“Having a child with cancer is very isolating, but at that moment, we did not feel alone.” All-Star Kayla’s mom, Julia, on receiving assistance from Pinky Swear.
Kayla’s family found their greatest comfort in moments of normalcy. Preparing meals together. Sharing laughter that flows naturally when the family of four is together.
It was those moments that helped the three-year-old’s family through the darkest times following her Acute Myeloid Leukemia (AML) diagnosis in November of 2024.
The toddler’s diagnosis was complicated further because she was born with Down syndrome.
Kayla’s mom, Julia, said they were made aware that having Down syndrome increased their daughter’s risk of developing leukemia after a scare in January of 2024 when labs showed her blood counts were low. They could not find cancer cells at the time, so they chalked it up to a virus, and she was sent home.
“I can’t remember if the doctors shared that with us, or if I read it somewhere, but after that, it was always at the back of my mind,” Julia said.
In August of 2024, Kayla and her brother both contracted E. coli, and Kayla was admitted to the hospital. Because of the earlier scare, Julia was nervous.
It was after the oncology appointment that they received the news.
“When they told me that now it was in fact cancer, I was pretty devastated and heartbroken,” Julia said. “It felt big and overwhelming, and they told us right away that we needed to stay at the hospital. It was the day before Thanksgiving. I felt sad for Kayla. It was so unfair that she now had to deal with another health problem. I wished it could have been me instead.”
They prepared themselves for the treatment journey, which included six rounds of intense chemotherapy. Kayla’s treatment plan was different from other children with leukemia because of her Down syndrome.
At the time, Kayla’s dad, TJ, worked for UPS and Julia loved her job as a sign language interpreter. Since Kayla was diagnosed around the holidays, TJ was working extra hours. For Julia, December and January are slower months, so she stayed at the hospital full-time with Kayla.
Kayla’s chemo side effects started taking a toll one month into treatment. She was not eating and drinking well, since the treatment gives food a metallic taste. A feeding tube was placed through her nose. She hated being tethered to an IV pole.
Her development was also impacted. Julia and TJ watched as other parents of children with Down syndrome witnessed them taking their first steps or heading to preschool. Kayla was missing all of it.
On top of the physical reality of Kayla’s diagnosis, the financial reality began to set in. Bills had to be paid, food costs were higher, and they were spending more on gas traveling back and forth to the hospital. Plus, the cost of Kayla’s medication wasn’t covered by insurance.
While TJ worked his additional hours at UPS, Julia’s income dropped by as much as 70% as she cared for Kayla full time. Eventually, she began working more, but then TJ took unpaid time off. It was a constant juggling act to make ends meet.
They received a Pinky Swear Orange Envelope, which includes a $200 gift card and letters of encouragement.
“We spent the gift card at the grocery store in between rounds of chemotherapy,” Julia said. “We had learned that we needed to be more thoughtful and not rely on hospital vending machine food. The gift card enabled us to prepare more meals before round three of chemo. We cut up cheese, washed grapes, and put them in the mini fridge. I remember that it was such a help. It was two weeks of food, which made a real difference.”
Kayla’s family also applied and received funding from Pinky Swear’s All-Star Fund, which provides assistance for rent/mortgage, utility payments, groceries, gas, and car payments.
Julia learned that Pinky Swear would be sending a check to their mortgage company.
“It was such a sense of relief. So heartwarming and encouraging that Pinky Swear would be that generous,” she said. “Having a child with cancer is very isolating, but at that moment, we did not feel alone. It came at a time when other people had moved on with their lives, after the initial huge surge of support. The timeliness was such a help; there were people out there still thinking of us.”
Julia said the brightest moments have been when the family has been together, either at home or at the hospital, where they decorated her room to make it feel more like home.
“Humor comes out of the four of us being there together,” she said. “What had been mundane tasks before the diagnosis - things like preparing or eating meals together, doing chores, or getting ready for bed - are now precious memories.”
Julia wanted to ensure Pinky Swear supporters knew the impact of their support.
“I hope I can convey how much this means,” said Julia. “Help from family comes on strong initially. Kayla’s treatment is more like a marathon than a sprint, and the support made a huge difference to us at the right time. I want to express our thanks to Pinky Swear Foundation and to the donors who give so generously.”
Now, we get to celebrate that All-Star Kayla has rung her bell, indicating the end of her treatment for Acute Myeloid Leukemia.