A Dad Shares His Son’s Cancer Story Part 2: Survivorship

by Dan Butler
May 31, 2019

Editor’s Note: In part one, we heard from Dan Butler, whose son, Sullivan, had a whirlwind that started with back pain and ended up with a cancer diagnosis. Now, here’s part two, where Dan shares the story of how they continue to move forward.

Within 48 hours, Sullivan had gone from a carefree fourth grader to a paraplegic with stage four brain cancer. Cancer treatments for kids don’t always work – and even when they do, they can cause severe, life altering health problems.

As the days went on, some of Sullivan’s symptoms improved. His double vision went away, he showed better fine motor control with both hands, and his personality began to resurface. Eventually he began to ask his mom and I gut wrenching questions about his condition.

“Do I have cancer?”

Yes.

“Am I going to walk again?”

I don’t know.

“Why did this happen to me?”

I don’t know.

“When are things going to go back to the way they were before?”

I don’t think they will.

A website banner inviting readers to learn more about pediatric cancer survivors by clicking through.

The Long-Term Effects of Treatments on Children

He would be subjected to the maximum amount of radiation and chemotherapy that could be given to children. It was another harsh lesson in pediatric cancer treatment. Just three weeks prior I had to fight to get a CT scan because his doctors didn’t want to expose him to radiation, now they are going to fire 10 million times that amount directly into his brain.

Radiation will decrease Sullivan’s IQ long-term. He’ll have memory problems and difficulty learning. Scoliosis is possible. Radiation can cause other types of cancer. He will lose his hair, and most of it won’t come back.

His endocrine system will be damaged, resulting in infertility, growth problems, and inability to make hormones on his own.

One of the chemotherapy drugs causes hearing loss. Another chemo causes heart, lung, and kidney problems.

So that was it. 30 rounds of radiation and four rounds of high-dose chemotherapy with stem cell recovery. All in-patient. If everything went as planned Sully would be done in six months.

But was this treatment going to work?

Medulloblastoma almost always responds to treatment the first time. But it’s a sneaky cancer and can come back. That’s why we do MRIs and spinal taps every three months.

And if he relapses?

“It would not be good.”

Sometimes kids develop severe complications – in Sullivan’s case, his legs didn’t work. Having brain cancer was bad enough, but now he had to learn to live as a paraplegic. Things like running to the curb for an ice cream truck now required his wheelchair or an adult to carry him.

The Long Road Ahead for Sullivan

Fortunately, after months of physical therapy, Sullivan could walk again. He still has fatigue and balance issues. He works very hard in school to compensate for his permanent brain damage. One of the drugs he took caused hearing loss. Another stunted his growth. He’s hoping with the right medicine, he’ll grow enough to ride any roller coaster he wants. Sully wants to become a civil engineer and design roller coasters – and his height will be the ride’s height requirement.

Last week, Sully learned he will most likely not be able to have children of his own. He hadn’t thought much about having kids yet, but he’s sad it won’t be an option someday.

I have met many other pediatric cancer families and heard their stories – you may be among them. Some survivors live relatively normal lives. Others are so restricted by treatment effects they become reliant on caregivers for the rest of their lives. In fact, by the time survivors of childhood cancer reach age 50, more than 99% will have a chronic health problem and 96% will have severe or life-threatening conditions. And there are those whose lives are unfortunately cut short by the deadliest disease killer of children in the US.

Right now, researchers can’t cure all the cancers kids get. It seems to me that you don’t beat cancer, you fight it to a stalemate. Doctors cut it, burn it, poison it, and the family picks up the pieces, and tries to be thankful for whatever time is left.

I celebrate Sullivan’s current status; No Evidence of Disease. I’m hopeful that research stays a step ahead of what he needs in the future. Our family lives with the fear of relapse, something for which no effective treatment exists. And this is why I see every day as Father’s Day – I treasure each moment we have with our boys.

The St. Baldrick’s Foundation is dedicated to funding research that not only saves lives, but helps survivors thrive. They fund researchers working on everything from reducing late effects by improving current therapies to helping survivors get the best possible care.

Your support of St. Baldrick’s in honor of Father’s Day this month, which is also Cancer Survivors Month, would mean so much to families like mine.

Research funded by St. Baldrick’s can literally mean the difference between life and death for kids diagnosed with cancer, like Sully.

Read Part 1 of Dan’s story here.

A website banner inviting readers to learn more about pediatric cancer survivors by clicking through.

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