Why I involved my kids in oral cancer recovery

When I was diagnosed with stage IV squamous cell carcinoma of the tongue, a type of oral cancer, my husband and I tried to be as open and honest with our two children as possible.

At the time, Jeremy was 8 and Violet was 5, but we felt like they had a right to know. Besides, we couldn’t have hidden the fact that I was totally incapacitated, bald and tongueless even if we’d wanted to. So we gave them the facts in simple terms. We didn’t sugarcoat or share excessive details. And as my treatment progressed, we kept them informed and even included them in my care.

It was a big deal for them, and they still talk about it a lot. I’m convinced the way we handled it is what helped them stay so well-adjusted.

How we involved the children in my oral cancer treatment

Kids can handle a lot more than you think. What scares them is Mommy and Daddy whispering and sneaking around hiding things. Their imaginations and fears are usually much worse than reality. So we did our best never to leave them in the dark.

The kids were old enough when I was diagnosed to understand how serious it was, but still young enough to be scared and confused. The kid kit MD Anderson gave us helped a lot. It included a DVD that explains cancer, surgery, chemotherapy and radiation therapy from a child’s perspective. It was by kids and for kids, and was really cute and informative.

It also helped that I was in Houston for the really gruesome parts of my treatment (such as tongue surgery), but we openly included the children in my home care. They helped change my bandages, gave me food through my PEG tube, and even did my swallowing and neck exercises with me. We had a “party” when I cut off my hair (due to losing it from chemo) to make it less scary and sudden for them.

Violet took it all in stride and enjoyed playing Doc McStuffins while she flushed out my PEG tube. Jeremy got counseling at his school every week and checked out books on cancer from the library. He also rubbed my head every single day. Because in his mind, when I have hair, I’m healthy. And when I’m sick, it falls out. He still performs this ritual. And he can keep doing it as long as he needs to.

Staying connected in a different way

Being away from my kids for so long was one of the hardest parts of my cancer treatment. I had to relocate to Houston for six weeks of radiation therapy, so I missed Thanksgiving, my son’s ninth birthday, Christmas and my father-in-law’s funeral.

Today, I’m enjoying every minute I spend with my kids. My son and I run 5Ks together, and I became the leader of Violet’s Brownie troop this year. But even as life seems to be getting back to “normal,” I’m glad we made an effort to stay connected in a different way while I was undergoing treatment. Our children were an important part of my recovery team. That’s why I encourage other patients who are parents to include their kids, too.

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