All about Perspective – Josh’s Story

Josh and his father celebrating the completion of proton radiation.

When going through a hard time, many people hope that someday they’ll understand why it happened, or be able to see a positive side of the challenge that seemed “anything but” positive in the moment. 

Derrick, Antoinette, and Josh Barbour gained that immediate perspective during COVID-19 as Josh, 16, experienced cancer simultaneously with this global pandemic. They may still be waiting for the same clarity around Josh’s cancer diagnosis, but they’re appreciating the insights currently available to them for now! 

Anyone who has lived with or supported a loved one through cancer knows that the disease can quickly and easily make the patient feel like an outsider. Many people struggle to know the “right thing” to say to someone who has just received a life-threatening diagnosis, so they avoid any contact. Cancer, on its own, can cause fatigue, pain, confusion, and more – decreasing one’s energy or desire to go out or be with friends. And its treatments can inflict even harsher symptoms like hair loss, extreme nausea, loss of appetite, neuropathy, and gastric distress, among many others. Chemotherapy can weaken the immune system to the point where patients must live in isolation and wear a face mask when they must be around others. 

Josh started complaining about a pain in his side in early 2020, just a few weeks before “coronavirus” became common terminology around the world. Around the same time, his mom, Antoinette, learned she was expecting a third child. They both quickly became familiar with video visits with doctors, but soon realized that for their health needs, there was just no substitute for hands-on, in-person care. 

By June, Josh was finally able to visit a doctor’s office; right in time, as his side was still hurting, and the bump he had found continued to grow. When the wound that was created when Josh’s doctors lanced what they imagined to be a cyst never healed, they knew something more serious was behind the bump, so a biopsy and testing followed. The months went on, scans and testing continued, Josh plugged away at virtual school as a high school sophomore, and finally, in December, it was determined that he was living with an undefined and rare type of sarcoma. 

Josh at a cancer treatment center.

Josh began treatment in January 2021 and, as so many cancer patients do, he accumulated sessions upon sessions of chemotherapy infusions, filled electronic folders with scan images, amassed countless miles on the odometer to and from treatment, and learned an entirely new vocabulary of medical terminology. Also like most other cancer patients, Josh spent a lot of time in isolation and behind a mask. But, the difference was – his friends were all doing the same thing. 

Despite nearly every month of 2021 being full of chemo and radiation appointments, Josh kept logging on for virtual school, just like his classmates. He laughed with them through the moments when someone forgot to mute themself, got to know his classmates’ pets, and every now and then got called out for turning off his camera. He had good reason to do so when he was at the hospital, but many of his friends and peers didn’t even know he had cancer. They treated him just the same as anyone else – a refreshing way for a teenager to live with “the big C,” which can often be so alienating. 

While the recent pandemic may very well have delayed Josh’s diagnosis and treatment, the beautiful thing about it was that it allowed him to feel oddly “normal” during a very abnormal time – for himself, and for the rest of the world. He could attend virtual hang-outs with friends, he didn’t have to miss dances and concerts, and he wasn’t the only one stuck at home and wearing a mask. 

The pandemic slowed life down for the entire family, allowing them to hunker down together and connect in new ways during the months when they all needed extra love and support. When it was time for Josh to undergo proton therapy to deliver targeted treatment to his tumor, he and Derrick turned to Ulman House for lodging. With caregivers limited to one per patient to reduce the risk of COVID spread, there was no question over whether both parents or just one would accompany Josh at Ulman House; the decision was made for them. This allowed Antoinette to stay at home and give ample attention and care to Josh’s 8-year old sister, Autumn, and to new baby, Charlotte. 

Josh and Derrick made the most of their time at Ulman House, investing in relationships with fellow residents, and feeding them well during the time when volunteers were not allowed to prepare dinners onsite. Derrick filled the kitchen with soul food, and he and Josh fed their souls in the BoStrong Music Room, relaxing by making music together. 

Josh with new friends made at Ulman House.

From the moment he learned of his diagnosis, Josh kept a positive attitude. “I’m good, I got it, I’m gonna beat it,” he told his parents. He’s been able to maintain that sense of cool and normalcy in the midst of a global pandemic – because of it – and, wise beyond his years, we imagine Josh will uncover some of his cancer’s positives soon too. 

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