Vinny Desautels got his first mohawk before his second birthday. In kindergarten he used a temporary gel to morph his hair from its natural shade of wheat-blond to a shocking blue.
At age 5, he resolved to grow it out for children battling cancer, letting his yellow locks grow for nearly two years until they tumbled well past his slender shoulders.
This month, Vinny’s parents have been checking the 7-year-old’s pillow for left-behind strands of his now-magenta coif, dreading the day that the anticipated hair loss from his chemotherapy becomes a reality.
Vinny knows it’s a matter of time.
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“We wanted to do something with my hair before it falls out because it’s going to fall out with the chemo,” Vinny said of his new hairdo. “It falls out, and then the chemo kills the cancer.”
Vinny, the son of hairstylist Amanda Azevedo and combat veteran Jason Desautels, was diagnosed with a rare bone cancer called Ewing’s sarcoma earlier this month – just weeks after mailing 13 inches of his hair to a nonprofit group in Ohio, where it will be made into wigs for children with cancer.
In photos taken of Vinny after his hair donation in April, his right eye is noticeably puffy. At the time, his parents thought it was allergies and took him to a specialist. When Vinny developed a bump on his right hip that was causing him pain, they began to worry the two issues were related.
After an emergency department visit, a bone marrow biopsy, and an agonizing week of waiting for oncologists at Harvard University to analyze Vinny’s scans, the Roseville couple got the sobering news: Their son had stage 4 cancer in his hip, on the bones encircling his right eye, and in 15 percent of his bone marrow.
“It’s just a pretty messed up, ironic situation,” his mother said.
Since Vinny was an infant, he’s had a penchant for kindness. When dressed as the Norse god Thor for Halloween last year, he picked out a foam hammer instead of a plastic one to ensure he wouldn’t hurt anyone.
He dreams of being a farmer who spends his days caring for animals.
So when the second-grader said he wanted to grow his hair out for Wigs for Kids after watching a video on the need for donations, his mother wasn’t surprised.
“I want my children to be able to express themselves,” she said. “He wanted long hair; I introduced the facts of donating it, and he was all on board. It just makes me proud.”
Ewing’s sarcoma is a rare condition – diagnosed in about 200 children and young adults each year. Doctors have given the chemotherapy a 50-50 chance of working.
Vinny has undergone two rounds of induction therapy at Sutter’s Anderson Lucchetti Women’s and Children’s Center since he stopped attending school two weeks ago. Hospital workers gave him a necklace threaded with more than 30 “courage beads,” each one representing an injection, scan or other procedure he’s gotten through so far.
“This is all new to him,” said Desautels about the hospital visits. “He went from ‘I get shots once in a while’ to ‘I’m in a bunch of camera machines.’ ”
After his first round of chemotherapy, Vinny had a difficult time keeping food down but is doing better now. He still suffers from fatigue, headaches, knee pain and stomach troubles, his parents said.
He’s back home and has returned to his regular habits of collecting Pokémon cards, playing with the family dog and making rude noises at his 12-year-old brother Jake.
Vinny’s teacher has been visiting their Roseville apartment two or three times a week to make sure he has the homework he needs to finish the school year. Maintaining a sense of normalcy and discipline during treatment is part of the family’s strategy for keeping spirits up, Desautels said.
“You can’t just be a bum,” the boys’ father said. “Life goes on. (Vinny) is going to go to third grade. We want him to be a productive member of society someday, and if we pause, he won’t be.”
The family is likely to go through another six months to one year of chemotherapy, depending on how Vinny’s tumors respond. In August Azevedo will deliver the son she’s carrying, whom they plan to name William, an event that both Vinny and Jake are ecstatic about.
The pregnancy has made an already difficult situation more complicated for the young couple. Azevedo must refrain from helping Vinny with certain chemotherapy-related tasks in order to protect the fetus from toxins.
Azevedo has stopped working and has been turning to friends and family for help with the boys as Desautels returns to his job at a hardware supply company.
They’re still opening emails and care packages daily from people who have read Vinny’s story in global media outlets. The GoFundMe page Victory for Vinny has raised more than $450,000 since it launched in early May. The family is no longer asking for financial assistance, but is directing any donations to other local families battling cancer.
The shock of Vinny’s diagnosis and the widespread attention that followed is still fresh, his parents said, but they are slowly finding ways to cope.
“It’s terrifying, but as long as you don’t let him think it’s terrifying, we’re good,” Desautels said. “You have the demeanor where even if it’s a huge deal, you act like it’s a daily routine. No matter how big the task at hand, no matter how gargantuan the challenge of getting through it, you do what needs to be done.”
When Azevedo is having a hard time coping, she just looks in on Vinny while he’s sleeping or holds him close, and that brings on a wave of calmness, she said.
“We’re sitting here saying we’ll be the ones to lift him up, but I think it’s going to be the other way around sometimes.”