Patient Stories

Comfort in a Whirlwind

Comfort in a Whirlwind

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Isaac’s Proton Therapy for Medulloblastoma

Isaac is like a lot of boys his age; he loves basketball, plays video games and enjoys creating structures with Legos®. He follows the Golden State Warriors and makes his own music videos on the social media platform, musical.ly. But Isaac has a hobby that’s pretty rare for an 11 year old: he, along with his younger sister Ivy, make care packages for kids with cancer. He packs them carefully and thoughtfully, with an attention that stems from his own experience – when he was five, Isaac was diagnosed with medulloblastoma. As he navigates his way through a world after treatment, he carries his time at the Northwestern Medicine Chicago Proton Center with him.

In June 2011, Isaac started experiencing intense headaches. Initially, his mom April gave him acetaminophen and chalked it up to a hectic weekend. But then, he started screaming out in church – arching his back, holding his chin. It was startling, to say the least. Just as quickly as it arrived, the episode passed. But then it happened again, and kept happening. April took Isaac to his pediatrician who suggested icing and heating, thinking it might be a torn muscle in his neck. When it didn’t subside, Isaac’s pediatrician referred the family to a chiropractor. Frustrated that the physicians weren’t able to see Isaac’s headaches or spasms, it was on the third day when Isaac began to spasm that April swooped him up, carried him to the car and into the chiropractor’s office saying simply “this is what it’s like, help me.”

The chiropractor, who became a close family friend, immediately sent April and Isaac to the emergency room for a scan, which in turn revealed a mass. A day and a half later, Isaac had surgery to remove a brain tumor. Isaac would begin radiation a month later.

Even before Isaac had been formally diagnosed, the care team arranged for an oncologist and radiologist to speak with April. They also arranged for the family to visit the Chicago Proton Center, where they met radiation oncologist, John Han-Chih Chang, MD. “When we met Isaac, he was a very shy boy,” Dr. Chang recalls. “Understandably so, given his circumstances. I was so glad that as he became comfortable with us and the treatment, he opened up, and his wonderful, giving personality shined through.”

“We just fell in love with Dr. Chang,” April remembers. “Isaac was an early patient at the center – the 171st graduate [of around 3,080 today] – and they told us how fortunate we were that we had the facility right here.”

After going through Isaac’s history, Dr. Chang formulated a plan for Isaac’s next steps. “His medulloblastoma was fairly localized to the back and lower part of the brain, causing hydrocephalus (obstruction of the cerebrospinal fluid circulation) when he initially presented,” Dr. Chang remembers. “By the time I saw him, he had had excellent surgery with complete removal of the visualized tumor. Given the moderate aggressiveness of the tumor, we proceeded with the standard protocol for medulloblastoma – chemotherapy and radiation for six weeks, followed by nearly a year’s worth of chemotherapy given every three to four weeks.”

From there, April and her family focused on making the treatment process as tolerable as possible for Isaac, as he went through chemotherapy, 30 rounds of proton radiation and rehabilitation. The family had a routine; small things they did every day to normalize the experience. They made a paper chain with 30 rings – one for every day of treatment – and Isaac got to rip a link every day. They took daily pictures of Isaac holding up fingers to symbolize what day he was on. Moreover, the family found a willing and able ally in the Chicago Proton Center staff.

“I think it was only supposed to be on Fridays, but somehow Isaac got to choose something from the treasure chest every day and they were nice to oblige,” April says. “They had a ton of Beanie Babies in there so every day he chose a Beanie Baby and they became fixtures in our countdown pictures. It was fun, lighthearted – even though you’re going through this really awful experience.”

“We adored the Chicago Proton Center. Throughout the rest of our journey there was nothing quite like it. It was like family,” April continues. “Isaac hated getting sedated, he would freak out before he fell asleep every day, but other than that, he went every morning with a smile on his face.” Sometimes, in order to help kids stay still during treatment, sedation is recommended.

The family has stayed close to the staff, from the front desk to both of Isaac’s nurses. They visit Dr. Chang at least once a year just to say thank you.

“It was really this comfort amongst the crazy,” April remembers. “There was a comfort there that I wasn’t expecting and I couldn’t find anywhere else.”

The side effects of cancer treatment are pervasive, and even with a treatment like proton therapy – which generally results in minor, less frequent and less severe side effects than standard radiation therapy, particularly in pediatric patients – Isaac lives with persistent side effects daily. While proton therapy is intended to reduce side effects, skin irritation, tiredness and hair loss at the radiation site can still occur.

Still, Isaac is positive, and deeply involved. As a family, they wanted to do something to give back, and when Isaac finished treatment in August 2012, they put their heads together and decided on care packages. Specifically, they created Camp Out From Cancer care packages, assembled with a camping theme to let kids and their families “camp out” away from everything that’s going on. The items they send – an indoor pop-up play tent, a flashlight, glow bracelet, reusable backpacks, s’mores – are easily reused or guilt-free items to toss out.

The family delivered the care packages on Isaac’s second year anniversary date, hoping to deliver four or five a year. Quickly, their neighbors, friends and families wanted to help and now Camp Out From Cancer is an official nonprofit. They have gifted 600 packages – all picked out and packed by Isaac and Ivy – to kids fighting cancer across the U.S.

In 2016, Isaac was chosen to be a St. Baldrick’s ambassador. St Baldrick’s chooses five ambassadors every year to represent the statistics of childhood cancer: one child is someone who has passed away, three are children going through treatment and one is a survivor. Isaac is the survivor.

“We always feel like we’re still in this fight, so it was new for me to sit back and see that he was the face of the survivor,” April says. “He was the face that parents like me, six years ago, saw as their source of hope that their kid would one day get there. That was a cool experience for us.”

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