Today, more or less, is the one-year mark since my son's last chemo dose.

I have been thinking, all week, about what this year has been. What changed. What did not change. What surprised us. What I wish I had known going in.

If you are about to enter your own first year off treatment, or you are in the middle of it, this is the version I am writing for you. It is also a small letter to myself, one year in.

What changed

The calendar

Active treatment had a calendar that ran our entire family life. Clinic days. Lab days. Steroid weeks. Inpatient stays. Maintenance check-ins. Survivorship visits.

One year in, the calendar looks like a regular family calendar. Preschool. Library days. Weekend plans. A few medical appointments. Most weeks have no clinic on them at all.

I still pause when I see an open week. I am still surprised. The body has not entirely caught up to the calendar.

My sleep

I am sleeping better. Not perfectly. Better. Most nights I sleep through. I used to wake at 3 a.m. with my heart pounding for no clear reason. That happens less now.

Our daughter

Our daughter is more relaxed than she was a year ago. She asks fewer questions about her brother's hospital visits. She is starting to live a childhood that is not organized around her sibling's treatment. It is good. It also makes me sad sometimes, in a way that does not entirely make sense.

My marriage

Better. Different. We talk more. We have small rituals that survived the active treatment years and now have room to grow. We have hard conversations more easily. We laugh more.

My friendships

Some are deeper than they were a year ago. Some I have let soften. I am being more intentional. I am trying to maintain fewer friendships better, instead of many friendships shallowly.

My job

I am back at near-full-time. I am better at it than I was during treatment. I am also more tired than I admit. The juggling of full-time work plus survivor parenting is its own kind of work.

My son's body

His hair is back. His weight is steady. His energy is normal. He runs. He climbs. He gets winded sometimes in a way he did not before, and we are watching that. His port is still in his chest, currently not accessed. We do not yet have a removal date.

His personality

Bigger. Louder. Funnier. The version of him that was suppressed by years of treatment is reasserting itself. He is opinionated about food. He is dramatic about bedtime. He has a sense of humor that I forgot he had. It is one of the best parts of this year.

What did not change

Scan anxiety

The four weeks before every scan are still hard. They are slightly less hard than they were in active treatment. They have not gone away.

The vigilance

I still notice every bruise. I still take his temperature when I suspect a fever even when there is no fever. I still check his lymph nodes when he is sleeping sometimes. The vigilance has softened. It has not lifted.

The cancer mom identity

I am still a cancer mom. I always will be. Some days that identity is in the foreground. Some days it is in the background. It is never gone.

The medical team in my phone

I have not deleted any of the on-call numbers. I do not think I ever will.

The survivor's vigilance our friends and family have

Our parents and in-laws still hold their breath a little. Our close friends still ask, with the same gentle phrasing, how the most recent appointment went. The community that walked with us through treatment is still walking with us. The vigilance has been distributed across all of them.

What surprised me

The grief

I did not expect grief. I expected relief. I have had relief. I have also had a lot of grief. Grief for the years we lost. Grief for the childhood my son did not get to have. Grief for the version of our family that exited the treatment years and the version we are building now, which is different.

I did not see this coming. I have made room for it.

The community

I did not expect to feel as supported, one year in, as we do. The cancer mom friends I made during treatment are still the closest friends I have. The medical team still feels like family. The neighbors and the church and the daycare are all still here. I expected some of them to drift. They have not.

The joy

I did not expect to feel as much joy as I do. Small joys. Backyard joys. Morning pancake joys. Watching my son climb a tree joys. The joy is bigger than I would have predicted a year ago. The joy is, I think, the reward for the vigilance not having lifted entirely.

The way my husband and I love each other now

Different. Deeper. More forgiving. We have been through something. The love has settled into a shape I am grateful for.

How much I am still tired

Almost a year in, I am still tired. Not in the active-treatment way. In the way that comes from three and a half years of running on a particular kind of cortisol. The body is taking its time. I am giving it the time.

What I would tell myself, going in

If I could write a letter to the version of myself who walked out of the hospital after the last chemo dose, here is what I would say.

It is going to be a slower softening than you imagine. The relief will not arrive in a wave. It will arrive in small intermittent flashes that you will sometimes miss.

You will be more tired than you expected for longer than you expected. Build for it.

You will grieve. Make room. Do not push through it.

Your child will be more himself than he has been in years. Watch closely. Write things down.

Your marriage is going to be different. Different is okay. Different is sometimes better.

Your friendships will rearrange a little. Stay close to the ones who walked with you. Let the others drift gently.

You will find joy you forgot was possible. Notice it. Receive it. Pass it along where you can.

You are going to be okay. The whole family is going to be okay. The year that comes is going to be quieter than the years that came before, and it is going to be one of the best years you have had in a long time.

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

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