Ethan just completed another cycle (hospital + recovery at home) of Interim Maintenance (I/M) — so he has now finished two out of four rounds of this phase of his treatment. He was a couple days delayed to start due to low platelets; on Thursday 3/12, he had bloodwork done early in the morning, and after waiting for an hour in the hospital lobby, we found out that he made counts and could start. So he was admitted for Round 2 and spent much of the day receiving the required hours (6) of pre-hydration before the high-dose methotrexate could start. At around 5:45 Thursday evening, Ethan received Vincristine and the high-dose chemo infusion was started (a 24-hour infusion).
Ethan ended up being in the hospital four 4 days, just like I/M Round 1 — which was good, it could be a lot longer! He was in a good mood at admit, but by day 2 he was tired and irritable. We always notice how quickly “hospital mode” sets in — not helped at all by the lack of sleep that happens here. Like the prior round, sleep is especially worse during I/M because of around-the-clock chemo and med drips, which cause him to pee so frequently throughout the night. On top of that, without fail the evening meds arrived late and in pill rather than liquid form (so they had to be sent back and arrived even later) — so an already-tired Ethan went to bed each night way late and then was up much of the night. Ethan’s appetite went away quickly, and by Sunday (day 4) the mouth sores started up again. Not a ton of schoolwork got done during this stay, but Ethan read a ton of Harry Potter (he’s loving the series and zipping through it). All in all the stay wasn’t terrible, but he was ready to leave when the time came. At at the end of day 4, Ethan’s Methotrexate levels dropped below the cutoff and he was discharged around 8:00PM. (Just after I discovered a delivery service that will go the hospital — is a $60 taco worth the calories that it gave him?? At the time, it sure felt like it!)
The first week home from the hospital after I/M Round 2 wasn’t so great. Ethan felt nauseated, he developed mucositis again so his mouth and throat were very uncomfortable, he came down with a cold, his leg started hurting him, and he literally wouldn’t eat. The following Thursday 3/19, bloodwork showed that his liver functioning was too abnormal, so we were told to stop his oral chemo (which he is supposed to take daily) to allow his liver to recover so he can have a better chance of starting Round 3 the next week. By Friday — 8 days after he received his in-hospital chemo, Ethan started to feel better. He was supposed to admit to the hospital for Round 3 the following Thursday 3/26, but his ANC (Absolute Neutrophil Count) was too low, so we had to wait until after the weekend to check his numbers again. Which gave him an extra weekend and quite a bit of time (almost two weeks) of feeling good. Bloodwork yesterday (3/30) came back just below the cutoff to start, but he made numbers early this morning (Tuesday 3/31) and is starting I/M round 3 today. We’re hoping that Ethan can be discharged by Friday evening so we have a chance of joining our family’s Passover celebration on Saturday in Moorpark.
A Few Sidenotes. Two weeks ago we saw a pediatric neurologist who specializes in sleep, primarily to address our difficulties with Ethan’s persistent night terrors that started a few months ago. We spent a bit of time discussing the neuropathy he has been experiencing as well as long-term neurocognitive issues, but we mostly talked about sleep. The doctor had many suggestions pertaining to increasing normalcy for Ethan and decreasing anxiety, but most of them didn’t feel very realistic given the demands of his treatment right now. One thing she did insist on is that he sleep in the same room as us from start to finish each night (rather than switching rooms when we finally tire of settling him down at some point in the middle of the night). She also said that from the time Ethan goes to bed, one of us needs to be in the room with him so we can catch the night terror early and calm him down quickly (which we can’t do when we’re not in there, because we don’t hear it in the beginning). We’ve implemented this and it has been very beneficial — the terrors have calmed down significantly. The down side is Steve and my little time together has now just about gone away completely — one of us is in the dark with him (reminiscent of “hotel room style” with a reading light/computer light), and we’re taking shifts until we both go to bed. Also per the neurologist’s suggestion, he’s now on a mattress that lives on the floor in our room, so at least we have a bit more space and I think we’re all sleeping better (though I miss the all-night cuddling).
The weekend that Ethan started feeling better, we witnessed Ethan’s first meltdown over all that he is missing. He watched his brother go off to a birthday party for siblings that both Caleb and Ethan are friends with, at a neat indoor climbing gym that Ethan has been wanting to try out. Ethan picked out a gift for his friend, made him a card, and seemed OK hanging out at home when Caleb left. But when Caleb arrived back home excited about the party and the gym, Ethan just crumbled. The build-up of missing everything now for 5 months, and feeling good enough to go. It’s amazing that hasn’t happened until now.
This phase (I/M) contains 4 rounds of in-patient chemo. So far, for both of the first 2 rounds, we’ve had to stop Ethan’s daily oral chemo (“6MP”) a few days after coming home from the hospital due to abnormal liver enzymes. This has been stressful for us, as we’ve missed approximately 3 weeks of oral chemo between the two rounds and it’s our understanding that it works synergistically with the high-dose methotrexate that he’s receiving in the hospital. When we were told to hold it again during round 2, we found out that the nurse practitioner who has been at the hospital for many years did not believe we should hold the oral chemo, which caused us to question whether we should be holding it and all the time he has been off of it. Our doc insisted that we needed to for the safety of his liver, but we still were uncomfortable and unsure that was right. So we emailed the expert in LA who we had consulted earlier when the allergic reaction occurred. It took almost a week of back and forth e-mails with him to figure out that he does not check liver enzymes for 2 weeks and thus 6MP is not held in his patients so quickly as it was for Ethan. Which concerned us — as he has had much more experience than our doc here and we want Ethan’s care/treatment to be consistent with what he would do. We asked for a meeting with our local team which was set up immediately, and we had a discussion that resulted in acknowledgement on their part that Ethan was off his oral chemo for too long/”more time than [they] realized”. They did not feel that the LA doctor’s approach was completely safe (they worry about too much liver toxicity which can be difficult to recover from), but we agreed that we can have an in-between approach that feels better than what they were having us do. So our new plan for the remaining two I/M rounds is to check numbers, and if they are abnormal, not to pull the oral chemo so quickly, but to re-check and go from there. It doesn’t sit well that Ethan missed so much of it during the first half of I/M, but hopefully this new plan will result in us getting more of it into Ethan during the second half of this phase. I’m very grateful that the LA doctor is willing to consult with us even though he’s not a formal part of our team. Again, the importance of staying informed and being proactive is ever so blatant.
I had a great parent conference with Ethan’s second grade teacher last week. She confirmed that the combination of all of her work with him each week (~3-4 hours on average) and my efforts with him at home (a couple hours a day plus or minus, depending on how he’s doing and what’s going on for treatment) are keeping him on track and excelling in all key academic areas. She also said that she’s impressed by his academic perseverance — even on days when I text her to say that he’s not feeling well and may not be up for school, he is able to power through the work session with good thinking (and often a good attitude). I’m so grateful that we have Mrs. Lukkes navigating Ethan through his schooling this year. When he’s not feeling good, I often am not able to get much if anything out him. She definitely has a special thing going with him.
Some Highlights. The last couple of weeks had a handful of good moments worthy of holding onto. Here are some of them:
- As usual, Ethan continued to enjoy his outings with Papa — golf, bowling, Archie’s, the Brewery. Ethan is looking forward to Papa getting his leg brace off so they can have more “active outings” when he’s feeling up to it.
- Ethan continued to enjoy FaceTime with his 2nd grade class. Last week, he especially enjoyed reading aloud to the class the realistic fiction story that he wrote and then answering their questions. When there was a glitch with the audio and we were on the verge of rushing over to the school to actually read it in person, his complete excitement over that possibility made me see that we HAVE to make sure he makes a visit to the class before the year ends. We need to watch out for a day when his counts are good and the class is healthy.
- Ethan has had some fun times with his guitar teacher Luke recently. After his last lesson, Luke jumped in the pool to swim with the kids. And last night, he hung out with him at Lost Bean’s open mic night. He recently wrote a journal entry about his time with Luke and described him as “more of a big buddy not just a guitar teacher”. What an amazing thing for Ethan.
- One day a couple of weeks ago Ethan decided that he needed a special project to do with Nana. “Nana loves to knit, I’d like her to teach me to knit so we can do that together. Do you think it’s ok for boys to do that?” He then decided that he wants to knit a blanket “that goes on and on until I’m done with my Leukemia”. Nana loved his plan, taught him a couple of stitches, and Ethan has been knitting away.
- Ethan was super proud that he re-claimed his balance on his boogie board last week!
- Play time with friends is hard to come by these days but it’s so wonderful for Ethan when it happens. Last week Ethan enjoyed playing lacrosse and Xbox with Kyle, chess and tetherball with Jack, and handball with Quinn. Ao grateful for all of his friends (and their parents’) efforts to keep him connected.
- All the kids enjoyed starting our new mini herb/veggie garden! The kids turned over and aerated the soil, planted seeds, and are having fun making their own signs/labels.
- We’re trying to diversify Ethan’s schooling by getting outside the home to work (I’d love suggestions on fun un-crowded places to go) and doing a better job at integrating his learning into everyday experiences. In one such experience that tied in some math and science, Ethan baked “St. Patrick’s Surprise chocolate chip cupcakes”. Ethan got such a kick out of arriving at each of their doors unannounced for a late-evening St. Pattie’s treat! Check out his blog post that ties in the science.
- I am completely amazed at how long the meal delivery has gone on — approx 5 months now! The past couple weeks have been so yummy — including a fantastic Mexican feat from the Fraser-Boning family, Ethan’s favorite Mexican chicken from the Frys, yummy BBQ from the Delouses, terrific homemade soups, Zov’s from the Kennards, casseroles, etc. These meals continue to be a huge help for as as we are still plugging through the hard frontline treatment. I can’t thank everyone enough.
Round 2 of I/M down, and now at the hospital about to start Round 3…