. Well, we’ve finally finished radiation! Wednesday was Ethan’s 30th treatment ~ his last day. Over the last six weeks, Ethan became very fond of his “radiation ladies” and became teary-eyed last night when I reminded him that we didn’t have to wake up early to go to the hospital. He asked me several times today what I thought Denise (one of his favorite nurses) was doing and whether or not she missed him... I’ve already had to promise him several times that we’ll visit everyone in the Radiation Oncology Department next time we’re in the hospital. I suppose we’ll just add that the rest of his busy agenda ~ watching the helicopters, going to the playrooms, touring the ambulance bay… We’ll have to go early just to get it all in before they’re ready for him.
So now we have 2 weeks of rest before we begin our next round of full-blown chemotherapy. We’ve been more-or-less following the infant/toddler medulloblastoma protocol, which prescribes:
Instead, we will remain on the induction chemotherapy regimen for the next 8 months, with Cisplatin perhaps being switched out mid-way through for Carboplatin, which is less detrimental to the hearing. Our plans are to check into Fairfax INOVA on Monday, December 2nd to enter into what we hope to be our final stretch of treatment that will last until mid-summer.
We had a
wonderful time last weekend in Asheville at the PBTFUS national leadership
conference. We walked into a
conference facility full of about 100 people who all just wanted to give us hugs
and tell us that they’re in the fight with us.
I found it all very emotional – SHOCKER!
I understand that Ethan and I even made Asheville’s evening news, but I
haven’t seen the tape yet. I only
vaguely remember the interview… It seems like I may have gotten a little
emotional again .
The highlight of the trip was on Saturday when Ethan was taken on a 2-1/2 hour tour of the Asheville Headquarters Fire Department where Captain Mike treated him like royalty. We all got to take their Ladder-1 out for a spin (complete with sirens). They then parked it at a Recreation Center and let Ethan and Albert climb into the bucket while they lifted the ladder and spun it around a bit. This was clearly the high point of Ethan’s trip, if not his whole year. I've attached photos as evidence. It was an equally profound moment for Bert, but on the other end of the spectrum ~ he really just doesn’t handle motion well. If anyone needs a good laugh, remind me to tell you the story of Bert and his best friend Mike at Bush Gardens… talk about a low points.
Ethan’s also been invited to film another commercial for a public outreach campaign being launched in a partnership between the Honda Motorcycle Division and the PBTFUS. It will feature Ricky Carmichael, who is apparently some sort of Motocross Icon. I don’t follow racing, but my brother nearly fell out of his chair when he heard the news. We have to clear it with Ethan’s doctors first, but it sounds like something fun that would reach a lot of people.
Between now and December, though, we have no plans and hope to just enjoy our time off. I’ve foolishly volunteered to do Thanksgiving at our house, despite my deep-rooted fear of cooking any meat product that still resembles its original structure. I’m not sure how I’ll get past that one, but I do know I won’t be sticking my hand inside ANY turkey. I imagine a lot of our guests will now politely decline…
Hope everyone has a nice Thanksgiving holiday. Hopefully my neighbors won’t tell if they see a pizza man sneaking in…
Kim.
