February 16th 2019. It was a Saturday, and our 20-month-old daughter, Isla, was ready to play. As I watched her picking up her toys, I couldn’t help but continue to be concerned about her swelling abdomen. She had again refused most of her breakfast as she had progressively been refusing food that week—very unlike her, but maybe just turning into a picky toddler? As I drove Isla to urgent care, I had a feeling that something may be very wrong but chalked it up to my own anxiety. Like all moms (particularly anxious nurse moms) my mind bounced between a typical case of constipation, or a serious abdominal tumor. No, no, that couldn’t be, she would be acting a lot sicker….
I had my suspicions weeks leading up to her diagnosis and even used the word “leukemia” at a few various sick visits at her pediatrician’s office and to my husband, Andy. A limp that only lasted a day—my first thought, leukemia!
But my worries were easily talked down and rationalized by other very valid explanations—she’s a clumsy toddler, it was wintertime, sickness season, her labs were fine. After all, I was probably just being extra paranoid given my line of work as a pediatric leukemia/lymphoma nurse. I think a lot of people in medical careers can relate to.
I knew that day at urgent care as soon as the X-ray tech walked us out of the room and said, “good luck, feel better,” with a deep worry behind her eyes, that something was not right. I really knew it was serious after a long wait for the results. The urgent care wasn’t busy at all, were they are on the phone consulting with another doctor? The doctor looked sickly pale when she walked in like Isla did that day, and she said, “where did you say you worked at the hospital?” When I replied, oncology, I thought she was going to throw up right there on the floor, she told me to sit down while she pulled up the X-ray to show me Isla’s severely enlarged liver and spleen. My mind was spinning, and I just kept thinking—my god I was right, I wasn’t being paranoid—there’s no way, please don’t say it, don’t say that you think it’s cancer, maybe it is an infection…I heard the words “I think it’s very likely to be cancer” and nothing else after.
The past 19 months have been hard, particularly the first 12 months of chemo—so incredibly hard, and it’s not often that I let myself think about the depth of that. Busy just trying to get through treatments, admissions at the hospital, hours spent in clinic on top of work, and life. But, as hard as it’s been, it’s also been SO amazing to watch Isla grow like any toddler does in a year’s time. She’s grown so much, is the funniest person I know and became the best big sister in February 2020. Her personality has blossomed and she’s always learning new things, and that has been such a blessing to be able to watch. She is incredibly tolerant of all the things that must be done to treat her leukemia and is mature beyond her young three years. She LOVES seeing her doctors and nurses. I wish everyone could witness resilience like hers. She handles her treatments with such a happy spirit and positivity really amazes me. Isla is so very special, and I’m not sure I would have REALLY appreciated that the way I do now. If all goes well and as planned, she will be finished with chemo in June 2021—a few days after her 4th birthday.
While you are enduring chemo with your child, it is hard to find time or energy for the fun stuff. Outings seem overwhelming, navigating the balance between being immunocompromised and living life to the fullest. The Cincinnati area is so lucky to have The Dragonfly Foundation. They take that stress away for families battling childhood cancers. With planned group activities and individual family activities, you feel like you are surrounded by people who understand without having to explain your situation, and you forget for a moment what day to day life is like. You don’t even realize how much your family needs that until you experience it. They also deliver practical help to families struggling with resources— providing them with basic needs, decreasing some stress so they can focus on their child. Obviously, the medical piece of cancer treatment is top priority, but The Dragonfly Foundation helps to fill the gap of emotional wellbeing for patients and families. They have provided our family with memories that will last our lifetime: Isla dancing the night away at the Holiday party, her face BEAMING with joy watching The Lion King musical, a much-needed date night for mom and dad at Tony’s of Cincinnati, and so much more.
