In August 2021, after attending only the first few days of Pre-K, 4 year-old Beckett was too ill to continue school. He had come down with Covid but didn’t have the typical symptoms and couldn’t seem to recover. Worried parents Samantha and Kenny knew Beckett wasn’t himself. “Something was very wrong,” said Samantha. “We went through a lot of trips to the hospital for lab work and doctor visits for the next two months trying to find answers.” The answer, their biggest fear, something no parent could possibly ever be prepared to receive, was a diagnosis of B Cell Acute Lymphoblastic Leukemia on October 19, 2021.
Samantha and Kenny were told his treatment plan would be a three year journey – three years of time at SSM Health Cardinal Glennon and the Costas Center – their “second home”, as they refer to it, in addition to their existing home in Smithton, IL. “The first 30 day phase of treatment is called induction,” said Samantha. “The goal of induction is to kill all the cancer cells and induce a remission.” “Beckett had a central line placement, spinal taps, dressing changes, chemotherapy, icky medicine, aches, pains, emotional outbursts, steroid rage and so much more,” recalls Samantha.
“We were thrown into a whole new way of life that we had to adjust to very quickly. Work coverage arrangements for Kenny, having grandparents care for our other two children at home while we focused on Beckett from almost an hour away, and just trying to figure out life from a hospital room. Our world was crumbling around us while the rest of the world kept spinning. We were so scared.” “Beckett was only four years old and was just running around a pre-school playground not all that long before diagnosis, but suddenly he was in severe pain, hardly able to stand on his own two feet, working with the physical therapist and child-life specialists, and we all just missed home and the way life was before this nightmare. Kenny and I had a revolving door of practitioners and information overload every day for the first two weeks,” Samantha said. “I will never forget Beckett’s oncologist and the oncology director telling me at diagnosis that they were now a part of our family,” Samantha said, “They were spot on. We had to trust people with our baby boy to a level I cannot explain. We could not have managed the onslaught of change, new vocabulary, new people, our string of ongoing questions and immense fears without them,” she said. “Words and phrases like neutropenic, intrathecal and transfusion were never part of our daily conversations before cancer,” Samantha said. “Our excitement for everyday things that we used to look forward to such as the kids’ soccer games, date nights or fun school events were quickly replaced by medical milestones like making counts, how many days Beckett could go between blood transfusions and gratitude for the days when he actually felt like getting out of bed to play again,” said Samantha. “Being a cancer mom, the regular seasons of life became trivial. Instead, we started marking the calendar by the next phase of treatment. From induction to consolidation and all the phases in between until Beckett finally reached maintenance….and one day – Beckett will ring that bell!”
Beckett’s initial admission to the hospital lasted 18 days before he was able to go home. During that stay, he and his parents met many doctors, nurses and therapists and many new friends including Thor, the facility dog, Patrick, his Physical Therapist whom he adores, Bree, his art therapist, Kelly, his music therapist, Justine, his child-life therapist, Social Services, Footprints, and more. “We came home with a dozen medications, a binder that looks like a textbook, boxes full of medical supplies and a ton of changes to everyday life. We went from being a typical mom and dad to being a medical mom and dad overnight. We had to learn how to flush his central line and care for him like his nurses. We had to take over academics and be his teachers at home since he was not well enough to attend school. We had to teach him how to take pills and practice many times a day like the Child Life therapists do. We had to keep him safe at home and protect him from any illnesses that his siblings may have brought home. We had to miss family events and holidays for almost an entire year. We couldn’t even go to the grocery store without fear. We had no choice but to do our best, but we also had to constantly give ourselves grace. Among the lifestyle change and fears that we had, it was important for Kenny and I to keep telling each other that it was okay to not be okay,” Samantha said.
The next several months included multiple planned and unplanned admissions to the hospital. There were nasogastric tubes placed for medication administration because Beckett couldn’t tolerate all of the oral medications needed for treatment. There were orthotic leg braces made for Beckett to wear because of instability, lost muscle strength, and muscle tightness as a side effect of some of his chemotherapy. Through it all, however, there were also Nerf battles with his nurses and playing spies in the 4 North hospital hallways. There were crafts and video games in the playroom. There were walks with Thor, the facility dog. There was reverse trick-or-treating from the Cardinal Glennon staff on Halloween and celebrations for other kids who were ringing the bell to signal the end of their chemotherapy journey and getting to go home for good. “There is a lot of hope in those hallways,” said Sam.
Samantha, Kenny and Beckett were living a very hard season medically along with what should have been a very joyful season amid the Thanksgiving and Christmas holidays. “It created a lot of chaos in my own heart and mind, and it was really hard to stop and grieve and process it all. There were a lot of bad days and news along the way that wasn’t what we wanted to hear,” Samantha said. “Our whole family worked through big emotions as we grieved what used to be normal and finding our new normal. Our house felt like a disaster, and most days it was difficult to even take a second to breathe and wrap our heads around everything that had been put in our path since August. We just needed to take it step by step and get through it with as much grace as possible,” Samantha said.
Beckett achieved remission in February 2022. He had almost 7 more months of fairly intense chemo before he started Maintenance, the final phase of treatment, in September 2022. That phase will continue for the next two years until he has completed all of his treatments in 2024. He is now attending kindergarten full time with minimal days off to go to hospital visits.
On October 16, 2022, Beckett’s family participated in the annual SSM Health Cardinal Glennon Sun Run with his team of friends and supporters, “Beckett’s Battalion”. Their team raised over $10,000 and Beckett walked a full mile at the event! “A year ago at this time, he couldn’t even stand on his own two feet from all of the pain,” commented Samantha that day. “How far he has come….we have all come…in this past year. It was 363 days ago when our tiny warrior was diagnosed with leukemia. 362 days ago Beckett had his first chemo treatment. 255 days ago Beckett achieved remission. He will win this battle, and we have Cardinal Glennon to thank for that. This year has been the hardest year of mine and Kenny’s lives, yet we’ve been filled with more faith and gratitude than ever. We are all counting down the days until he rings that bel. We know that day will come….and we will celebrate big! Until then, we will all keep fighting!”