Written and Photographed by Matthew Apgar
Frank Carpino is making the most of the hours he has left.
Carpino, a 12-year-old boy from Genoa, has never known a day without cancer. Burdened by multiple massive tumors, he only has enough energy to be awake a couple of hours each day.
With those hours, though, he's working to leave a lasting legacy.
When Frank was only weeks old, his mother, Kathrine, felt a nickle-sized lump on his back while breastfeeding. Since then, Frank, along with his parents Kathrine and Mike, and sisters Emily and Maria, has made numerous trips to Chicago, Minnesota, New York City, Houston, and Detroit in to try to remove or stop the growth of his multiple desmoid tumors, with limited success.
Frank was placed in hospice care with the Illinois-based company JourneyCare in December, and the Carpino family is preparing for what Kathrine calls his "journey to heaven."
Desmoid tumors, also known as aggressive fibromatosis, are rare growths that, while not necessarily life-threatening, can be dangerous and deadly if they grow and compress vital organs.
According to the Desmoid Tumor Research Foundation, about 900 people are diagnosed with desmoid tumors each year. Frank has multiple ones, mostly on his torso, his hip and his back.
Frank does his best to keep things light. He and registered nurse Jessica Harris gave one tumor on his right shoulder blade the nickname "Snapper,” because it itches, and Frank's fingers make a snapping noise when he tries to scratch it.
A YouTube star is born
Last summer, Frank told his parents he’d like to open a YouTube account, where he could share his love of video games with people all over the world under the Minecraft-inspired handle "The Enchanted Emerald Pickaxe.”
At first, his parents were not keen about the idea.
"I was nervous,” Kathrine said. “I didn't want his face and voice all over, because you know, you worry about comments and hurtful things, and his privacy.”
They had a change of heart one day on the way back from the Mayo Clinic in Rochester, Minnesota. Frank eagerly contacted his friend, Clay Sanders of Genoa, to come over and set up his computer to make this idea a reality.
The channel started off slowly at first, with a handful of friends and family members logging in to watch Frank play Minecraft and talk about gameplay.
In February, Frank released a special video to celebrate his 100th subscriber, and since then, his channel has exploded in popularity. Within a few days, word of mouth helped Frank's subscriber count grow well past his early goal of 1,000. He celebrated by publishing a special thank-you video, in which he showed his face to his fans for the first time.
Over the next two months, Frank's fan base rapidly expanded, reaching his new goal of 5,000 subscribers. The Gaming Goat, 229 E. Lincoln Highway, DeKalb, a business specializing in various games, helped Frank celebrate April 15 with a pizza party at which he and many friends played games on multiple consoles.
Frank's YouTube fan base now spans the globe. Many people have made anonymous donations and sent Frank gifts to help him make his dream of becoming a YouTube celebrity a reality. He's received posters, custom T-shirts, Minecraft paraphernalia, a Nintendo Switch, and much more.
Fans have also sent a new camera to make his video quality better, a professional-quality microphone, and a USB studio light.
Frank remains upbeat, despite everything he faces. He's quietly mature beyond his years. He might be having a difficult day. His tumors are causing him pain. Maybe he's saddened by the thought that he will reach heaven before the rest of his family.
You would never know it by talking to him, though.
"I think when you ask him 'How are you?', he thinks about it too much," mom Kathrine said. "He'll be thinking, 'I'm really sad today; I'm having a hard time with all this, but I don't want this person to feel sad for me and walk away and feel sad, so I'll just tell them I'm good. Then I tell them I'm good and they smile, but if I say I'm sad, they frown.' He feels like he brought them down."
Joy, on the other hand, is an emotion Frank can't hide. Boy Scout Troop 2 from Sycamore teamed up with Frank and Boy Scout Troop 71 in Genoa for an experience like no other: a ski trip at Cascades Mountain in Portage, Wisconsin. Sycamore Troop 2 committee member Ron Beaulieu contacted Adaptive Adventures of Elk Grove Village to arrange a special sled for Frank. On his first run downhill, Frank was accompanied by dozens of Boy Scouts, family members, and friends. The wind raked his face as snow flew up in his tracks. His smile stretched from ear to ear the entire descent.
For a moment, all the worries were forgotten, and everything was perfect. Frank was surrounded by the people he loves, people who love him.
"It meant everything to him," Kathrine said. "He has been missing this feeling of being free and keeping up with his friends and being his age."
"He feels like he's 12," she added. "He feels so much joy, I can see it all over his face. A lot of his smiles lately have just been for us, to try to make us happy, but today he's smiling for himself. We've been praying for that for him."
Upon completing his first descent, Frank immediately hopped back on the ski lift, ready for a dozen more runs.
"I think it's going to carry him through the rest of his journey," Katrine said. "It was really good timing, because he was starting to have a lot more sad times. It was getting harder for him to pick himself up. I think this was the best medicine today."
Some special days, however, Frank needs morphine to keep the pain at bay and enjoy being a kid.
At his pizza party at The Gaming Goat, his mom asked him how he was feeling, and if his energy was holding up. Frank looked up to her, and with a big smile on his face, he replied "One word mom – Morphine, morphine, morphine!" That is what it is there for, she said: The morphine helps him forget about the pain so that he can enjoy a typical day the way any child should.
Leaving a legacy
When Frank isn't busy making videos for his fans or experiencing a thrilling adventure, he often works with his JourneyCare nurses to leave behind memories for his closest friends and family.
A team of nurses, Child Life Specialists, have been spending time with Frank to help him create art projects that transform his ideas into reality. They have collaborated on multiple gifts, including a clay unicorn for his friend Abbie, a decorated jar for his grandmother, a clay dish for his father's tools, and a coffee mug for his mom with a personalized inscription which reads, "I will love you forever and eternity."
Frank and his mother also created a plaster model of their hands intertwined.
Over the past few months, Frank has been working on leaving a legacy. The videos he's making, combined with the memories he's creating are sure to remain in our hearts and in our minds long after Frank completes his journey.
"He wants to help people," Kathrine said. "It makes him feel good that he's helping people. Just to make someone smile is helping them."
*Editor's note: This story ran in the Daily Chronicle on May 29, 2017. Frank completed his journey shortly after, on June 8.
all images protected by ©