Four months after the 2017 Parkway Run & Walk, Om passed away. We will keep fighting against childhood cancer until every child like Om who is diagnosed with the disease survives and thrives.
In April 2015, 10-year-old Om came home from school with a headache every day for a week. During the weekend though, his headache became so intense that his parents, Ketul and Krupa, called the paramedics to their home in New Jersey. After a CT scan and MRI, the family learned the terrible news: Om had a brain tumor.
Om was admitted to his local hospital in New Jersey and underwent a surgical biopsy. However, neuropathologists at the hospital were unsure what type of tumor the boy had, so they recommended the family get a second opinion. The family — including Om — did their own research by speaking with oncologists, friends and relatives in person and online.
“We had gotten a lot of opinions, and everyone kept coming up with one place — CHOP,” says Ketul, Om’s dad. “And a name – Dr. Peter Phillips.” A quick online search revealed Peter C. Phillips, MD, was an attending physician at the Cancer Center at Children’s Hospital of Philadelphia. They made a call to CHOP.
When they arrived at Children’s Hospital in June 2016, Dr. Phillips happened to be on call for new patients, so the family was able to meet the pediatric neuro-oncologist they had heard so much about. Dr. Phillips worked with Om’s doctors in New Jersey to get the tumor samples from his surgical biopsy sent to Children’s Hospital to be evaluated by neuropathologists at CHOP and Johns Hopkins Hospital.
Diagnosis and treatment
After reviewing the tissue samples, doctors had a diagnosis: oligodendroglioma.
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Donate“Dr. Phillips said it was a rare brain tumor in kids,” Om says. “It was a little scary. It’s very rare, but I’m the one that got it.”
Dr. Phillips worked with radiation oncologist Robert Lustig, MD, to develop a customized treatment plan for Om that would combine chemotherapy and proton radiation therapy. Once Om’s radiation therapy and chemotherapy were completed, an MRI showed that Om’s tumor appeared to be gone. His family celebrated by taking Om’s Make-a-Wish trip to visit his grandfather’s home in India.
During the trip, the family visited a shrine high up in the Himalayas and Ketul recalls how amazed he was at his son’s endless strength. “Om had to walk three miles up a hill,” Ketul says, “and he had no problem.”
Months after the trip, in October 2016, the family learned that Om’s tumor was back. It was a huge setback, but Om was fearless.
Ketul remembered his son’s reaction: “The first thing he told the doctor was, ‘I beat it one time, I’m going to go beat it again. I’m going to be a two-time cancer survivor.’”
But Om now admits how difficult that time was. “That was really emotional for me. It was hard to learn that it came back.”
Om started a new chemotherapy treatment in December 2016 — an intense combination of three drugs. This was harder on him than his earlier treatments, but, his first MRI during this new chemotherapy regime showed that his tumor was shrinking.
Om’s most recent MRI from May 2017 looks so good that it’s difficult to know if there is any tumor left. Om is doing very well.
After everything Om has been through and the toll treatment has taken on his body, his dad says, “he is just as original as he ever was” before the tumor diagnosis. He’s smart as a whip, and takes responsibility to understand his disease and his treatment.
“Om is the kind of guy who likes to take care of himself,” says Ketul. “He takes his own medicine. He pays attention to his treatment plan. He educates himself.”
One thing that has impressed Om’s parents is that their son has perspective: despite what’s happened to him, he knows he’s still luckier than many children he sees at the Hospital.
Om says his support system at home and at the Hospital keeps him strong. He says his social worker Zoe is one of his best friends, and Dr. Phillips has become somewhat of a grandfather figure.
Om’s parents say it is because CHOP has done such a good job of taking care of all the little details — like paperwork, phone calls and scheduling — that they’ve been able to just be with their son when he needs them most. “He’s still a mama’s boy,” says Krupa.
Om is a Patient Ambassador for the 2017 Parkway Run & Walk, CHOP’s largest fundraiser for pediatric cancer research and care. The goal of the Parkway Run is to create a future where no child is sidelined by a cancer diagnosis.