Today (Sunday) marks the end of Week 2 of Consolidation. The week started off good with his close buddies coming over to shave their heads (See post). It put a smile on Ethan’s face and we even saw him do some running around which he hadn’t done since his diagnosis (actually since weeks before dx). Tuesday he had Consolidation spinal tap #2. This one was considerably easier for him because it was in the morning; he didn’t have to go all day without eating. He came out of deep sedation super silly — he said he was a robot and spoke in a deep computer-like robotic voice, told Papa he looked like a turtle, and told me I have huge ears (only my left ear is big!). Tuesday through Friday he had four more consecutive days of chemo. Some of the more common side effects that we were told to watch out for included severe vomiting and fevers (the latter of which would require hospital admission), and especially with Hanukkah starting, we were praying he would avoid both of those. Caleb also came home from school Tuesday with a fever and developed a good cough, so we were sure Ethan would end up in the hospital by the end of the week. Somehow that did not happen last week, and we’v been able to enjoy Hanukkah together every night so far (knock on wood). Our traditional extended family Hanukkah party had to be modified this year to a more intimate celebration with just grandparents and my sister and her kids. While we love the large family gatherings and missed celberating with the rest of the family, we relished the quieter and more intimate time together this year. I’ve been very grateful for this week and that Ethan could enjoy the holiday.
Highlights of the week… I’m going to try to include highlights as a regular part of these posts. It helps me to gather happy moments and focus on the positive. Here are few from this past week:
- Putting and lunch with Papa at Tustin Ranch Golf Club
- His buddies shaving their heads at our house, and Max W. joining in from home.
- School sessions with Mrs. Lukkes — this was the first week Ethan got in the full 5 hours of time with her.
- Ethan discovered a neat science book that is giving him all sorts of ideas for future experiments. Check out his blog for the book rec.
- We caught Ethan dancing for the first time in a couple of months!
- Visits from Aunt Barbara and Uncle Doug, Principal Jones, Rabbi Leah, and friend Aidan Colburn. He loved comparing/trading baseball cards with Aidan!
- Playing the dreidel game with real money this year.
- Walking around a local neighborhood to check out Christmas lights — it was good to be “out” with the whole family (our first time).
Week 3 of Consolidation begins tomorrow with a blood draw and possible blood transfusion or platelet infusion. We’d love for another week as good as this one.