Ethan had another week of feeling pretty good, with lots of energy and generally in a great mood. Although our schedule has been intense with almost every day hospital visits, the past few weeks have been so much more bearable than the weeks prior… he has had a more positive attitude about schoolwork, positive and actually some loving sibling interactions, more normal playdates, and just getting through the day has been easier. It’s amazing how completely different this experience feels depending on how he’s feeling.
This past week Ethan had four consecutive days of chemo (ARA-C). That part was easy and didn’t seem to bother him too much. He also needed another blood transfusion because his hemoglobin was so low (7.1). Chemo has definitely affected his appetite, even for his favorite foods.
He had his evaluations for Occupational Therapy and Physical Therapy. At the OT evaluation, his intrinsic hand muscles were very week — which explains his writing difficulties. At the PT evaluation, strength tests showed that Ethan has generalized weakness in his ankles and hips. After the evals, we started to implement home exercises for both PT and OT, both twice a day, and we plan to start therapy visits once/week for each next week. It feels like a lot on top of everything else, but we want to be proactive — especially getting it in on days when he’s feeling ok.
Although Ethan has been healthy and avoided inpatient hospital stays since Christmas Eve, Maddy has had a fever since Friday evening. We have worked hard to keep them in separate rooms, and even floors, of the house; though with Ethan’s critically low counts, I will be very surprised if he doesn’t end up with a fever (which equals hospital admit). Hopefully he’ll surprise me!
Despite all the ups of the past week, a few days ago I watched Ethan as he walked into the bathroom naked, his little body and bald head. I just ached so hard for him — for all that he has already gone through and all that lies ahead, and all the toxicity that’s going and will go into his body. The last few weeks have been ok, and generally speaking I’m optimistic. At the same time, however, I can’t look at Ethan without feeling so terrible about what he’s going through and without feeling so much fear about the unknown path ahead, both immediate and long-term. I have so much hope and so much fear at the same time, and I wonder whether the fear will ever go away. As parents, we all have that on some level. But with the cancer diagnosis, it’s like this protective bubble that keeps are kids safe from real harm has been popped and never again can it be whole.
On that note…A Few of This Week’s Highlights…
- Ethan took his first two online coding lessons and LOVED them. He’s doing it through UCode, where he works with a live teacher on various coding projects. Ethan thinks his teacher Nick is great and can’t wait for the next lesson!
- He went to the driving range twice this week, once with Papa and again with Dad. He was feeling good and excited about how he was hitting the ball.
- He enjoyed a day-long playdate with his buddy Luca, whom he hadn’t seen in a while.
- His time with his teacher Mrs. Lukkes is always a positive. After telling me what he did with her in an hour of school, I said, “Wow, you got through a lot with Mrs. Lukkes today”. Ethan: “She always puts me in a good mood…that’s her magic”. I continue to be so grateful that his amazing classroom teacher comes to our house for his schooling.
- Ethan really enjoyed recording his lines for his school’s variety show. He has participated with the same group of boys since kindergarten, and although he can’t practice with the group or be on stage this year, his buddies (well, their moms) found a way for him to be included, which thrilled him. Thank you Laura for rallying last minute to make the recording happen!
- Thank you Mills family for the so very thoughtful photo book — reading all of this buddies’ comments about him literally put a smile on his face from start to finish. Thank you also to Mika’s mom for the beautiful scarf and hat that she knit, Barbara and Doug of the yummy Katella Deli delivery, and all of the yummy meals that were delivered this week. The meals continue to help us greatly.
- Quote of the week: As we were walking into
OPI I said, “Ethan, we have had so much quality time lately huh?” Ethan replied: “Yea, that’s one good thing about this Leukemia”. I followed up with “ Is there anything else about it that’s good?” Ethan: “Yea, when I’m all done with it, going to the doctor and getting shots will all seem so easy after what I’ve been through.” This journey will definitely force him (and us all) to view life through a different lens.
Ethan started a science blog, and he checks it regularly for new followers. During a time of separation from school and friends, he’s eager to connect with people, and his blog is one way that he can. Please check out his blog and even follow it if you’re up for it — each new follower that he discovers literally puts a huge smile on his face.