Honored Kid

Alex Butler

Age 19
Alex Butler Kid Photo

Location

Apex, NC, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

December 2017

Status

No evidence of disease

Treated At

Massachusetts General Hospital Cancer Center Duke Children's Hospital & Health Center

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My Story

Thank you for supporting our son Alex and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick's Foundation, you're supporting research to give all kids with cancer a better chance for a cure.

On December 20, 2017 our whole world came to a jarring halt. It started out not unlike any other day. I went to work and Ellie went to school. Irene took Alex to WakeMed for an MRI. It wasn't unusual for us. Alex had stopped growing and developing between ages 13 and 14 and he was being tested every which way since then to try and figure out what was going on. The MRI was a new one but no one expected anything to come of it. A few hours after Irene and Alex got home she got the call from WakeMed.

"We didn't expect to find anything Mrs. Butler but unfortunately we've detected a mass in Alex's brain. We've been in contact with the pediatric brain tumor unit at Duke University Medical Center and they agree that you need to get Alex to their emergency room as soon as possible."

The world beyond our family ceased to exist as far as we were concerned in those next hours and days..., and months. Over the coming months we'd spend Christmas in the hospital, Alex would undergo painful tests, brain surgery, months of chemotherapy, a life-threatening infection, multiple inpatient hospital stays measured in weeks not days and nearly a month and a half of daily craniospinal proton radiation therapy up in Boston.

We are grateful that Alex now has no evidence of disease and that he's back in school. We are proud of him, how he handled himself going through treatment and being away from his friends at school. We are proud of how hard he worked after treatment ended to catch up and complete his Junior year studies over the summer so he could begin his Senior year on time. And we are excited for him continue on to college next year.

Alex is a super smart, thoughtful and caring 18 year-old. He is a walking Wikipedia. He loves world history and the natural sciences. He is fascinated by both Norwegian and Polynesian culture and mythology. He is fascinated by corvidology, the study of birds in the crow family (i.e. - crows, magpies, ravens and blue jays). These birds are thought to be as intelligent as Chimpanzees. Most recently he has been interested in the San Diego Zoo's efforts to preserve the highly endangered Hawaiian crow or 'Alala and reintroduce them to the wild. Alex plans to pursue this interest in college as a Biology major.

When we hear of a child "beating cancer" we rejoice..., and we should. But what most don't know is that the fight is rarely ever over. Periodic MRI's will be a fact of life for the foreseeable future. There are long-lasting, often lifelong, residual negative effects from the cancer itself and/or the treatments to eradicate the cancer. Chemotherapy comes with the elevated risk of developing secondary cancers. Applying radiation to the brain can negatively affect executive motor functioning and short-term memory. Alex's tumors all but destroyed his pituitary and pineal glands. He'll be on multiple hormone replacement therapies for the remainder of his life. We give him daily growth hormone injections in hopes that he'll at least grow a few more inches within the next year or two. 

The effects of pediatric cancer don't go away when treatment ends. Alex is actually one of the "lucky" ones. His after-effects from pediatric cancer, although challenging, are manageable. For many other kids and their families the lifelong effects of pediatric cancer are debilitating.

The St. Baldrick's Foundation seeks not only to fund research to cure childhood cancers but also research to provide effective treatment protocols that result in improved survivor quality of life. Alex's prognosis is promising. The prognosis for far too many children is not so promising. Together we can help the St. Baldrick's Foundation bring more promise to these children and their families affected by this insidious disease.

The Childhood Cancer Ripple Effect

Who's Honoring Me

Help kids take childhood back from cancer — support lifesaving cancer research today.

Children who are fighting or have fought cancer inspire others to be part of the Foundation's mission — to support the most promising research to find cures for childhood cancers and give survivors long and healthy lives.

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