My son is in remission. We have been told this. We have written it down. We have said it out loud at family dinners and birthday parties and a thousand small moments where the word felt enormous coming out of our mouths.

I want to write about what that phrase actually means, in our house, on a regular Monday.

What "in remission" means medically

In pediatric oncology, remission means that there is no detectable evidence of cancer in the body using current diagnostic methods. For acute lymphoblastic leukemia, the kind my son had, remission is typically confirmed through bone marrow biopsies and blood work that shows no measurable cancer cells.

Remission is not the same as cured. Remission is a status. It means today's tests are clean. It means treatment has done what we hoped. It means the medical team is monitoring for any sign of return.

The longer a child stays in remission, the better the outlook. After several years off treatment with no recurrence, the conversation begins to shift toward cure. Until then, our family lives in remission, which is its own particular state.

““Play is how a child processes a hospital. It is not a break from treatment. It is part of treatment.””

— Child Life Specialist at Advocate Children's Hospital.

What "in remission" means in our house

We are not in active treatment

Most days, our calendar looks like a regular family calendar. School pickup. Dinner. Bedtime. Weekend plans. The hospital is not on the daily list anymore.

We are still in follow-up

We still have follow-up appointments. Survivorship clinic. Echocardiograms. Lab draws. The port is still in his chest, even though it is not currently being used. The medical team is still part of our family.

We are scanning every few months

The follow-up scans punctuate the calendar. Every few months we go in for a check. The four weeks leading up to those scans are different from the rest of the year. (I wrote about that recently if you want the longer version.)

We are alert without being alarmed

We pay attention. A persistent fever gets a call. An unusual bruise gets a mention at the next appointment. We are not panicking about every small thing. We are also not pretending the watching has ended.

We are rebuilding the life around it

We are building the parts of life that paused during treatment. School. Friendships. Family routines. Hobbies. We are doing it with one eye on the medical reality and one eye on the future we want our kid to have.

What "in remission" does not mean

It does not mean the cancer is gone forever

We do not get to say that yet. We may eventually. Right now, it means the cancer is not detectable. That is enough to live on. It is not enough to relax completely.

It does not mean we are no longer a cancer family

We are still a cancer family. Our son is still a pediatric cancer survivor. The diagnosis is still part of our identity. The years of treatment are still part of our story.

It does not mean my husband and I are emotionally done

Remission does not unwind years of vigilance, fear, and adrenaline. Our bodies and minds are still metabolizing what just happened. We will be for a while.

It does not mean we have answered every question

We do not know what the next 10 years look like. We do not know what late effects he might experience. We do not know what survivorship will feel like for him as he grows up. We are taking it as it comes.

What "in remission" feels like

It feels like exhaling. It feels like a small, soft relief that does not always stay soft.

It feels like joy with a thin edge of caution underneath. It feels like a Tuesday that is just a Tuesday, with no clinic appointment in it, and the small surprise of remembering that Tuesdays used to be the heaviest day of the week.

It feels like watching my son climb a tree in the backyard and realizing, for a second, that I am not bracing.

It feels like cake at a birthday party that no one had to schedule around chemo.

It feels like enough, on the good days. It feels like a quiet, careful, grateful enough.

A note for the parent reading this

If you are about to enter the remission phase, your version of "in remission" will be your own. Some families experience profound relief. Some experience profound anxiety. Most experience both.

Whatever you feel as you cross into this phase, it is the right thing to feel. The phase has its own shape. The shape comes into focus slowly.

A note for the friend or family member

If a cancer family in your life has reached remission, please celebrate with them. Also please understand that remission is not the end of the story. The family is still on a journey. The check-ins still matter. The kindness still matters. Year two of remission is just as worth showing up for as month two of treatment.

Dina
Mom of Max | Founder, Maxwell’s Toy Shoppe
Childhood Cancer Advocate 💛

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