We’re on day 18 of round 5 (Intensification 3). Counts are about as low as they go, but that’s to be expected.
The last post was published just as the second leg of this round’s chemo was starting. Most of that was fairly uneventful: four doses of cytarabine every 12 hours and then a shot of Rylaze to end the round’s chemo treatments. I think this may have been the most painful shot he’s ever gotten, but he handled the leadup better than I’d seen before. He’s done with “pokes” this round unless he spikes a fever during recovery.
For that last shot, Micah and Mayumi wrapped a gift and did the “Last Chemo” artwork in the photo below. Thanks to Bree’s Blessings for donating the Daily Bugle Lego set which will complement the Marvel Avengers set previously donated by Little Wish mentioned in a recent post. Seconds after that last chemo shot, the nurses and staff in the room also played music and celebrated. It was a moment.
I haven’t covered counts much this round. Platelets have progressively dropped about 20 points a day starting from that first leg of chemo treatments. They finally got below 20 five days ago which is the threshold to get a transfusion. The transfusion bumped platelets to 61, but they just keep on dropping and he got another transfusion this morning. Round-to-round, stabilization of platelets has been the most consistent earlier indicator of recovery. We’ve probably got a bit until that happens, but will be good to see it.
Hemoglobin held really well for the first 15 days, but is starting to drop quickly from 9 down to 7.6. He’ll get a transfusion once it drops below 7. If I were to guess that will be Saturday morning.
ANC was around 150 for the first 12 days and then really dropped. I’d say he’s been at zero immunity for about the last four days. He was at zero for 16 days last round and then spent another 9 days in the hospital with a very low ANC (between 60 and 130). From what we’ve heard, this round is again very heavy chemo, but perhaps slightly less than last round.
Guesses of days to recover and discharge from the hospital would be just that, but he’s doing well. He wasn’t eating or drinking well for a few days after the end of chemo treatments. He was very tired and lost about 4-5 pounds; enough so that we added an appetite stimulant. We’ve also seen creatinine levels edge up and have really pushed the fluids to keep him hydrated. The last three days his appetite has been great and he has a lot of energy in spite of the dropping hemoglobin. He’s started to crave things beyond pancakes and rice and ventured out to pizza and hamburgers. Today, on a tip from our doctor, he even downed a Philly Cheesesteak. These are not the healthiest options, but his weight is now getting back in check.
Last week was also a “no screen week” for his school. He took part in that and I think that contributed to a bit of malaise. Screens shouldn’t be necessary and we’ve gone overboard on them these last months, but they’ve helped at least keep him engaged during lulls in activities, of which there are many. As he once said to his teacher who was trying to figure out a time to meet with him “I’ve got A LOT of time”. That is not to say the hospital hasn’t kept him engaged, as they do a really great job here.
As a quick followup on the room situation mentioned last post, we did end up changing rooms due to the black substance in the water. We ended up back in the same room that flooded in round 3. Things have been good in here this time. The bathroom sink stinks; we think it’s just the drain so we covered it and don’t use that one. But we’ve got a working sink in the main room, hot water for showers, and an operable thermostat so we’re all good.
The bigger concern of late is just keeping Noah from getting sick. I’m typically here from Friday afternoon through Monday morning. I got here on Friday, the 13th so wasn’t around Micah starting then. That’s good because he started to get sick with a fever on the 15th. As such, Mayumi stayed with him until he started to feel better. He got tested for the flu and it was negative at that point.
We then made the switch last Friday and I was with Micah for a few hours before he started coughing and spiked another fever. At that point both Mayumi and I had been at least somewhat exposed to him, but we decided to switch back because, honestly, Mayumi is better at taking care of human children than I am. That night Micah tested positive for influenza B. It goes without saying, this would not be a good time for Noah to get the flu so we’ve been pretty concerned since.
Both Mayumi and I are on a prophylactic round of Tamiflu for 10 days and, thankfully, neither of us have had symptoms. I’ve been even more careful while at the hospital with masking, disinfecting, and such. So I’ve left the hospital just once in the last two weeks, but it’s hard to complain. I can walk outside the room whenever I like. Noah’s had over a combined 150 days of being isolated in a room and complaints and negativity have been few and far between. The hardest part since last Friday is just that I’ve avoided hugs, but that rule is loosening now. We’ll hold our breath a bit until counts start coming up, but let’s hope we get through without some sort of virus or infection.
Also, on the Lego front, Team Joey stopped by and Noah was able to pick a Harry Potter set (picture below). It was perfect timing as Noah just finished the last book in the series the other day. As soon as he did, two nurses came in and had a list of hard-hitting questions about his review of the series. I’ll have more on Harry Potter-related things happening here, but we have a number of serious Harry Potter fanatics taking care of Noah. I’m starting to wonder if it is part of the pediatric educational requirements. This has also been something of “Slime Week” as that’s what he wanted to do in art therapy every single day (pictures below).
Not much else to cover. We’re going to watch the Hawkeyes take on Nebraska tonight. We both got pretty excited the other night with the big win over Florida. Go Hawks, we love you all, and over and out.
