Gus’ Journey Through Cancer

Gus, my 4-year-old son, was chasing me down the stairs on our way to the basement for our early morning workout. This particular morning, Gus jumped from the stairs onto the floor and took an extra step. Something seemed off, but he didn’t complain after he landed, so we moved on with our day.

That afternoon, Gus complained about pain in his leg when his mom, Heidi, picked him up from preschool. But by that evening, he was running around again.

The following morning, he was limping, though not complaining, but by night he had a low-grade fever and intense leg pain.

DIAGNOSIS

Rally Kid Gus in the hospital

The next morning, Heidi took Gus to Urgent Care, and after an X-ray, they were immediately sent to the Children’s Hospital.

After 24 long hours and some preliminary imaging, Heidi and I were told by a seasoned diagnostic radiologist that he was 98% sure Gus had a bacterial infection in his leg.

The radiologist wanted an orthopedic surgeon to perform the surgery. The resident orthopedic surgeon did not like what he saw on the MRI and encouraged us to do a biopsy to be sure this was a bacterial infection – and not something much more serious.

The resident came up after the surgery and explained the biopsy contained tissue and blood. It was looking more and more like it was a tumor growing in Gus’ leg, more specifically on his femur.

Friday, November 16, 2018 was the worst day of my life. Gus was diagnosed with cancer – more specifically, a sarcoma. But the team wasn’t sure what exact type yet. Agonizingly, we were told to come back on Wednesday for the final diagnosis.

On Wednesday, we learned Gus had Ewing Sarcoma.

Rally Kid Gus with his family in the hospital

LEARNING ALL I COULD

I hit the ground running, trying to understand my son’s disease, diagnosis, treatment plan, surgery options, and long-term survival.

Among all the friends, family, and colleagues that stepped in to help, one particular friend recommended I reach out to Dean Crowe, the founder of the Rally Foundation for Childhood Cancer Research.

Dean and I hit it off immediately. She encouraged me to keep doing all the things I was doing and reaffirmed that we, as parents, are our children’s best advocates. As I have learned, at times, we are their only true advocates.

Dean helped introduce me to doctors and scientists to give Gus his best fighting chance. Because that is what Dean does. Every day. In our home, she is “Saint Dean.”

DECISION MADE

In January, Heidi and I decided to transfer Gus to a New York City hospital to save his leg and finish his treatment. Although it was a scary trip, the hospital offered opportunities that we could not pass up such as a clinical trial, sequencing of tumor, and treatment of complex cases with good outcomes. They were also very patient with all my questions and never treated me with condescension or arrogance.

Rally Kid Gus with his dad Tim in the hospital

Digging into the treatment plan and surgery plan for Gus’ leg was sobering, but Heidi and I both knew that this was the place for Gus and for our family to carry out our pediatric cancer odyssey.

Rally is here to help, from diagnosis to survivorship. DONATE NOW so Rally can continue to help families like Gus’.

To read part two of this three part series, click here.