When his son developed a persistent cough and heavy breathing, John Will assumed Benny had COVID. After all, it was January of 2022. Spikes of the pandemic virus were still rampaging across the country. The last thing John thought he'd be facing was his child's cancer diagnosis.
"Benny was drowsy and lethargic. He couldn’t keep up with his neighborhood friends on his bike," the Charlottesville father explains. "But he kept testing negative, so we decided to take him to the pediatrician."
That led to an abnormal chest X-ray and an immediate referral to UVA Children's.
A Child's Cancer Diagnosis
Benny and his parents arrived at UVA Health January 6, a Thursday evening. They had a blood cancer diagnosis by Sunday. Benny, then age 11, had t-cell lymphoblastic lymphoma. The family was in shock.
Their first question to the pediatric blood cancer specialists and ICU (intensive care unit) team was: Where should we go for treatment?
It turns out, they didn't have to go very far. "They explained to us that care for this type of cancer is one that UVA Children's treats regularly. And Benny's treatment would be the same here as it would at any Children’s Oncology Group-affiliated health system in North America," John says. "Then an ICU charge nurse reassured us that this was the place to be."
A year to the date of learning of his child's cancer, John wrote the following reflection. He hopes it helps other parents navigate a child's cancer diagnosis.
In John’s Words – Father of 12-Year-Old with Lymphoma
“The pessimist sees difficulty in every opportunity. The optimist sees opportunity in every difficulty.” --Winston Churchill
Benny told me that quote today. It seemed apropos considering what we’ve been through in the last year. He heard that quote in his theology course, and it was really lovely to see him moved enough by that quote to share it with me.
Today is one year to the day since he was diagnosed with t-cell lymphoblastic lymphoma. He’s been hospitalized twice, anesthetized over a dozen times, been accessed for infusions more times than I care to count, and taken thousands (literally) of pills to date for his treatment.
And he’s not out of the woods.
We are fortunate for him to be in remission. But that doesn’t mean that his course of treatment is done. He will continue to receive maintenance chemotherapy for the next 16 months. Maintenance chemotherapy treatment is a substantial improvement over the intensive chemotherapy courses that he had last year. But it’s no small thing.
Return to School After a Year of Cancer Treatment
Being in maintenance has afforded Benny the opportunity to finally return to school last week for the first time since his diagnosis. He was so ready to reunite with his friends and to resume his scholastics at a more rigorous level. He did very well with his tutoring thanks to some amazing teachers, but it was certainly isolating.
Last year was a year of devastating lows sprinkled with a few silver linings. Among the lows were the diagnosis, obviously, dropping out of his school, fighting off COVID one time for Benny, three (!) times in the house, losing so much muscle mass that Benny developed contractions in his lower extremities, and not being able to go more than an hour and a half away from our home.
Among the silver linings were his remission, the amazing team of world-class healthcare providers at UVA Children's, his tutors, the non-profit infrastructure that has been built out to support families during times like these, but most importantly, our social support of friends and family.
A Child's Cancer Diagnosis Changes Everything
But you're not alone. We're here every step.
Pediatric Cancer: 'Burden Too Heavy to Carry Alone'
Pediatric cancer is a burden too heavy to carry alone, and so we’ve turned to family and friends many times over the last 12 months to get by. Because of the support our family received, I’ve been able to keep my job.
We’ve been able to get Benny to all of his many, many clinical appointments. We’ve had many meals brought to us, laundry washed and folded, and our house cleaned too, all to take our minds off of a few normal responsibilities.
Our kids were watched countless times so that we could attend to Benny’s needs. We’ve had help shouldering the financial burden of astronomical healthcare costs.
Finding Gratitude in the Darkest Moments
I’ve chosen a few words that I’m focusing on this year: patience, continue, through, and opportunity. We’ve got a long ways to go, so we must be patient. We’re not out of the woods or through the valley yet, and the only way to go is through. Every difficult thing is an opportunity.
And so we continue to fight, but we are still not alone.
We're incredibly grateful for all the support we received on this journey. It means more than anyone can ever know. For any parent who finds themselves on this journey after a child's cancer diagnosis, may you always find something to be thankful for, even in your toughest, darkest moments.