In February, Beau and I traveled to CHOP for his 60-month post HuCAR T-cell follow-up. At this point in follow-up care he is seen every 6 months through year five, which incredibly is this coming August. Click here to read up on my first post about this visit.
Clinic Visit
The visit itself was rather uneventful. We had to wade through the red tape of changes to insurance and a hospital system that, oops, didn’t have Beau listed as a trial medicine patient (…60 months in…) But then we caught up with our favorite nurse, Preetha who seems like both a new friend and a life-long one every time we see her.
Everything is different. and nothing has changed, as visible in these snaps- the first from 2022, the second from this recent visit (2026).
Anyway, Clear labs. Good exam.
We did bring up knee pain that Beau has been having on and off, though more on than off lately. The team nodded in the way clinicians do when something is both common and worth noting. They asked whether we were connected with our local survivorship clinic yet as this is something to have evaluated there.
As soon as they asked about it, it hit me. Beau had been mentioning his knees for months, and I had been resisting the quiet pull that it was something to address.
That is the inside-out nature of survival.
Hyper vigilance dancing alongside the hope that things have returned to normal.
We had quietly drifted into the category of the lucky ones, the families who make it through treatment. And for goodness sake we are still enrolled in trial medicine, being seen more often than most off- treatment kids, who needs Survivorship Clinic?
A new focus: Survivorship
It was like a blurry picture snapped into focus:
Beau hadn’t merely finished chemo. He endured it. Two full years of chemotherapy protocols, steroids, central lines, hospitalizations, infections, and side effects, followed by trial medicine across the country. More chemo. More pokes. More prods.
Even if the labs are good and the exams stay routine, he is still the body of a child who went through all of it. Beau’s body took the hit for every one of the medications he was dosed.
Bodies keep record.
We left clinic and I felt resigned- I guess we do need to get in with the Survivorship Clinic back home. But doing that means we have to look at all the “long term side effects” square on which is quite frankly not something I am excited to do.
Updating the Family
After clinic I sent our usual update text to the “Beau’s Health Updates” text thread- the running group message that includes grandparents and aunts and uncles. The thread that once held its collective breath for updates now rallies to sing praises.
Great visit. Blood work looks good. One lingering concern is some pain in his knees that has been showing up more often than not so we are keeping an eye on that – hoping that it’s growing pains, but watching closely as AVN, avascular necrosis in the knees and hips, is an unfortunate and common side effect of cancer treatment.
Within seconds the replies started rolling in.
Sounds like growing pains to me.
Probably just a growth spurt! He’s due for one!
Surely that’s all it is.
Everyone hopeful. Everyone relieved. Everyone rooting for the most ordinary explanation possible.
Not me though. My body tense as I watched the thread light up with a hope that felt untethered from reality.
Side effects of chemotherapy: The not so fine print
The fine print of chemotherapy. Why is it even called fine print? It’s listed explicitly as you consent to standard therapy, and over again when you sign on to trial medicine.
Loads of toxic chemotherapy will be administered, expect side effects.
Most short term, but some long.
Bone complications. Joint complications. Endocrine disruptions.
The warning is that these things might show up years later- but WHAT DOES IT EVEN matter because at that moment you are signing up for the chance at survival.
As parents we accepted every possible future consequence in exchange for the one outcome that mattered: Beau lives.
But here we are now in long term follow-up, in survivorship, and the urgency to survive fades. Life grows around the whole experience. The labs stay clear. The check-ups feel routine. And almost without realizing it, I start to believe we may be above the horrific side effects.
Until one day there is knee pain.
And suddenly something very ordinary, something that happens to millions of kids, is no longer simple. Because 7 years ago we lost something we didn’t even realize we would need to grieve. The day Beau was diagnosed, we gave up the rite of passage: growing pains.
And so texts of hope feel untethered, and I slip back in to thinking the solid ground is worry.
Survivorship
We are hoping something as ordinary as knee pain could be the possibility of a growth spurt. While also not being native to the truth that Beau spent years on a chemotherapy protocols that clearly listed long-term musculoskeletal problems, joint pains, secondary cancers as the terms for survival.
Survivorship will continue to be something I figure out how to embody as the parent of child whose childhood was shaped by cancer. Holding both the celebration and hope for a peaceful future alongside the hard-won wisdom that in a world with childhood cancer, life owes you nothing.
I thought Survivorship would feel like we were done, but I’m finding it feels more like the dance I know so well. It’s like the tagline of this blog that I penned years ago, without realizing how long its meaning would last.
The Heavy Wait: the intersection of gratitude and lament.
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