Survivorship

Editor’s Note: Brooke is an Ambassador and Honored Kid who just graduated from Stanford University. As Cancer Survivors Month continues on the St. Baldrick’s Blog, we’re letting her tell the story of how she got to this day in her own words.

On Thursday, September 24, 2015, my friends were finishing up their first week of junior year at Stanford. I was lying in a hospital bed, watching as my brother’s stem cells were infused into my body, replacing the bone marrow that had turned against me.

On Friday, September 25, my friends celebrated their first weekend back together at school. I had a grand mal seizure.

When I was diagnosed with acute myeloid leukemia at the end of my sophomore year of college, I knew that I was going to have a very different college experience from my peers. I had no idea how different it would be.

I had the impression that I would either die or I would live and return to my previous life. I had a high-risk form of leukemia that did not respond to my first round of chemotherapy, and at first it seemed that the death option was more likely.

But when I got into remission on a salvage round of chemotherapy and proceeded to my bone marrow transplant, I was hopeful that a return to “normal life” was possible.

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Sunday, June 2 is National Cancer Survivors Day, and we at St. Baldrick’s have dubbed the entire month of June “Cancer Survivors Month.” Our focus for the month ahead will be to bring awareness to the fact that surviving childhood cancers is just the first step in a lifelong journey for many survivors.

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What jumps out after talking with Shane Callaghan? His positivity. In a recent interview with Shane and his dad, Casey, Shane took center stage with his upbeat, can-do attitude – in spite of a lifetime worth of medical setbacks for a kid who is only 14. Shane has faced multiple treatments for osteosarcoma, which was first diagnosed in October 2015.

The following July, Shane was declared cancer-free. But the cancer in his left leg returned in March 2018. Following his relapse, chemotherapy led to an infection that severely damaged his kidneys. While his kidneys are better, they only function at 50% and are unable to handle heavy doses of chemo. On April 1, 2019, Shane’s left leg was amputated to remove the cancer and ultimately save his life.

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Editor’s Note: Today on the St. Baldrick’s blog, we’ve decided to hand the microphone over to Dan Butler, whose son, Sullivan, was diagnosed with cancer in 2016, at the age of 10. June is Cancer Survivors Month at St. Baldrick’s, and the first Father’s Day after Sullivan’s diagnosis and treatment was especially meaningful for Dan.

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Editor’s Note: Throughout the month of June, Cancer Survivors Month, we are hearing from and about those who have been diagnosed with pediatric cancers, and learning about the long-term impact and late effects of cancer treatments. The month of June also marks four years since the focus of this blog post, Brooke, was first diagnosed.

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When you’re a kid with cancer, you’re not thinking about long-term impacts of treatment: you just want to get better. Parents, too, are rightly focused on a desire to put cancer behind the family and get on with life.

While some childhood cancers still have no cure, overall survival rates have climbed into a figure that’s around 80%, so more attention is being paid to those long-term impacts. What if the treatment you get today can lead to all sorts of unwanted side effects later? And, if you survive as a child, as you move into adolescence and then adulthood, what can be done to ensure you have the best possible quality of life?

Dr. John Gates, a survivor now in his 40s, has worked tirelessly to help treat kids with cancer, and to ensure that those who do survive know how to face future challenges head on.

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Honored Kid Matthias was diagnosed with retinoblastoma when he was just 3 months old, leaving him blind. But that hasn’t stopped him. Today, Matthias is a childhood cancer survivor and an independent 10-year-old who is learning to navigate the world without sight. As his mom, Katie, shares, he’s one brave kid.

Matthias was just a baby when doctors had to remove his eyes to save his life. Since then, he’s learned to read braille and use a cane to help him get around. Photo by Jen Sherrick Photography

When Matthias lost his eyes to bilateral retinoblastoma nine years ago, we never could have imagined how happy and full his life would be. He is a hiker, traveler, and adventurer who has visited 23 states and two countries. He loves sports, especially hockey. He is obsessed with learning about weather, and he is a good student. He is a loyal friend and a fierce advocate for pediatric cancer research and disability rights. He has shaved his head five times for St. Baldrick’s, traveled to Washington D.C. twice to talk to legislators about the STAR Act and is a guest speaker for a disability awareness organization.

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For childhood cancer survivors, treatment helps them to survive, but often that survival comes at a cost. But what are these costs? And how big is the problem? That’s what St. Baldrick’s Fellow Dr. Nickhill Bhakta wanted to figure out. And as it turns out, that data could be a lifesaver.

St. Baldrick’s Fellow Dr. Nickhill Bhakta works at his desk in St. Jude Children’s Research Hospital. With a portion of the grant supported by the St. Baldrick’s Morgan and Friends Fund, he developed a special statistical tool to help capture the true volume and complexity of chronic health conditions faced by childhood cancer survivors because of the long-term consequences of their treatment — something that hadn’t been done before. Photos courtesy of St. Jude Children’s Research Hospital

Over the years, researchers have discovered that because of their treatment, childhood cancer survivors can be at risk of everything from heart attacks to secondary cancers to stroke. That’s helpful to know, but Dr. Bhakta recognized that something was missing from the data that was available on survivorship. It wasn’t painting the complete picture. It was just capturing the first big health scare, instead of following the survivor through the multitude of chronic, often recurring conditions.

The scope simply wasn’t big enough.

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Honored Kid Zoe was diagnosed with acute myeloid leukemia when she was a teenager. Now, almost four years after finishing treatment and getting the news that the cancer was gone, Zoe is taking a look at what she’s learned during her cancer — and cancer-free — journey.

Honored Kid Zoe Wagner is now 19 years old and has been cancer free for four years.

The anticipation of upcoming milestones and the overall exploratory nature of the teenage years make the age of 15 a common time to be naïve – and naive I was. Life was simple and my carefree spirit allowed me to believe it would always be that way. This trusting nature also led me to ignore the severity of the disease symptoms I was having for months. As these symptoms got worse, my uncomplicated mind created uncomplicated explanations for the way I was feeling. I told myself that I was always tired because I was a teenager, and that this exhaustion was the cause of my daily headaches. I blamed my newly heavy periods on ordinary hormonal changes, bruising on being clumsy, unusually pale skin on it simply not being sunny enough out, and weight loss on, well, it happens. It wasn’t until red needle-prick like dots appeared all over my legs that I requested to go to the doctor.

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Rebecca smiles with her 2-year-old daughter, Sophie.

Childhood cancer had already taken so many things from Rebecca Morrow. During treatment, her hair dropped out twice. She missed her entire seventh-grade year. Her social life evaporated. The treatment devastated her developing body. Sometimes when treatment got really tough, her drive to survive crumbled.

So, when the doctors told a teenage Rebecca that she’d likely never have children of her own, she shrugged it off.

Rebecca had already lost so much to childhood cancer. What was one more thing?

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