All-Star Kaylee

“The help we have received from Pinky Swear makes a difference — more than you will ever know.”  – All-Star Kaylee’s mom Alyssa

Kaylee was just two years old when she was diagnosed. The toddler seemed tired. She was getting sick a lot. Her parents, Alyssa and Tyler, thought maybe it was just the normal bugs a child picks up in daycare. Her pediatrician agreed and prescribed more rest and fluids.

A month later, Kaylee fell off her toddler bed and broke her left arm. After that, they noticed red dots on her body, and one morning Kaylee woke up with a giant bruise on the side of her face.

Alyssa said she first thought it was an autoimmune disorder. Then workers at the daycare Kaylee attended noticed ruptured blood vessels in her eye.

“Each symptom was small on its own, but together they were starting to concern us,” Alyssa said.

It was Valentine’s Day 2023 when the family went to the hospital. The lab results showed that Kaylee had leukemia. Alyssa said her mind immediately went to her cousin who died of leukemia a few years ago at the age of 19. Kaylee’s parents were given time to begin processing the diagnosis and how their lives were going to change as the hospital found them a room.

The diagnosis became more complicated a couple of weeks later when they learned Kaylee has an abnormal chromosome, called the Philadelphia chromosome, in her bone marrow. It allows the leukemia to adhere itself more strongly to Kaylee, making it more difficult to fight and leaving her more prone to illness.

Since Kaylee and her family received her diagnosis, the toddler has spent more time in the hospital than at home. Her chance of relapse is 60%, but fortunately, that has not happened. Her parents are optimistic as they put their trust in her medical team and oncologist.

Kaylee’s big sister stayed with relatives and the family tried to make sense of their world
which had just been turned upside down.

Alyssa said her family had a “very normal” life before Kaylee’s diagnosis.

“We both worked full-time and then looked forward to having fun at the weekends with friends and family,” she said. “We also loved to travel with Kaylee and her older sister. I had just got a promotion at work and life was good.”

In the early days following the diagnosis, Kaylee’s parents thought they could do it all. They had help from others right away. Eventually, the help dwindled. Between that and the amount Kaylee spent in the hospital, both parents were forced to stop working. Kaylee did not return to daycare, missing an entire year. Finances were tight. 

Then they were connected to Pinky Swear and received an Orange Envelope that contained a gift card to help them buy groceries. 

The Orange Envelope program offers financial support to families facing the difficult journey of a childhood cancer diagnosis or relapse. The program provides timely assistance, including a gift card and Letters of Encouragement.

Included in the envelope was a letter about Mitch, the nine-year-old boy who inspired the Pinky Swear mission. Before he died of bone cancer, he made his dad pinky swear promise to help children with cancer even after he was gone. 

Alyssa said the Letters of Encouragement included in the Orange Envelope provided her family some inspiration during a dark time.

“It inspired us to start a wall for Kaylee with all the artwork,” Alyssa explained. “We will keep it until she rings the bell. It has become part of our lives. I read the letter from Mitch and that inspired me even more to want to give back.”

Pinky Swear also helped Alyssa and her family pay their mortgage, providing further relief from their financial burden.

“When Pinky Swear paid the mortgage, it felt amazing. It saved us from the stress of the monthly call to say that our mortgage was late, and it meant that we could focus on Kaylee instead of the stress of trying to keep our home,” Alyssa said. 

Currently, Kaylee is doing okay. She has had a couple of upper respiratory illnesses and has returned to daycare when she is up to it. However, the year away from daycare affected her socially, Allyssa said.

Kaylee prefers to be alone and has not wanted to participate in group activities. She can act up in social settings.

Her family continues to learn to adjust to their new way of life for now. Kaylee still has a little over a year left in treatment. Her sister joined a group that supports children whose siblings are sick. The group has helped her better understand the changes Kaylee is going through and the changes in their family life. Alyssa is back at work, but the balance is hard, and she mentioned feeling exhausted by it all.

“Working and being around people puts Kaylee’s health at risk. We have to be vigilant about germs, showering off each time we come home for example,” Alyssa explained.

Alyssa mentioned a few people who are comfortable discussing the sad topic of childhood cancer, but for most, they avoid it. She said some people do not want to look at Kaylee because her eye surgeries and chemotherapy have left her looking different.

“Those are some of the toughest things to deal with,” said Alyssa.

Despite the ongoing struggles, Alyssa said the support Pinky Swear provided has been a bright spot during her family’s darkest moments.

“Though it might not seem like it, the help we have received from Pinky Swear makes a
difference,” she said. “More than you will ever know.”