STORIES OF MAKING LIFE BETTER FOR KIDS WITH CANCER
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It was October 2016 when Becky was doing her Saturday morning bath routine with Zuri and her younger sister. She noticed how Zuri’s stomach didn’t look normal. It was disproportionately large for what it should be for a 5-year-old.
Becky’s intuition said something was wrong, so she gently pushed on Zuri’s tummy and asked if she could feel any pain. Zuri, in her typical care-free way, expressed no pain.
An hour later, Zuri was no longer the strong, happy kid. She was complaining of stomach pains and crying. That was the cue to head to the emergency room.
The doctors took the immediate steps of an x-ray, then an ultrasound, and finally a CT scan which showed a mass tumor surrounding Zuri's left kidney. Four days later, a biopsy was scheduled and the diagnosis was confirmed: Wilms Tumor, a common cancer in children that starts in the kidneys.
Wilms tumors often become quite large before they are noticed, and the doctors believe that Becky pressing on Zuri’s tummy moved the tumor so that she could finally feel it. Zuri's cancer had spread to her lungs making it a stage IV diagnosis. About 10% of all Wilms tumors are stage IV so it's no wonder that "our little fighter" is how Becky refers to Zuri.
How do you tell a 5 year old they have cancer?
Becky shared that Zuri was a trooper throughout it all. Initially, from the outside, no one knew she was a sick child. But she was and she didn’t understand why she was going to the doctor all the time.
“You’re sick in a different way,” Becky would explain to her. “You don’t have a cough or cold, but you’ve got to go to the doctor to get better.”
Just like many kids in her shoes, Zuri quickly came to learn about chemo, taking care of her “button” [chemo port] and knowing her way around a hospital – although, that, too changed for Zuri through her treatment.
The family had moved from Northern Virginia and was temporarily living in Roanoke with family while Zuri's dad started a new job in Richmond. It was in the midst of the family's transition that Zuri was diagnosis and started treatment at a local hospital. Zuri's parents wondered if she should finish treatment before making the move to Richmond, but her medical team encouraged them to continue with their move, knowing they’d be in good hands at the Children’s Hospital of Richmond at VCU.
Keeping a Routine
Becky was determined to not let going to clinic for a day disrupt the routine and normalcy she worked hard to maintain for Zuri, her younger sister, and her now baby brother. It wasn’t ever a surprise for Katie, ASK's child life therapist, or the nurses to find the family in their room, with the lights out, for their designated nap time.
But there are moments for children with cancer that simply are not normal and can’t be stopped no matter how much a mom may try. For Becky, those moments included the agony of seeing Zuri struggle with losing her hair, handfuls at a time, and hearing about classmates who weren’t always kind.
“They don’t want to be my friend” was something Becky often heard from Zuri who struggled to be a “normal” kid.
Friends Who Understand
Crafting and talking about fun times while at clinic was how it all started for Zuri and Katie’s friendship. For a little girl known to be shy, she warmed up quickly to Katie, ASK’s child life therapist.
“It makes it easy,” is how Becky describes the amenities and care the family receives at clinic. “I don’t know how normal clinic would be without ASK and Katie there… Katie is entertaining, talkative and jokes with Zuri.”
But, Zuri wasn’t so sure of her new friend when Katie invited her to ASK’s summer camp. She was scared and worried, in part because she thought camp was out in the wilderness but also thinking thoughts no 6 year old should ever have: “people will laugh at me” and “no one will like me.”
It didn’t take Zuri long to find several new best friends at ASK summer camp, including Lhea, Olivia and Campbell. In addition to seeing familiar faces from the clinic, like Katie and Tom David, Zuri left that week knowing that there are other kids like her – some bald, some wearing a face mask, some needing to take a breaks throughout the day. Everyone there understanding, as everyone has been there at some point.
Summer camp may be over, but we’re so happy to see Zuri’s big smile and to hear her adorable giggle as she catches up with her new friends at other ASK programs.