June 9, 2026

It’s been a loooong time since the bell ringing post. Most importantly, Noah is good; there will be no bad news in this post.

I guess let’s just dive in and catch up. On the day of the bell ringing (April 28th), counts were not too high. ANC was 432, which is still technically severely neutropenic. Platelets were normal, but hemoglobin was fairly low at 9.9. As such, I was a little anxious about how slowly counts were moving up. Even so, Noah was home and able to hang out with friends with a mask. It was a pretty similar situation to what he could do in between each of the chemo rounds at home.

The next week’s labs (May 5th) finally saw a decent jump as ANC bumped to 910 and hemoglobin to 10.9. This made it such that Noah could be outside without a mask and, most notably, was high enough to move forward with removal of his central line. As mentioned, while the central line has been critical to the delivery of chemo, other meds, and pulling labs, it also presents a significant infection risk.

The procedure to remove the line was performed on May 11th and went smoothly. After a few days, Noah’s chest was all healed up. This was a very big step. No more worries of infection risk, flushes and heparin locks, or dressing changes. About every day for 8 months I prepared his dressing for a shower. I’m not going to say it was bittersweet to no longer have that task, but there is sort of an adjustment period here, even in letting go of routines we once saw as onerous.

Two weeks later (May 20th) we got labs again and saw another big jump. Platelets stayed in the standard range at 296 and hemoglobin went to 12.6, which is pretty well normal. ANC jumped to 1634, which is just above the threshold of neutropenia (1500). Every lab going forward is going to be “big,” but this was both the first of our monthly labs and the first where we got back to “normal-ish” counts. On the way home Noah said “I’m going on the trampoline and nobody can stop me!” Indeed, by the time I got inside after closing the garage door, he was jumping around on the neighbor’s trampoline.

Since that point we’ve opened up to more normal activities. The last day of school was May 22nd. Noah visited the school on that day for a few hours, which I think gave him (and his schoolmates) a bit of closure on the school year. This was a lost year in terms of in-person school, but it was not a lost year in terms of staying connected to the school. He met with his class and teacher via video frequently throughout the year. There’s no direct replacement for in-person instruction, but his Oak Trace and hospital teachers kept him engaged. If he ends up being a little bit behind, that’s something we can work through; that’s a much easier challenge to take on.

So what’s the routine going forward? As of right now, not actually that much. The lack of a central line really changes things as we no longer need to be checking for a fever day and night. The only medication he gets is Septra, and that’s just on the weekends. This is a medication to avoid a specific kind of pneumonia. We’ll still watch for signs like easy bruising, a nosebleed that won’t stop, or extreme tiredness — but no active testing. He gets monthly labs; the next is in a couple of weeks. I’m still adjusting to that frequency; there is some comfort in getting eyes on daily labs. Noah certainly wouldn’t want daily labs because getting them now requires a “poke,” but we’re thankful to be in this phase.

We have no idea what the future holds but, as you probably would guess, the risk of relapse is front-loaded. There is really no such thing as a “cure,” but the five-year mark is the typical point where the relapse rate for pediatric AML approaches the general population risk. We’re a long way from that, of course. As such, every bout of tiredness or lethargy is viewed through a different lens, but we’re adjusting to this new normal and taking it day-by-day and lab-by-lab.

Mayumi made a really good point a few weeks ago that, if Noah were to relapse, we’d have some amount of regret if we passed on some things that get him back to normalcy and let him experience a fun summer. The counts were always going to dictate most of that, but there is also a component of us taking our own steps toward, in some sense, “letting go” and moving forward with life as best we can. This means just generally saying yes to more things; jumping on a trampoline crowded with 10 kids, digging a hole in our backyard, and playing with frogs.

The biggest thing we did was something we barely remembered called a “vacation.” This all came together fast as Noah’s counts recovered, but we were lucky enough to get to attend a Lighthouse Family Retreat this past week in the Destin, Florida area. I can’t say enough about this; it was the best thing we’ve done as a family and exactly what we needed.

The way Lighthouse works is that volunteer families raise money to cover the cost of both their own family and a family experiencing childhood cancer, so both can attend the retreat — and then those families work the entire week fully supporting those retreat families. Each of the 10 retreat families was paired up with a couple of volunteer families. I lamented there that the ratio of retreat family members to volunteers was absurd in a good way. The whole thing was a giant soft pillow of love and compassion.

The format was a large group breakfast, music, and a message in the morning. After that, the kids broke into age groups and did various play activities (mostly swimming) while the cancer parents got together in a room for something of a counseling session with a volunteer couple who moderated discussion. The middle of the day was just time for families to relax and do whatever they wanted. And then there was always a group dinner. Interspersed were a men’s poker night that I sadly lost, a women’s craft session, a men’s counseling session, and a fancy dinner and date night for retreat couples.

The counseling sessions (called “Common Ground”) were not only the hard “share your feelings” part, but also the most impactful and cathartic part of each day. We are not the only families touched by unfair challenges; the longer someone lives the more opportunities they have to endure hard times. Even within that small group we had different cancers, different stages of treatment, relapse, and everything in between. Even so, we had more in common than not, and being able to share and lean on each other was really meaningful and helpful. That room was filled with sorrow, grief, and hard-to-hear stories, but also joy, strength, and love.

One thing we found was that we’re not the first family to derive most of our strength and hope from our child who is fighting cancer; that was a common theme. These kids were dealt a really tough hand and they’re all amazingly resilient. This week gave our kids and many others a time to just “play” and be kids. Towards the end of the week Noah asked if we could move to Florida. Micah only asked that we stay for just a little bit longer…like a year. Truly, I cannot thank the volunteer families enough and, for other families dealing with childhood cancer, I can’t recommend going on a Lighthouse retreat enough. They are 100% focused on supporting the emotional needs of these families and, with families of various backgrounds, meeting them where they are.

Below are a bunch of random pictures from the last month; most from the retreat. But one last “catch up” note: Noah got a bacterial infection in round 5. That all started the morning of this post. That day actually began with the most exciting visitor possible: Iowa Hawkeye and Indiana Fever player Caitlin Clark. It took a bit to get ahold of the pictures, and things turned rough really quickly that day, but Noah was excited — maybe as much as I was. Anyway, you’ll see these pictures at the tail end of the gallery below. Now that we’re long past that bacterial infection, I can more easily kid that she truly brought the “Fever” that day! To be clear, Noah’s infection was already ramping up when she stopped by outside the door. We had a number of Pacers and Colts stop by during treatment and we’re thankful for all of them. I doubt there’s a pro athlete with a more demanding schedule than Caitlin at this point, and that she took time to say hello meant a lot.

With that — we’re thankful, we’re hopeful, and taking all the summer fun we can get. As always, we love you all and over and out.