I lost my son: What I’ve learned about cancer care for kids since

A dad carrying on his son’s legacy reflects on Childhood Cancer Awareness Month

Ethan & Brian having lunch in June of 2020, a few weeks before Ethan was diagnosed with cancer. (Brian Perry, KPRC/Click2Houston.com)

September is National Childhood Cancer Awareness Month. Every day in the U.S., 47 kids are diagnosed with cancer.

On July 26, 2020, my 12-year-old son, Ethan, was one of those 47 kids that was diagnosed on that day. Ethan had T-cell lymphoblastic lymphoma, a rare form of aggressive non-Hodgkin’s lymphoma. He immediately began treatment and went through an intense chemotherapy regimen.

Sadly, after five months, he experienced a relapse. The fight had turned into a war and the doctors were using every available drug in the battle. The cancer was too aggressive, and the available treatments were not effective as we had hoped they would be.

Despite their efforts, they would not be able to cure him. On March 25, 2021, Ethan became an angel. My beautiful boy’s life was cut short because of this disease. Our family was devastated.

Carrying on a legacy

It has now been over two years since Ethan’s passing. My wife, Ethan’s older brother and I are learning to live without him.

In his memory, we founded a nonprofit called “Ethan’s Ohana.” Our mission is to ensure that no child or family is left behind or forgotten throughout their journey with pediatric cancer. We will inspire acts of kindness towards others and create a community of support and understanding that nurtures hope, healing, and resilience.

One way we assist pediatric cancer patients is by collecting Rubik’s Cubes and delivering them to local children’s hospitals. When Ethan was in treatment, he was given a cube and within the span of a few hours, he had figured out all the algorithms and solved it.

Doctors and nurses would come in his room, and he would have them mix it up and then solve it right in front of them. We realized that the cube was not only keeping him occupied but was a great tool to help with his hand coordination and mental acuity. These cubes hold a special significance for us, and we believe they will bring joy to the children we serve.

What the stats say

According to the Children’s Oncology Group, in the United States, approximately 80% of children diagnosed with cancer will be cured.

Sadly, my son was not in that 80%. Cancer is the leading cause of death by disease among American children, claiming the lives of approximately 1,800 precious youngsters each year.

Even those who survive may face lifelong side effects, including damage to the heart, lungs, brain, nerves, kidneys, thyroid gland, or reproductive organs. They can also experience issues like delayed cognitive development, growth problems, and even infertility.

The Pediatric Cancer Research Foundation reports that the Federal Government allocates a mere 4% of its annual cancer research budget to childhood cancer, equating to less than $3 per child. As a parent who lost a child to cancer, I find this allocation deeply inadequate.

Statistics from the American Cancer Society have shown that childhood cancer rates have increased by 24% in the last four decades, and yet, only a dozen drugs have been approved for pediatric use compared to hundreds for adults. We must do more. Children and their doctors should not have to rely on outdated treatments.

How you can help

How can you make a difference? Reach out to your elected representatives in Congress and advocate for increased funding for pediatric cancer research.

Support local nonprofits dedicated to assisting cancer families in your community, either through donations or volunteering.

These organizations provide essential services, from toys for the kids, to support groups and practical assistance like meal vouchers, toiletries, a bed to sleep on, and even paying for parking fees at the hospitals.

Parking in the Houston Medical center is $19 per day, and that can add up quickly. All these services alleviate the burden on parents and patients.

I want to express my gratitude to all the donors and volunteers who have supported families like ours. Your contributions are invaluable. Remember, our children are more precious than gold.

Show your support for Childhood Cancer Awareness by wearing a gold ribbon during September. Most importantly, cherish every moment with your children, letting them know how much you love them every day.

To read more about Ethan’s story, click on the links below.

How Chick-fil-A biscuits are bringing comfort to grieving father

KPRC 2 family joins Ethan’s Ohana to support B.I.G. Love Cancer Care

Ethan is more precious than gold: How this valuable message will help others

Ethan’s Fight: The story one brave boy wanted us to tell

About the Author:

Brian has been at KPRC 2 for over 26 years and works behind the scenes. He spends most of his time working on the KPRC 2+ Livestream.