Overcoming leukemia, pediatric Ewing sarcoma diagnoses
As a family, Kevin and Charline O’Neil and their teenaged children, Braeden and McKenna, have shared a lot of experiences. They love to ski, hike, attend Buffalo professional sports games together, and support each other’s athletics, including soccer, basketball, lacrosse, bike riding and competitive swimming. But one experience they never expected to share as a family was walking through the doors of Roswell Park Comprehensive Cancer Center, where two of them learned they had cancer.
A husband, father and coach with CML — Kevin’s story
In July 2018, Kevin O’Neil, then age 46, went to his doctor for a rash on his leg. “I thought it might be poison ivy,” Kevin recalls. “A few days later my my doctor called. He said, ‘I am so sorry to do this over the phone, but your blood work came back and there are some things well out of the normal range; I suspect you have leukemia.’ I froze and tried to wrap my head around his words.”
"My doctor had already called Roswell Park and made an appointment for the following morning. “He said, ‘This is serious. Prepare to stay for at least the weekend, let them run tests on you, and see what they diagnose.’ After a weekend of sleepless nights, tests, blood draws and a bone marrow biopsy, it was confirmed: I have chronic myeloid leukemia (CML), a rare type of blood cancer that prohibits myeloid cells from maturing into healthy blood red blood cells, white blood cells or platelets.”
Kevin began treatment under the care of Roswell Park's hematologist oncologist Elizabeth Griffiths, MD. “Dr. Griffiths has the most kind, calming and caring manner that definitely helped to ground me and reduce anxiety for me and my family during treatment,” says Kevin. The goal of treatment for CML is to stop bone marrow from producing faulty blood cells that cause myeloid leukemia. These diseased cells crowd out healthy mature cells, leaving the patient with too many immature blood cells known as “blasts.” After discovering that Kevin had a high level of blasts, he began a drug called a tyrosine kinase inhibitor (TKI). “If the treatment didn’t work, I would need to have a bone marrow transplant, but within three months, my level of blasts was reduced, and within a year, my level of diseased cells was nearly undetectable,” Kevin says.
While some CML patients are eventually able to achieve long-term treatment-free remission, Kevin will need to continue the TKI because he still has low levels of diseased cells. “But I now take a lower dose, which has reduced some side effects, including bone pain and fatigue. I’m doing well and am able to coach and play soccer, ski and hike with my family. All through my treatment, my family, friends, soccer community and Dr. Griffiths and her team have been there for me and inspired me to help raise funds to find a cure for this disease. I am also considering participating in a clinical trial,” he adds.
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A teen with Ewing sarcoma — McKenna’s story
Nearly three years after Kevin’s diagnosis, their 14-year-old daughter McKenna (known as Mc) noticed a “little lump” on her right collarbone. “Fortunately, she told me about it and we immediately had it checked out by our pediatrician,” says her mom, Charline. “In reviewing the results, they never said the word ‘cancer’, but they did say there was cause for concern. That’s all it took for me to know our next stop was Roswell Park, based on the expert and compassionate treatment that Kevin received there. An added benefit was the Roswell Park Oishei Children’s’ Cancer and Blood Disorders program.”
Once again, Kevin, Charline and McKenna walked through the front doors of Roswell Park, this time to meet with Matthew Barth, MD, who specializes in pediatric hematology and oncology. “Since the lump was growing and changing colors, Dr. Barth felt that it should be surgically removed and biopsied as soon as possible,” Charline recalls. While Mc was scared, she remembers this as “not that big of a surgery.” The surgeon at Oishei Children’s Hospital (OCH) removed the entire tumor with clear margins. Shortly afterwards, Mc and her family learned that the mass was a stage 1 soft tissue Ewing sarcoma, a rare type of cancer that forms in the bones and soft tissues and typically affects children, teenagers and young adults.
Next, under the care of Ajay Gupta, MD, MS, a Roswell Park pediatric oncologist who specializes in the treatment of sarcomas, Mc began a grueling seven months of treatment that included a five-drug chemotherapy regimen with days of inpatient infusions every other week. After six cycles, Mc had another surgery to remove any remaining sarcoma tissue and then eight more cycles of chemotherapy. “I had to be home-schooled from January to June and I missed hanging out with my friends,” Mc recalls about her months of treatment. “I slept a lot and spent some time on social media.” But there were some good memories, too. “The nurses on the oncology floor were really fun. I liked seeing the therapy dogs and doing activities like art and games with the other kids there when I felt well enough.”
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In conjunction with the Courage of Carly Foundation at Roswell Park and the Buffalo Sabres Foundation and Hockey Fights Cancer program, Mc also got to work with Sabres player Alex Tuch and New Era Cap to design the 2022 Cap of Hope, and got to walk the purple carpet with Tuch at the 2022 Hockey Fights Cancer Sabres game. Other Courage of Carly events and places that Mc attended since being diagnosed include teen prom, Camp Good Days, and even a Justin Bieber concert.
Charline adds that the family-centered focus of Roswell Park Oishei Children’s Cancer and Blood Disorders Program was beneficial for her and Kevin as well. “It was helpful to participate in some rewarding social and fundraising events with other families who understood what our kids and we as parents were all going through,” The O’Neils also have high praise for Dr. Gupta. “No question was ever too silly for us to ask,” she says. “He gave us his cell phone number and always answered our questions, day or night. He was totally approachable. He understood that Mc was an active teen, and he always did what he could to make this situation best for Mc. He was open to her taking part in many of the regular activities that she loved, such as being a mentor on her school’s unified basketball team, riding a bike, and skiing, when she was feeling up to it.”
Mc just celebrated her one-year anniversary of being cancer-free. And while no kid loves going for follow-up visits at a cancer center, Mc describes trips to Roswell Park like “going to a really nice hotel. It’s bright and clean. There are nice spaces to hang out. There’s music playing in the lobby. And the food there is good.”
Looking back on the last few years, the family admits that having two people diagnosed with cancer within a few years was both emotionally and physically draining. But there were some silver linings. “Knowing that Roswell Park took such good care of Kevin and that it was such a nice atmosphere helped make visits there less scary for Mc,” Charline says. “Mc had never been interested in hockey before working with the Sabres, but now she and I will watch the games together, and that has been fun,” adds Kevin. Kevin and Mc also share another bond: the month of September is awareness month for both leukemia and childhood cancer. “Especially now that we’ve been through two types of cancer as a family, we’ll continue to spread awareness and raise funds to fuel critically needed research and treatment programs happening right here at Roswell Park,” says Charline. “We are thankful that such a great hospital is in our own backyard and that we didn’t have to travel across the country to receive amazing treatment.”
Editor’s Note: Cancer patient outcomes and experiences may vary, even for those with the same type of cancer. An individual patient’s story should not be used as a prediction of how another patient will respond to treatment. Roswell Park is transparent about the survival rates of our patients as compared to national standards, and provides this information, when available, within the cancer type sections of this website.