Erin Kasdin 2018-07-17 14:57:34
Diane Alvey sits in a small, sterile room. The air conditioning is blasting against the Florida heat, yet her hands are slick with sweat. She wipes them against her jeans again and again, but the moisture returns. Her heart beats so loudly she’s certain passing strangers can hear it. She recites Scripture softly, to herself, in an effort to pace her breathing.
“It’s like this every three months,” she writes on a Facebook post. “One day of pure emotional torture tucked into 89 really productive, ‘normal’, blissfully happy, and extremely grateful ones.”
It was less than two years ago that Diane and her husband, Eddie, canceled plans to go out of town last-minute due to a hurricane in Tallahassee giving them a rare morning to relax. They lingered in bed, their 4-year-old son, Will, jumping up and down between them, when Diane noticed something. “I said [to my husband] there’s something about Will’s right leg that looks different.”
Several days later the Alveys sat silently in a hospital room in Orlando. It was Labor Day weekend, 2016. A group of six doctors filed in and shut the door. They stood in their white coats, shoulder-to-shoulder in the small room. Then one reached out her hand, “I’m Dr. Kelly and this is my oncology team.”
Cancer hadn’t been on Diane’s radar. “I knew it happened to children, but it wouldn’t happen to my child,” she says.
Will had a biopsy four days later, on his 5th birthday, and in September, 2016, was diagnosed with Ewing Sarcoma, a cancer of the bone and soft tissue that almost exclusively affects children.
Worldwide, a child is diagnosed with cancer every two minutes. Most drugs used to treat them are made for adults, and often developed for entirely different cancers. So, while survival rates have been on the rise, children face health repercussions due to the aggressive nature of the treatments. But only 4% of U.S. federal funding is allocated to research on cancers specific to childhood.
“I think one of the biggest misconceptions is that we have plenty of treatments available and we don’t,” says Missy Elward, a volunteer event coordinator for the St. Baldrick’s Foundation.
To date, only three drugs have been FDA-approved to specifically treat children with cancer. In contrast, the National Cancer Institute lists 77 drugs currently approved to treat adults with non-Hodgkin’s lymphoma.
Because children diagnosed with cancer are treated with medications developed for adults, they experience extremely severe side effects and often develop late effects—effects of the treatment that don’t show up for years but that can be as serious as the initial diagnoses. A recent study shows that because of the treatments they had as kids, by the time they’re 45, more than 95% of survivors of childhood cancer will have a chronic health problem, and 80% will have severe or life-threatening conditions.
St. Baldrick’s Foundation aims to change that. The non-profit organizes Brave the Shave events all around the world, where participants raise money to have their heads shaved. The shave is symbolic; a gesture of solidarity with the children, who lose their hair as just one of many side effects of their treatment.
“I shave my head for the kids because it shows them that they’re not braving this on their own,” says Jeanne Diehl of the Sebastian Lions Club in Sebastian, Florida.
For the past four years the Sebastian club has fielded a team of Lions willing to shave their heads for the event. Ron Black, Sebastian Lions club president, estimates they’ve raised nearly US$30,000 for St. Baldrick’s over the past four years. “By partnering with an organization like St. Baldrick’s, we can raise the necessary funds to eradicate the various childhood cancers like leukemia, lymphoma and all that,” says Black.
While there are many organizations that support families affected by childhood cancer, St. Baldrick’s Foundation uses the money it raises exclusively to fund research. And in addition to finding cures, much of the research is focused on preventing the lifelong damage that results from surgeries, radiation, and chemotherapies given while young bodies and brains are just developing.
“With childhood cancer research we’re focusing on the child. We’re not taking an adult medication and giving them half the dose because they’re half the size of an adult,” says Allison Sutton, Content Strategist with St. Baldrick’s. “We’re making specific protocols just for their bodies and their makeup and how they are put together internally.”
The Alveys understand how important it is to fund research. “If we don’t have research for our children, our children will not survive. That is the bottom line,” says Diane. Will endured many side effects from his treatments, including stunted growth in the affected leg, and mouth sores that caused him to lose his teeth. But he bounced back after every setback. “It changed us more than it changed him,” says Diane. “He’s been so strong.”
The family goes to Brave the Shave events whenever they have them in their area. Because Will has battled cancer, they are considered an “honored family.” Honored families get a grand entrance to the event, and the kids get to go up on stage and help shave heads, dance, or just watch as the hair comes off.
Children who have lost their battles are also honored. For the Alveys, good news for Will is often tempered by sobering news about the children they’ve gotten to know by belonging to the same horrible club. “Their children become your children,” says Diane. As these children are remembered, there are tears. “Will gets sad,” says Diane. But after, with a remarkable resilience, Will smiles at the crowd. He wields the electric shaver. And he dances.
Today, they wait for the big news. It’s Will’s 1-year scan. For the past year he has been off of chemotherapy with no evidence of disease (NED). He gets a scan every three months and will continue to do so for the next four years. Each time, Diane is wracked with the possibility that she will hear news that her son’s cancer has returned. “It can always come back,” she says. “His whole life, it can come back. So, he’s never safe.”
But Diane and her family try not to think about that in between scans. Instead, they take any excuse to celebrate. “We celebrate everything,” she says. After his diagnosis she took him everywhere he wanted to go and, later, they celebrated his graduation from pre-kindergarten with a big dinner and a cap and gown. “I tell myself, if this is my child’s last day, then he is going to have the best day ever,” says Diane.
Today, May 14, is her husband’s birthday. She considered moving the scan to a different day, but he refused. “What better birthday present,” he told her, “than to get a clear scan.” He was remaining positive.
Eddie has been a fierce advocate for creating awareness about childhood cancer. After Will was diagnosed, he had a Dodge Charger outfitted with a custom paint job with the slogan “Charge against childhood cancer.” He drives it everywhere. “We’re going to find the cure, but it’s going to take time and money and investment in our children, in our future,” says Diane.
In the waiting room, they finally get the news. Will’s scan is clear. He is officially one-year NED.
Diane can breathe again. She can pack up the anxious thoughts, stow them away where they always go, tucked away, out of sight for the next three months. For right now, for this moment, she can be happy.
The family celebrates.
LIONS INTERNATIONAL AND ST. BALDRICK’S SHARE AN ORIGIN STORY
St. Baldrick’s is a global organization founded by a group of businessmen looking to give back to their communities. Sound familiar? Like Melvin Jones did in 1917, in 1999 Tim Kenny issued a challenge to his colleagues: How will you give back in exchange for your good fortune in business? They decided to shave their heads to raise money for kids with cancer. Nearly 20 years later, St. Baldrick’s has funded more than US$234 million in grants, funding more childhood cancer research grants than any organization except the U.S. government.
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Strong Willed
http://digital.lionmagazine.org/article/Strong+Willed/3132643/511165/article.html