Hi everyone,
Well, Ryan's 14th round of 3F8 antibodies is behind us. We've been back home for a week now so I'm a bit late with the update.
As has been the case with the double dose protocol, it was a rough week, especially Monday. He needed 4 rescues (doses of dilaudid for pain)!
Three rescues is pretty much the norm for him but Mondays are usually the worst day. Matthew was with us as it was Martin Luther King Day and he had no school. He mostly stayed in the playroom at the clinic but came to Ryan's room after the treatment ended.
Ryan still needed oxygen and Matthew climbed up on the bed to hold the oxygen hose for him. He kept his eye on the monitor and would report to us what Ryan's oxygen level and heart rate were. Cute in a sad sort of way.
Unfortunately, Ryan was out cold when Paul and Matthew had to leave to return to MA and later he was VERY upset that he didn't get to say good-bye.
Tuesday he was plagued with TONS of hives. He gets them in his mouth among other place
s and this time his tongue started to swell up. That made me really nervous. He ended up getting extra Benedryl and Visteral for the hives.
Those two combined with all the dilaudid was enough to once again knock him out for hours.
Wednesday and Thursday it was heart rate and blood pressure issues that kept us there to 6:00 and 6:30 in the evening. All this means that he never really participated in any evening activities at the Ronald McDonald House.
Wednesday there was a great dinner put out by a local Italian restaurant. He wanted to go but as we were standing waiting for the elevator, he just said "I can't. I'm going to go lay down". I brought him up some food later and he ate some while watching American Idol.
We are lucky that Ryan and his buddy Noah have been on the same schedule for two rounds now. They enjoyed spending time together in the mornings at the clinic before treatment playing with their Nintendo DS's while us moms chatted.
We return to NY in mid-February for the ever-stressful "scan week".
Alina's mom Maria came up with the PERFECT analogy to describe scan week: "......we get to walk to the edge of the cliff, take a good look at the fall below, and wait to see if we get pushed off. " That's about as accurate a description as I've ever heard.
While we were there the week before last, I asked Dr. Kushner about maybe trying to get more stem cells from Ryan. We have some in the bank at Dana Farber but they were collected after only 2 rounds of chemo.
Ryan still had A LOT of disease at that point and despite assurances to the contrary, we just can't believe those stem cells are "clean".
Early in his antibody treatment we had asked about getting more stem cells and was told it was all but impossible since he had had the MIBG treatment in Philadelphia which pretty much annihilates your bone marrow. He needed an infusion of some of his stem cells back then.
We thought that maybe since more time has gone by and his body has had more time to recoup that it might be a possibility now.
They did a blood test which indicates if anything is "floating around" and sure enough THERE WAS!!
So, when we go back for scans in February we'll stay and extra few days for stem cell collection. It involves placing a temporary line in hi
s groin and I'm told it may mean an in-patient stay.
PLEASE pray for a good collection of clean as a whistle stem cells.
Why do we want more stem cells you ask?? Well, in a worst-case scenario of relapse, there are treatments that would wipe out his bone marrow necessitating a stem cell "rescue".
So while you're praying for a good collection, also pray that we NEVER actually need them!! It's insurance, sort of like when you buy homeowners insurance and hope you never need it.
We return to NY again in March for his 15th, and I'm pretty sure LAST round of 3F8 antibody treatment. That will be the official end to Ryan's active treatment. We will continue to go to NY every 3 months for scans.
We hope you all had a terrific Christmas and that 2007 is off to a good start for everyone. Ryan's big Christmas gift from Santa was a screaming red electric guitar! No, not a toy. The real thing in 3/4 size. Paul is giving him lessons and he's loving it. Ryan also was a Little Drummer Boy in our church's Christmas Pageant. VERY cute.
Hey, check out the new Gift Shop on Ryan's site. We've done away with the auction format and it's now just a straighforward gift shop. As before, funds raised will go to NB research here in Boston.
As always, thank-you for your prayers for Ryan. Please keep all our little NB warriors in your prayers as well.
Love,
Norma and Paul
