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| Reason to Celebrate Discover why this Mom is shaving her head for St. Baldrick’s. By Amy Crelly
That year, Joey’s parents, Sharon and Rich, did everything they could to give Joey a “normal” birthday party. Sharon shows me family photos of the Sponge Bob piñata, the party favors, and Joey’s cake, which had to be “quickly wheeled out of his room and served to everyone but Joey,” she tells me. He was nauseous from chemotherapy and couldn’t take the smell of it. Joey had to endure five rounds of chemotherapy in just six months in order to defeat AML, the rare form of childhood cancer that attacked his little body when he was just three years old, but he beat it. Joey was declared in remission on March 21, 2006, a date which both of his parents recite to me from memory, in stereo. They’re quick to share another date with me too: March 21, 2011, “Our Golden Freedom Day,” they tell me, also in stereo, smiles of relief on their faces as they look first toward each other and then off into the distance, where you just know they’re picturing that day, waiting for it like kids await Christmas… “That will be the five-year mark,” Sharon explains. “We’re going to have a huge party that day!”
It was February 2006 and for weeks Joey complained of aches and pains. His teeth ached, his tummy ached. Sharon noticed he’d become unusually clingy with her. He was losing his appetite. She also noticed odd little bruises, but at first they looked like nothing more than the usual bumps and falls most toddlers take. (As if to illustrate her point, Joey and Robbie tumble off the couch while she tells me this, landing in a tangle of little boy arms and legs, giggling as they thud around on the floor, wrestling at our feet.) Soon after, the family was sniffling through “just a minor cold,” but Joey came down with a full-blown case of pneumonia. They took him to the hospital, and while he was there, the doctors raised some concerns. They wanted to run some blood tests. An oncologist called the house at ten that night with the news. “I don’t think either of us slept that night,” Sharon says. “I spent the night crying and watching Joey sleep.” Rich responded to the news by throwing himself into research. “He was on the computer all night,” Sharon recalls, arming the family with information, medical terms and treatment options, scouring the Internet and preparing for the fight that lay ahead of them. Rich and Sharon are grateful to have had an oncologist who told them not to pay attention to the odds and statistics they might hear, but Rich would say this: “It’s like winning the lottery… from hell.” At that point in their family’s life, Robbie was 1½ and Sharon was 33 weeks pregnant with Frankie. Between both sides of the family, and with two baby brothers (one on the way), they had high hopes—and a good chance—of finding a bone marrow match for Joey. When that didn’t happen, Sharon and Rich even considered conceiving again. Doctors explained to them how testing could allow them to select a transplant match, but the couple decided against it. They’re quick to explain that they understand and absolutely respect any parents who might choose that route, but for them, the process involved too many moral qualms. Joey began treatment at the UC Davis Medical Center in Sacramento. “We’re so grateful for the UC Davis Medical Center,” Sharon tells me. Rich nods emphatic agreement. “Our oncologist is wonderful!” In order to help Joey understand what was happening, his parents spoke to him in terms he could embrace, using characters from A Bug’s Life. Joey could think of the regular blood cells as the ants, the leukemia cells like the grasshoppers, and the chemo as his “warrior bug medicine…to kill the grasshoppers.” “It’s a family diagnosis,” they agree, and as they describe the exhausting, costly and heart-wrenching experiences they went through, the truth of that statement becomes vividly clear. After round two of chemo, and “right after Frankie was born,” a fungal infection took hold of Joey’s system. “Those were a long nine days,” Sharon recalls, as Joey’s condition came frighteningly close to fatal. Rich tells me that about 5% of kids who battle cancer are lost not to the cancer but to the side effects of current treatments. He breaks it down in the simplest of terms: “Chemo wipes out your immune system; you get sick.” Even today, Joey’s parents “keep tabs on his lungs,” monitoring “the remnants of the fungal infection.”
For support, the family has turned to The Keaton Raphael Memorial, a local organization founded in memory of Robyn Raphael’s son and dedicated to helping families diagnosed with cancer. “Robyn connects children and families,” Sharon tells me. She remembers thinking, when Joey was diagnosed, “I need to find someone—another mom—who has done this, who has been through this.” While Sharon never quite found that someone she was looking for, she did find Maria, a single mother of three whose son is still in treatment. “We had it before she did,” Sharon says, “but clinging to each other in the face of the unknown—It was really good for both of us.” Since then, Sharon has become that person—that other mom who has been there and gets it—and she remains just a phone call away for several moms like Maria. The Keaton Rafael Memorial also serves as the local host organizer for St. Baldrick’s celebrations happening this month. “It’s a phenomenal organization…” Sharon says. “The wonderful thing about St. Baldrick’s is that all of the money goes directly to childhood cancer research.” The Raimondos have seen two of Joey’s personal doctors receive funds raised by the event, so they know the money is getting exactly where it needs to go. Rich was a shavee at last year’s event. His team, Angels and Warriors, consisted of about 55 people drawn from different locations of the company he works for (Franklin Templeton Investments). Together they managed to raise an impressive $65,000. This year, Sharon will sacrifice her long, thick chestnut-colored waves. She decided to join forces with friends and fellow moms, Heather Stokhaug and Jennifer Rodacker, to form Team Bald Chicks. Their name says it all! Each of the three women is collecting pledges and going bald for the cause at the Sacramento event on the 14th. (You can support their team at www.StBaldricks.org.) Sharon’s hair is gorgeous, even swirled up in a loose bun (the standard mom ‘do for days at home chasing after the kids). “It’ll grow back,” she tells me, smiling and shrugging. “I mean, look at me! I have three kids!” she says. I watch her smile broaden as she watches the boys pile into their Daddy’s lap for a story, and I think to myself how stunning that kind of inner beauty is, that willingness to do something bold on behalf of what matters most to you.
“Bald Chick” teammate, Jennifer Rodacker, is shaving her head on behalf of her son, Tommy, who was diagnosed with a rare, aggressive brain cancer at only seven months and is still undergoing treatments. When it came time to describe Tommy’s treatment plan, the doctors had to admit to Jenny that with her son’s form of cancer, they could really only guess which course of action would result in his best chance of survival. That’s because not enough research has been done yet on Tommy’s particularly rare form of cancer. Events like St. Baldrick’s help raise the kind of research funds that directly translate into better protocols for patients like Tommy. “This is what it’s all about,” Rich tells me, extra-impassioned. “There has to be a better way!” Pediatric cancers remain the leading cause of death among children, yet over the past few decades, doctors and researchers have managed to lower the childhood cancer mortality rate by nearly fifty percent! And every year, new research breakthroughs allow for more improvements. The time is now to discover better ways of helping our kids, ways that will save more lives, ways that might even make chemo and radiation therapy and all their terrible side effects—from brain and heart damage to infertility and hearing loss—things of the past. It may still be some years away, and the scientific community still needs our support to get there, but it’s a kind of “Golden Freedom Day” I can now visualize with Rich and Sharon. And when we reach that day, I imagine every family in the world gathering for the hugest party ever.
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