Push through. And when you do, celebrate every victory.
Those words have morphed into a mantra the Shaw family has leaned on and embodied after their daughter Jenny was diagnosed with a stage IV Wilms tumor, just before her seventh birthday in August 2017.
Her mom, Scotesha Shaw, had noticed two long bumps protruding from Jenny’s abdomen during bath time one evening. She said they looked like caterpillars.
“Mm-mm,” Jenny objected, poking both pointer fingers into her stomach where the bumps once stuck out. “Like breakfast sausages.”
She and her husband debated the severity of the situation briefly, Scotesha recalled, and then rushed from their Greece home to Strong Memorial Hospital’s emergency department. Four hours and a myriad of tests, scans and blood draws later, two doctors strolled over to their hospital bed.
Very casually, they shared their theory that Jenny might have cancer.
“I look at Scotesha, she looks at me, and it’s like all the air literally goes out of the room. Time just stopped,” Mike Shaw, Jenny’s father, said.
Several days later, the Shaws received an official diagnosis from Golisano Children’s Hospital.
The tumor, the most common form of kidney cancer seen in children, had metastasized to Jenny’s liver and would end up requiring chemotherapy, radiation and the surgical removal of one of Jenny’s kidneys and part of her liver.
Immediately, they took on a positive attitude and looked forward. They peppered their oncologist, Dr. Suzie Noronha, with questions about surgery, chemotherapy, radiation, and wasted no time planning how they’d get Jenny through it all.
But while her parents were busy trying to process what that diagnosis meant and how their lives had been permanently altered, Noronha said Jenny was already thinking about ways to help others going through the same thing.
Read more about Jenny: A child’s cancer makes her family thankful for everything
“It really seemed to be a spontaneous, organic desire on her part to want to help other people — and that’s a unique thing,” Noronha said. “For a child to be so proactive about it herself is quite remarkable.”
Jenny’s idea, her dad explained, centers around long-term hospital stays. The simple comforts of home — a cozy blanket, favorite toys, a full-size toothbrush — don’t really exist in the hospital. And in missing those things herself, the idea came to put together care bags for other kids filled with common goods often taken for granted and forgotten about until they aren’t readily available.
Spending extensive time in the hospital while Jenny received treatment, the Shaws felt heartbroken for kids whose parents either rotated in or were unable to be there at all.
During those first few days of treatment, Mike Shaw remembered his bewilderment as he watched a nurse make her rounds and update patient charts, all while bouncing a toddler on her hip. He thought it was odd she’d brought her son to work.
Scotesha corrected him — that little boy was a patient. He’d been there for days.
Many families, they learned, travel from hours away to receive treatment at Golisano. And not every parent can take extended leave from work to stay in the hospital, so nurses and hospital staff sometimes take on an inadvertent surrogate role.
“It was kids who were there by themselves — that’s where the idea came from,” she said. The gift bags became a way for them all to push through Jenny’s treatment, almost in defiance of the gravity of her diagnosis, and to help other families enduring the same unpredictable, grim journey.
“We are just one family, unfortunately, in a sea of many families that are facing or dealing with childhood cancer,” Mike Shaw said.
Since Jenny received her diagnosis a year and a half ago, she has already donated more than 200 care bags to Golisano patients and raised just over $70,000 on a GoFundMe campaign to continue assembling and delivering bags to patients directly.
In April 2018, Jenny completed her treatment and doctors, with optimistic caution, declared her cancer-free. A year later, she and her family are celebrating every clear scan and cherishing each day that Jenny continues to live a life free of cancer, medications and hospitals.
Two weeks ago, jumping on a trampoline in their backyard on an unusually warm April afternoon, it’s difficult to imagine how sick Jenny was just a year ago. Arms crossed, her dad watched closely as she bounced up and down, getting breathless from both the effort and the giggles. After a few minutes, he offered up a hand and helped her back down to the ground.
“We know how fortunate we’ve been and that this is not always the circumstance for every child that faces cancer,” Mike Shaw said, giving Jenny’s shoulder a squeeze. “We’ve learned to celebrate every small victory.”
How to get involved:
Check out Jenny’s GoFundMe: gofundme.com/teamjennybeancarebags
Attend the Team Jenny Bean Lemonade Tea Party Fundraiser
Sunday, May 5 from 2 p.m. to 5 p.m.
The Penthouse at One East Ave. in downtown Rochester
Tickets $20 each, sold online at teamjennybean.com.
—- DEMOCRAT AND CHRONICLE