Ryan's Story

Update of 9-15-2004:

Hi everyone,

I'm a bit late with my update but for those of you who don't already know, WE'RE HOME!!!

We flew into Manchester Monday night and arrived home about 8:00 p.m.

Ryan's MIBG treatment in Philadelphia went well.

He was infused last Wednesday over a 2-hour period. His only side effects were pain in his salivary glands which they treated with pain med. (apparently the MIBG can concentrate there and cause pain) and a slight irregular heart beat for a while which went away on it's own.

They watched it closely but feel it was never anything to worry about. It's fine and normal now.

The worst part was bordom. He had to stay in his bed the whole time behind the lead shields.

TV and Playstation were his only entertainment options. He couldn't bring his stuffed animals or any toys with him because they'd probably get contaminated and then we'd have to leave them behind.

They didn't have much of a selection of PS games or DVDs. No Power Rangers!!! Gasp!!! Oh, well.

The hardest part for me was not being able to hug or kiss him. :( That was especially hard when he was crying because of the salivary gland pain.

Amazingly, Ryan stayed in pretty good spirits most of the time. He'd pop his head up above the lead shield and blow me kisses! What a guy!!

Paul and Matthew flew down to visit on Friday and stayed till Sunday.

Unfortunately, Matthew was not allowed into Ryan's room but the door had a window so we could hold him up and they could see each other.

Matthew and I spent Saturday together and Paul got to spend some time with Ryan.

We went to the Philadelphia Zoo and he had a blast. The weather was nice and it felt great to get out!!

Ryan had a scan done just before we left the hospital on Monday. It's purpose was more of quality control rather than to see if the treatment was working.

At this point they just wanted to make sure that the MIBG went to the areas it needed to, which it did. From their perspective, everything went great. We'll have to wait about 2 months before we know if the treatment did the trick. UGH!

We're "free" until he's re-admitted to CHOP next Tuesday the 21st for round 2 of the same MIBG treatment. Again, we should be home the following Monday.

It's nice to be home and we'll be enjoying this week together as much as possible. It's tough being separated, as I'm sure you can imagine.

As always, thank-you for all your prayers for Ryan.

Love,

Norma