Lessons from a childhood cancer patient’s father

Just over three years ago, my son, Damon, now 12, was getting a hug from his mom when she noticed a lump on his left arm. She took him straight to an urgent care center. After an X-ray, they were sent to an emergency room.

That’s where they got the diagnosis: bone cancer. Damon was immediately transferred to a pediatric hospital, where we got a clear picture of what we were up against: osteosarcoma, a rare and aggressive a cancer that typically appears in children and adolescents.

The time since then has been a whirlwind. After treatments, doctors have twice declared there was no evidence of disease in Damon’s body. But both times the cancer returned a few months later. We’ve dealt with chemotherapy, limb-salvage surgery and later an amputation of his arm. We’re now waiting for a clinical trial to treat metastases to his lungs.

Obviously, our whole family has been through a lot during the past few years. Though it’s been tough, there are few things we’ve learned about fighting cancer along the way.

Be willing to include your child

Every child is different, but for Damon, not knowing what was happening was worse than knowing. When we first started our cancer journey, Damon’s mom and I were having hushed discussions and private meetings with his doctors. This scared him quite a bit. When we offered him the chance to be part of these conversations, he took it.

Having Damon involved in all the meetings and decisions hasn’t always been easy, but it has been better than the fear of the unknown. It’s also helped Damon mature into an amazing and amazingly resilient young man. When we learned we’d have to amputate, his mom and I cried. He just said, “I’d rather hug you with one arm than have you bury me with two.” I don’t really know or understand how he stays so pragmatic about all that’s happened, but including Damon in the conversations with doctors was clearly the right choice for our family.

Do your homework

Damon’s mom and I have worked hard to learn as much as we can about osteosarcoma in children.  We need to know what we are up against and how it can be treated.

That’s why it’s important to read all you can and write down your questions for the next visit with your doctor. MD Anderson’s doctors have been instrumental in educating us and telling us where to get more information. They’ve given us printouts or names of websites where we can conduct research.

Learning about Damon’s cancer has empowered us. For instance, when Damon’s pain became a problem, we were able to have a long conversation with his care team about the cause of his pain and treatment options. After some back and forth, we settled on a new medication that’s been a big help.

Ask the hospital for help

Having cancer, or watching your child go through it, is lonely. You feel you have to take on the world by yourself, but you don’t. Don’t be afraid to ask for help. It can come in many forms. You could get financial assistance, help with transportation or housing, or something else. Your hospital has a team of people who are there to offer support. Let them be there for you.

Keep a journal

Many times, Damon’s doctors have asked when he last had chemotherapy, or what the results of a recent blood test were. Having that information at your fingertips is a big help. That’s why we kept a journal and recommend others do, too.

Include all the dates for your doctor visits. Write down the results from the most recent round of tests. Log chemo dates and types. Having this information on hand has helped us on numerous occasions.

Cancer isn’t easy for anyone. It certainly hasn’t been for us. But by understanding what we’re facing, working together and staying positive, we’ve been able to manage our cancer journey. If anyone else takes this advice to heart, my hope is that they’ll have the same results.

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