This is our first 4th of July off treatment. I have been holding the date on the calendar for weeks, half-expecting it to feel different than it does.

It does feel different. Not in the loud, fireworks-finale way I might have imagined a year ago. In a quieter way. The kind of different that takes a few minutes to register.

What the 4th has looked like for our family

Year 1, post-diagnosis

My son was a few months into treatment. He was neutropenic. The plan for the 4th was: stay home, no crowds, no contact with anyone outside the immediate family, no sparklers (immune system risk), early bedtime so the fireworks in the distance would not scare him too much.

We watched a small parade on TV. We grilled hot dogs. We did not see any other people. My husband and I sat on the porch after the kids were asleep and listened to other people's fireworks through the air.

Year 2, in maintenance

We were a little less restricted. My son's counts were more stable. We invited two close families over for a backyard picnic. Everyone tested for any illness before they came. We kept the gathering small.

My son did not hold a sparkler that year either. He watched my husband light one in the yard while he stood at the back door. He was happy. He was also a little wistful in a way I noticed and did not say anything about.

Year 3, this year

He is off active treatment. He still has follow-up appointments. He still gets labs. He still has a port that has not yet been removed. He is medically a survivor and physically a kid who can stand in a backyard and hold a sparkler.

Tonight we are doing it for real. A picnic. Other families. Watermelon. A small bottle of bubbles. Sparklers in the dusk. He is going to stay up later than he should.

What I have learned about marking holidays as a cancer family

The holiday is what we make of it

There is no version of the 4th of July that is better than another for a cancer family. The year inside, the year on the porch, the year in the backyard, are all real celebrations. The form changes. The love does not.

When my son was on chemo, our 4th was the inside version. We made it lovely. There were red, white, and blue pancakes. There was a flag in a small vase on the table. There was the small joy of being all together, safely, in the only place we could be.

This year's version is louder. It is not better. It is just the next chapter.

What we hold while we celebrate

I will be thinking about other cancer families today. The families who are spending the 4th in a hospital because their child is inpatient with a fever. The families who are too neutropenic to host. The families who lost a child to pediatric cancer and are marking another summer holiday without them.

Survivor families do not get to celebrate without remembering. The remembering is part of the celebration. I think it makes the holding of the sparkler matter more, not less.

What I want my children to see

I want my son to remember that the 4th of July is a holiday his family celebrated through every version of his treatment. The year inside. The year on the porch. The year in the backyard. I want him to know that we did not skip the holiday. We just shaped it to what was possible.

I want our daughter to remember the same thing. She was so small for so much of this. The 4th of July she is going to remember is the one where her brother held a sparkler in the grass and she was right next to him.

A note for cancer families spending today inside

If you are a cancer family this 4th and the version of the holiday that works for you involves staying home, that is a real celebration. The version inside counts. The hot dogs on the grill in your own backyard count. The small flag on the kitchen table counts.

You are not missing the holiday. You are doing the holiday in the form that loves your family best right now. Next year may look different. This year is enough.

A note for cancer families in the hospital today

If you are reading this from an inpatient room today, please know that the rest of us are thinking of you. There are pediatric oncology floors all over Chicagoland today that have a few extra families on them because of holiday-weekend fevers and unexpected admissions.

I have spent a 4th in a hospital. The nurses do their best. The cafeteria does their best. Someone brings around a small American flag pin and your kid puts it on their hospital gown. You take a picture. The picture, when you look at it later, is one of the most tender pictures of the year.

A note for cancer families who lost a child this year, or any year

I do not know what to say except that we are thinking of you today. The fourth of July weekends are some of the hardest. We hold you.

A note for the people who love a cancer family

If you are reading this and you know a family with a child in treatment, the 4th is a good day to send a small message. Not an invitation. Not a question. A simple, "Thinking of your family today." That is enough.

Happy 4th of July from Maxwell's Toy Box. Whatever shape the holiday takes for your family this year, we are with you.

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

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