This past week was relatively uneventful (a good thing), and thankfully Ethan remained his “old Ethan” self. His blood draw on Monday did not result in a transfusion (I was sure it would so that was good news), and his four days of chemo went smoothly without any significant side effects. Ethan was generally happy and probably the most active that he’s been, playing ping pong and tetherball, going to the driving range, enjoying his new Xbox sports game, running around the house with his siblings, and even hitting a few tennis balls — it was all so great to see, especially given that just a few weeks before it was hard to get him to walk upstairs.
This was the second week since diagnosis that Ethan has gotten in all five hours of his home schooling — a relief for me to know that he’s getting in some quality instructional time beyond what I’m able to do with him on my own. Ethan’s second grade teacher (also his home-school teacher) is so fantastic, so every hour that he has with her I can rest assured that he’s cognitively engaged and doing some good thinking. In addition to his schoolwork, while at home this week Ethan enjoyed doing some science projects, is loving his new XBox, has been tolerating his loud little brother better than when on steroids and feeling crummy, and has been reading avidly. Right now he is very much enjoying Holes (by Louis Sachar) and Dad has been reading aloud The Hobbit, which the kids are greatly enjoying.
I said above that Ethan has been tolerating chemo well this week, although there has been a new, not so positive side effect that has really become more apparent. Ethan’s writing has really deteriorated — the difference in his writing from the beginning of the school year to now is tremendous. After doing some research and talking with his oncologist, we’re learning it is likely peripheral neuropathy, which is a common side effect of Vincristine (one of the regular chemos that he’s getting). Over the last several weeks, Ethan has become a reluctant writer, which he never was, and it has been hard to get him to do schoolwork that requires a considerable amount of writing (that’s one of the appeals of his science blog — I let him do a post to replace an entry in his daily journal for his teacher, and he far prefers typing). His writing has become less and less legible, he is complaining that his hands are shaky, and on Monday his teacher said she had to have Ethan read his work to her because she couldn’t read it at all. I immediately spoke with the doctor and received referrals for occupational therapy (for his hands) and physical therapy (for some apparent weakness in his legs), and he will go next week for initial evaluations. I tried to do his PT and OT through the hospital, but I was frustrated (and shocked) by what seems to be a strong deficit approach to treatment. I was told that there would likely be a three month wait because Ethan is not a candidate for urgent attention! Based on what we’ve seen so far with Ethan and what we’ve learned about the long-term effects of chemo on kids with ALL, we want to give Ethan every opportunity to be as strong as possible when he is at the other end of this journey, so we want to be super proactive. We’re not comfortable waiting until Ethan presents with severe deficits!
Ethan had a good week so it doesn’t require much work to find this week’ positives. It has only been a couple of months of a 3 1/2 year journey, and it’s amazing how I already look at my life/my kids’ lives differently. I definitely appreciate and cherish everyday moments and time spent together like I never did before.
A Few of the Week’s Highlights…
- Painting, playing games, and reading with his grandparents, who are in town from New York
- Going to the driving range with Papa, lunch at the golf club, and hitting a few balls at the tennis club — all in the same day. We were shocked that he wanted to join Papa and Maddy on the tennis court, and decided it was ok for him to go if he takes it easy (and it was an uncrowded time of day at the club)
- Making an ice cream sundae with all the treats from the Colburns and receiving the Science in a Box subscription from cousins Rob and Brooke — Ethan is excited about the monthly science boxes he will receive! Thank you Colburns and Liebermans!
- Some special visitors came by this week: Ethan’s buddy Colin, big cousin Jamie (who danced to some Elvis songs with Ethan), cousin Sami, and Uncle Rick and Ann. As always, your visits keep both of us connected and feeling supported.
- On Saturday, Ethan had an especially great time with his guitar teacher Luke. Their normal 45 minute lesson expanded to almost two hours (longer than Ethan lasts with anything these days), and Ethan was happy and engaged the entire time. When Luke left, Ethan said to me: “We played for half of it and talked for half of it, he has a really easy to talk to way and I think of him as my teacher and my friend.” Luke is awesome and we so appreciate the role that he has in Ethan’s life right now.
Another week down, and we head into week 6 of Consolidation.