Ryan's Story

Update of 12-1-2004:

Hi everyone,

First of all, many of you have asked how Ryan's Make-a-Wish trip to Florida was. It was fabulous! The weather was perfect.

We enjoyed 3 days at the Disney parks, a day at Universal Studios and a day at Sea World.

The boys got to meet Mickey and Minnie, Goofy, Pluto, Mary Poppins, Shrek and Fiona, and Spiderman!

Sea World was a big hit. They got to pet dolphins and stingrays and even feed the stingrays.

Matthew made sure we were seated in the "soak zone" for the Shamu show. We stayed at a place called Give Kids the World where they spoiled and pampered us like royalty. They are absolutely wonderful.

Now for the medical stuff.

In our last update we said that we would be pursuing more chemo to chip away at Ryan's bone disease. At our last meeting with the docs in early Nov. we came away feeling like we still had many options..

We went in yesterday thinking we were just going to try and decide which chemo cocktail to start but were hit with some unexpected news.

They said that they no longer feel Ryan's cancer is curable but that it can be managed as a chronic thing; The reason being that they've already given him all the "big gun" therapies that historically have proven the most effective in curing Neuroblastoma and while he's had some response, it hasn't been the kind of response needed to move toward remission.

His disease has been resistant to the chemo and MIGB therapy (Philadelphia) and in such cases, with each therapy the fails, remission becomes less and less likely.

Now we're left with an assortment of chemo drugs that they feel will just hold it at bay rather than gain ground on the disease.

Basically, their rationale is that if the top shelf therapies didn't give us the big bang we needed, there's no reason to think the lower end stuff will. This scenario of holding it at bay though can go on indefinitely (i.e. years) in the hopes that in the meantime, some new treatment will come along.

It is possible that some of these less effective drug could produce a positive response, but it's more something we can hope for rather than expect.

We're not sure what happened in the last few weeks to bring about this new outlook. Perhaps they just didn't want to ruin our trip to Disney and saved it for now.

Whatever the case, we are NOT prepared to just tread water and "manage" his disease. We've spoken with Sloan Kettering and they're formulating a recommendation for us.

Some of their treatments would mean a rougher road as far as side effects go. While we certainly hate to see him sick, we also know that in the past he's tolerated treatments very well and if it means knocking down the disease, then it's worth it.

We are NOT throwing in the towel and we will go wherever we need to in order to fight this aggressively.

As we've said before, Ryan is as tough as nails and he WILL WIN.

Thank-you for your prayers.

Love, Norma and Paul