Griffin’s Story: Conquering Fear

Every time Jill arrived at the hospital for her 8-year-old son Griffin’s chemotherapy treatment, she posted signs and drawings on the blank hospital room walls. One sign hung above Griffin’s bed and his IV pole: “Griffin Strong.” it said. This is one of the mottos that Griffin and his family have carried with them since the beginning of Griffin’s journey with Ewing sarcoma.

After over a year of chemotherapy treatments, surgery on his pelvis, high fevers and infections, Griffin finally wrapped up his final chemotherapy session in winter 2016. They packed up his posters for what will hopefully be the last time.

Jill describes Griffin as “all boy”—from baseball to golf, he loves sports and running around. So when, in February of 2015, Griffin began limping and grabbed at his thigh constantly, she and Kurt, Griffin’s father, knew something was wrong with their energetic child. Then, one night, Kurt says Griffin’s pain was too agonizing.

After seven hours of countless scans and X-rays at the doctor’s office, Kurt received a devastating phone call: A baseball-sized tumor was embedded in Griffin’s pelvis. Jill remembers Kurt pointing at Griffin and shaking his head as he was on the phone with the doctor.

“He didn’t even need to say anything,” says Jill. “I just knew. Nothing [was] going to be the same now.”

A CT scan and a biopsy confirmed that the mass was Ewing sarcoma, a type of bone cancer that occurs most often in and around the bones and typically affects children and young adults. Griffin immediately began treatment.

Part of Griffin’s treatment protocol involved chemotherapy infusions of six types of drugs, one being a trial treatment. Each treatment session for Griffin started with a terrifying needle insertion in his chest to access his port. The first time that the nurses accessed his port, it took nearly an hour because he was so afraid of the needles.

Then, during the first twelve weeks of chemotherapy treatments, Griffin started to see his hair on his pillow.

“He loved his hair,” says Jill. “He used to rock a side sweep… I had to talk him into shaving his head.”

Along with a shaved head, Griffin had a scar across his side from the surgery to remove the tumor after the chemotherapy had shrunk it to about the size of a stick of gum. This was hopeful news for Griffin’s family, as doctors initially thought Griffin would need an amputation to fully remove the tumor.

“Childhood cancer works overtime to destroy families. It does to children what even strong adults crumble beneath,” says Jill.

In September 2015, the family received news that the tumor site was clean.

Griffin completed twenty-six weeks of post-surgery chemotherapy.

A little over two years later and Griffin has no evidence of disease and has his next set of scans soon. Along with playing sports again, his hair has grown back and he’s back to styling it before he goes out for the day.

Griffin says God, his mom, and his dad help him to be brave, along with his nurses, who helped him master his port accesses. He has some advice for other kids going through cancer just like him. True to the motto he has kept with him through it all, he says, “Stay strong. You can do it.”

How donors like you are impacting Ewing sarcoma research

The answers to Ewing sarcoma causes could be locked in a database holding 1,600 iPhones’ worth of genomic data.

And thanks to a gift from a Children’s Cancer Research Fund donor, scientists can unlock and analyze the data more quickly, potentially discovering the genetic markers that lead to this deadly childhood cancer.

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