When People Hear “Maintenance,” They Think It’s Over

The Truth About the Maintenance Phase of Childhood Cancer (B Cell ALL)

where we are now

When people hear the word “maintenance” in childhood cancer treatment, they often assume it means we’re done.

That the hardest part is behind us.That life is back to normal.That the storm has passed.

I understand why people think that. The word maintenance sounds calm. Controlled. Almost like the cancer chapter is closing.

But the truth is a little more complicated.

Maintenance is better than the earlier phases of treatment — in so many ways. But it is not the end. It’s still treatment. It’s still medicine. It’s still constant monitoring. And it’s still a life that revolves around cancer more than most people realize.

Parker’s Life in Maintenance

Right now, Parker is in the maintenance phase of treatment for B-cell Acute Lymphoblastic Leukemia.

We are two years into this journey, with about two and a half months left if everything continues to go as planned.

Maintenance looks very different from the early days of treatment — no long hospital stays, no constant emergency trips, no infusion pump connected 24/7 like during the Blina phase.

But life still revolves around treatment.

Here’s what maintenance actually looks like for Parker.

He is back in daycare!

Every single day he takes oral chemotherapy.

Every weekend he takes an antibiotic to protect his immune system.

Every three months he has a week of steroids, which can bring mood swings, discomfort, and side effects that remind us we’re still in the fight.

Every three months he has a lumbar puncture, where chemotherapy is administered into his spinal fluid.

Once a month we go into clinic for lab draws to check his blood counts.

And if those numbers are too low — which often happens — he may need an infusion to help his body recover.

So while maintenance is easier than the earlier phases, it’s still very much part of the treatment journey.

The Emotional Side of Maintenance

One of the hardest parts of maintenance is the way the outside world sees it.

People say things like:

“Is he done yet?”“So everything is back to normal now?”“You must be so relieved it's over.”

And while we are incredibly grateful to be where we are, the truth is we’re still in it.

Maintenance is its own kind of marathon.

It’s the long stretch of the tunnel where the light is finally visible — but you still have to keep walking.

You still worry about lab results.You still watch every fever.You still track every medication and appointment.

The fear doesn’t disappear overnight.

It slowly softens over time, but it never completely leaves.

A Different Kind of Strength

Maintenance teaches a different kind of strength.

In the beginning, you survive day by day.

Now you learn how to live in the in-between.

You celebrate the normal moments — a day with other kids, playing outside, laughing with siblings — while still carrying the quiet awareness that treatment is ongoing.

You become incredibly grateful for ordinary things.

A normal lab result.

A month without complications.

A child who feels good enough to just run and play.

Those moments feel huge.

The Tunnel Is Long

If there’s one thing I would want another parent walking this road to know, it’s this:

The tunnel is long.

Longer than you expect. Longer than you prepare for.

But you keep walking.

Step by step. Appointment by appointment. Month by month.

And somehow, you get closer to the end.

We are two years into this journey now, with two and a half months left if everything continues to go the way it should.

And every single day we hold on to the same hope:

That Parker stays in remission.That this chapter closes.That the long tunnel finally opens into the light.

Until then, we keep walking.

And we keep believing.