Seven-year-old Kennedy loves gymnastics and practices it at least an hour a day, so when she suddenly stopped wanting to go, her mom knew something was wrong. Athena, Kennedy's mom, thought maybe she was being bullied. However, it wasn't long after Kennedy had a series of fevers that they drove to their pediatrician's office and found the answer. Once Kennedy's pediatrician ran her blood work, they saw the low blood counts and broke the news "likely leukemia.” Athena immediately rushed home, packed a bag and headed to VCU Health. Doctors confirmed the diagnosis later that night, and Kennedy was in surgery the following morning. On May 12, 2021, she had her port placed and began chemotherapy as part of her treatment plan that will span nearly two and a half years.
"Terrifying is how I would describe that day. There was no time to research the diagnosis or think about the best course of action," exclaims Athena. "But then we were okay, as we got to go home a week later, and Kennedy's treatment would be outpatient going forward. It felt manageable." Childhood cancer is not predictable, though. Life can change instantly from the moment of diagnosis and through treatment – and that was the case for Kennedy and her family.
Thankfully, Kennedy was back on her feet and released from the hospital after nine days, which was long enough for her family to feel the impact of the pandemic. Opportunities for socialization and connection were tough to come by.
"Being inpatient was isolating as there was no interaction with other patients," recalls Athena. "The same is true for when we returned to outpatient treatment at the ASK clinic. Kennedy goes straight back to her room; there are no waiting room activities or meeting other kids. Having Katie, ASK's child life specialist, in the clinic has helped tremendously. When Kennedy had an unexpected blood transfusion, she was crying and upset. Katie brought in a huge LEGO set to help her pass the time, and they talked and laughed. She's able to calm Kennedy down and make her smile."
ASK chaplain Rich is another calming presence that has made an impression on Kennedy. Rich checks in with them often to talk and just see how they're doing – though Kennedy thinks of him as the guy who knows about LOL dolls. "The dolls definitely help to pass the time as they take 30 minutes just to unwrap," laughs Athena.
In addition to the family support team in clinic, Athena shares that social events, like ASK Night at The Diamond and the Kourageous Kids Celebration, have been an enormous comfort to her and her family.
"After Kennedy's diagnosis, we felt like we were alone in a bubble, but ASK's social events have allowed us to meet other families," Athena explains. "I also attend the parent meet-ups, which have been good for having time without the kids present so that I can express my feelings. Being able to meet parents further along in their treatment journey and to ask questions about what to expect at different stages is very helpful." "Even scarier than the day of Kennedy's diagnosis was the following week when she spiked another fever, and we were told she would need to go to inpatient for up to 28 days until her blood counts improved," shares Athena. "All of a sudden, we were moving into the hospital and having to figure out plans for our son's care and our work. My mom quickly flew in from Washington state to help."
Athena and her family are grateful to ASK for all of the family support provided. "ASK offers a sense of community which is mind-changing. It's how I get through it."
Watch the Keene family's story below: