Hi everyone,
A few people have told me I need to do an update, so here it is!
We got home from Ryan's 8th round of 3F8 (antibody therapy) 2 weeks ago.
Everything went reasonably well. Happy to report he is still having pain during treatment.
Remember, in the sick, twisted world of 3F8, pain is good.
It means he hasn't developed HAMA and can continue with more rounds.
We just sent off a blood sample for the official HAMA test but are pretty confident we're okay
. We're often asked how much longer Ryan will receive this treatment and the answer is for as long as he can, i.e. until he either develops HAMA or 2 years have passed, whichever comes first.
The good news is that we've now FINALLY switched over to 8 weeks off instead of 3 so we don't go back to NY until mid-March.
WOOO-HOOO!!!! There's no place like home, there's no place like home.....
During our first week in NY Ryan had a runny, gunky nose so in order to protect other immune-suppressed kids, Ryan was placed in isolation which meant that we had to go straight to his room at the Clinic each day, no playroom, no school, etc.
He had to wear a mask as we passed through the waiting areas which he HATES.
Same thing at the Ronald McDonald House so we spent a lot of time by ourselves in our room that first week.
One of the side-effects of the pain medication they give him (dilaudid) is extreeeeeme crankiness.
Our sweet, sweet Ryan turns into this unrecognizable tyrant. I can't remember if I mentioned this in a previous update or not but one of the nurses nicknamed him "Steve" when he's like that.
So being trapped with evil Steve so much that first week was a test of patience to say the least.
Fortunately, he was free once again during our second week and was happy to be able to attend the school they have in the mornings at the Day Clinic and go to the playroom for his favorite thing - Bingo. He won a Teen Titans prize which made his day.
Paul and Matthew usually come down on the weekend but Matthew was sick with strep throat so we were on our own. Ryan and I made the best of it and enjoyed a trip to the Museum of Natural History where they have a pretty spectacular dinosaur exhibit and space exhibit.
Ryan got tired after awhile so we'll have to save the rest of the museum for another day, hopefully with Dad and Matthew.
We also met some new NB kids who have only been coming to NY for a relatively short time.
Ryan (the veteran, ha-ha) enjoyed playing with his new friends, and I enjoyed talking with the other moms. It's a nice little support system.
We compare notes, commiserate, encourage each other and, sometimes even have some fun together
. Unfortunately, everyone is on a different schedule so we have no idea if we'll be in NY at the same time again in the future.
We know a few of their web-sites so we keep track of our new friends that way.
As I said, there's no place like home.
The boys have really enjoyed being together again.
They play together so well (er, most of the time). Ryan just adores Matthew and for the first few days was following him around like a little puppy
. Right now they're working on creating their own comic book together using characters like Squirrel of Wonder, Chipmunk and Ninja Hampster - all from stories Matthew has made up in the past. Can't wait to see the finished product!
By the way, if anyone is interested in how the funds raised by Friends For Life have been used so far both at Dana Farber and Children's Hospital, please visit www.myfriendsforlife.com and click on "Forums" and read all about it.
A huge "thank-you" to everyone who has donated to these ongoing fundraising efforts.
And please continue to spread the word about www.for-ryan.org.
New auction items will be added soon so check back from time to time.
As always, thank-you for your prayers for Ryan.
Love,
Norma
P.S.
Even though we don't return to NY for treatment until mid-March, we do have to go back March 1st and 2nd for scans and bone marrow biopsies.
Please pray for continued good news. Thank-you!
