slew of tests and scans done last week in preparation. The tests pretty much said that nothing has really changed since his last batch of tests in early July, but we weren't expecting much change anyway.

He had a CAT scan and PET scan which he'd never had before and did very well holding still without sedation.

The reason for going to Philadelphia is that his disease has become somewhat resistant to the chemo he's gotten thusfar and he still has residual disease in his bones. The treatment they do down there is not available (yet) here in Boston.

Here's an explanation of the treatment he'll be getting at CHOP.

It's called MIBG therapy.

MIBG is a substance that is taken up by neuroblasoma tumor cells. It is combined with radioactive iodine in a lab to form a compound.

The compound delivers radiation specifically to the NB cancer cells and causes them to die. It is administered through an IV.

In Ryan's case, they will do this procedure twice, two weeks apart. He'll be admitted tomorrow and his infusion will be on Wednesday.

The infusion itself takes about 2 hours. Since he'll be radioactive, he'll be in a lead-lined room with lead shields around his bed. He will not be able to leave his bed.

This will be until the radiation levels are low enough for him to be discharged, probably Sunday the 12th. I can stay in the room with him during this time and can touch him but not hug or hold him. :(

On the 13th he'll have a scan done and then we'll be able to come home.

The Jimmy Fund Clinic in Boston will monitor him and do some additional lab work while he's home.

Then on the 21st of Sept., we travel back to Philadelphia and do the same thing all over again, hopefully coming home on the 27th.

The major side effect from this treatment is low blood counts.

It is expected that Ryan will need to receive some of his stem cells in order for his counts to recover. They anticipate that this will be around Oct. 6th. It will be done here in Boston.

After he recovers from all this, he'll be re-evaluated to see where we go from there in his treatment.

Well, that's about it. Hope everyone has had a nice holiday weekend!

As always, thank-you for your prayers.

Love,

Norma