Meet All-Star Ayven

“We received $500 to help with gas and groceries, that had me in tears. Those things were causing me stress and now I didn’t have to worry about them. Pinky Swear is helping us keep our heads above water. Everyone fighting a battle needs to know there is a support line behind them.” — All-Star Ayven’s mom Carrie

All-Star Ayven’s parents are resilient, overcoming a painful disability and reduced income that comes with seasonal construction work slowdowns, not to mention the daily challenges of raising a family.

But their biggest challenge was to come.

In August 2024, their three-year-old son Ayven was diagnosed with leukemia, turning their lives upside down.

What followed was eight months of treatment, including targeted immunotherapy administered through a pump in a backpack, two and a half years of chemotherapy, and numerous trips to the hospital.

Ayven’s illness came as an even bigger shock because he was a boy who never got sick.

It began with a series of upper respiratory illnesses, lethargy, and a urinary tract infection.

He was given three different rounds of antibiotics. Ayven and his mom, Carrie, visited the emergency room five times for various symptoms, including fevers, a possible gastrointestinal infection due to all the antibiotics he had been given, and pain in his legs.

Finally, Carrie took Ayven to the Urgent Care center at the Children’s Hospital.

“His skin was yellow, and the blood work revealed dangerously low hemoglobin levels and very high white blood cell counts,” Carrie said. “They told me that it could be an infection in his hip, or otherwise leukemia.” 

Ultrasounds were done, and more blood was taken. The results showed Ayven’s white blood cell count had gone up further in just four hours.

Four or five doctors came into their room.

“Right away I knew it wasn’t good, especially when one sat down on a stool next to me,” Carrie said. “I couldn’t process what was going on, or how severe it was. I was in shock.”

The reality of Ayven’s diagnosis set in when he had a bone marrow biopsy, a port inserted in his chest for chemotherapy, and a lumbar puncture. His cancer had been caught early, but there was a high number of cancer cells in his blood and bone marrow.

At home, a neighbor was caring for Carrie’s other son and was on “speed dial” for Ayven’s older sisters.

Ayven’s siblings are all homeschooled, but were always active outside the home. Once he was discharged from the hospital, they began living under a COVID-type protocol, staying home most of the time. Carrie is constantly deep cleaning to keep germs at bay.

Ayven’s dad, Abel, is a subcontractor, and continued to work as much as possible since he only gets paid when he works. And as is the case in construction, work slows down in the winter, so his pay is reduced. 

To add to the family’s financial worries, Carrie has a chronic health problem called Thoracic Outlet Syndrome, a painful condition that affects the nerves, veins, and arteries. There are three forms of it, of which Carrie has all three. She receives disability benefits, which are only paid once a month.

When they were first in the hospital, she sacrificed her own food for Ayven because he did not like hospital food. It was only when she got take-out sandwiches that she finally got him to eat. After a while, she learned to pack a bag which included clothes, food, snacks, soups, and other essentials.

“Usually, I am a planner, so in the summer I put money aside for rent in the winter, but I couldn’t do that because of his cancer treatment,” Carrie said.  “I was very worried about money. Our caseworker was very helpful, and I also researched foundations that could help.”

She said the Pinky Swear Orange Envelope came shortly after Ayven was diagnosed.

“We used it for gas,” Carrie said. “Any gas money we can get is a huge help. It was also extra money for food at the hospital. I legitimately didn’t know that something could mean so much until I had it. It helped to take the burden off, and I didn’t have to use my credit card.”

The Pinky Swear Orange Envelope Program offers financial support to families facing the difficult journey of a childhood cancer diagnosis or relapse. Within six months of a child's diagnosis the program provides a gift card and heartfelt letters of encouragement.

Ayven’s family also got support from Pinky Swear’s All-Star Fund.

“We received help with gas, groceries, and rent, which had me in tears,” Carrie said. “Those things were causing me stress, and now I didn’t have to worry about them.”

She said Abel had been off work for the previous three weeks and had only been working on-and-off since November, so they were beyond grateful for the rent assistance.

“Pinky Swear is helping us keep our heads above water,” Carrie said.

Despite his diagnosis, Ayven remains an outgoing and active little boy. He also tries to make everyone laugh. He wears a chemo backpack, but wants to race someone every chance he gets, yelling “me won.”

Carrie said Ayven brings so much light to everyone’s lives, and calls himself “Baby Dude,” a name he gives to everyone that he likes.

"I try to look on the outside of the box," Carrie said. "Leukemia is on the inside, but outside, my kid is still here playing and wanting to win each race."