Hi everyone!
Here's the latest on Ryan. Backing up a few weeks first though.
In August we
travelled to NY for scans and bone marrows.
We're thrilled to report that all came back clean as a whistle!!!!
At that time we also started re-immunizing Ryan. Due to treatment, he lost all (except measles) of his immunizations and they now must be redone.
The good news is that they did the first round (4 shots) while he was under anesthesia for the bone marrow biopsies. Less traumatic that way - for both of us!
We headed back to NY last week for his 12th cycle of 3F8 antibodies. We had
gotten a call beforehand informing us that the protocol had been amended and that the treatments would now be for just 1 week instead of 2 and that they would
double the dose of 3F8 so that he would be getting the same cummulative amount.
This is for everyone across the board, not just Ryan.
Our understanding is that the purpose is to benefit children who are at higher risk of developing HAMA early so they can get more 3F8 befor HAMA develops and also to free up more slots for new patients.
Unfortunately, the higher dose is much harsher on the kids.
Ryan's pain started earlier and was more intense. Monday and Tuesday he was so wiped out that he slept from the end of treatment (about mid afternoon) until the next morning!!
On Wednesday he developed hives, which he has always been prone to, but this time he was just COVERED. Dr. Kramer took one look at him and said " he's a lobster!" He also had difficulty swallowing so he apparently had the hives in his throat too.
That freaked me out although his oxygen level stayed high. He always likes to have the oxygen on during treatment so that helped. I think he got a total of 3 Vistral and 1 Benedryl and it still took forever for it all to clear up.
On Wednesday and Thursday he also had high blood pressure issues and on Friday it was a heart rate that stayed in the 170's for hours after treatment.
His heartrate will typically go up to the 180's and 190's during the treatment but used to come back down in a reasonable amount of time afterwards. All of these issues are not unique to Ryan. Other parents reported much the same. So, all in all, I think the new one week thing sucks. However, we're stuck with it since the old protocol no longer exists.
I would have gladly gone back to it if it were an option. Many of the parents are so happy to only have to be in NY 1 week that it outweighs the negative side effects which, admittedly, are only temporary. Less family disruption, less school lost, etc. As I said though, I'd prefer the old way, but that's just me.
Ryan of course is ever the trouper. He hasn't complained at all except about what he missed out on because of sleeping so much. I frankly don't remember him EVER complaining about ANY of his treatments since the beginning. The Amazing Super Ryan!
Fortunately, the excessive sleeping stopped afte r Wednesday which was great
because Thursday evening was jam packed with fun stuff.
After once again
sweating out the blood pressure issue, we RACED back to the Ronald McDonald House in time for butterfly tagging. Ryan got to do this last September when we were there and REALLY was looking forward to it again, especially since he was missing a class trip to the Butterfly Place here at home.
What happens is a butterfly expert comes to the House with tons of Monarch butterflies and the kids get to put a numbered tag (little round sticky thing) on the butterfly's
wing and then release it. The butterflies migrate to Mexico where, supposedly,
people there try to record the tagged butterflies they find.
It was a perfect evening weatherwise for this event and all the kids had a blast. But our evening wasn't over.
The Clinic had given us and several other families tickets to see the Lion King which Ryan had been wanting to see ever since some of the cast came to the Ronald a few months ago and performed some of the songs. We all really enjoyed it. Of course trying to get a cab back after the show was quite the adventure but we made it eventually.
One of the kids we went to the show with was our friend
Alina
who we hadn't seen in many months. She was there for scans and it was great to see her so energetic and outgoing with a beautiful head of curly hair.
We also saw our friend
Jenna from New Hampshire
who also was there for scans. I'm very happy to say both girls got the "all clear".
Some of you may know that Ryan attends "school" when we go to NY.
His teacher is the amazing Miss Annemarie. She is WONDERFUL with the kids and Ryan enjoys this very much. Annemarie sets up her classroom in a corner of a waiting room at the clinic at Sloan from 9:00 a.m. until Noon.
She then goes over to the inpatient side to work with those kids.
She even comes to the Ronald some evenings to teach kids there. We purposely schedule Ryan's treatments for afternoon so he can attend school.
The New York Times did a terrific story a few days ago on Annemarie. " In a Children’s Cancer Ward, Lessons Beyond A B C’s - New York Times" .
Finally, we thought that this was Ryan's second to last round of treatment.
We learned that he is in fact on a 24 month schedule which means we will continue treatments until April of '07 - unless he develops HAMA before then.
So instead of 1 more round we're looking at, I think, 3 more.
Please continue to keep Ryan in your prayers as well as all the kids fighting this beast, especially Ryan's buddy
Hazen
Love,
Norma and Paul
