Editor’s Note: As we commemorate National Cancer Survivor Month, we’d like to introduce you to Katrina Knott, whose daughter, Arianna, was one of the five St. Baldrick’s “Ambassadors” for 2019. As you’ll read in her story, survivorship issues in pediatric cancer need attention – and funding – for those like Arianna, whose challenges are many.
Arianna during treatment.
Childhood Cancer Awareness Month: Arianna’s Story
Living not too far from the water, Arianna loved putting her toes in the sand, and we loved going as a family of three to show her the sights, chase the seagulls, get splashed by the saltwater. It turns out, though, that our trips to the beach would become quite a bit different after Arianna’s diagnosis.
We started to notice some issues with Arianna right around her first birthday – while our pediatrician thought it could be because of day care and all the illnesses she was exposed to, we were convinced something wasn’t right.
She was 14 months old when we heard the word “leukemia,”– specifically JMML, juvenile myelomonocytic leukemia – and our world changed. The fact that JMML is extremely rare was even more earth-shattering; how were we going to get this treated? Did she have any chance of survival? Would our life ever be the same again?
Those trips to the beach were on hold for a while – a long while – as we would spend 409 days at the hospital for treatments.
‘The hospital became our home away from home.’
You may have heard people say that before, but those 409 days made that a true statement. We had to make the best of it, so her 2nd birthday was celebrated in the hospital. She couldn’t play with our dogs, Bess and Journey – she loved to lay in their dog beds – and she couldn’t goof around like a typical kid in her room.
Arianna would receive a bone marrow transplant, and, while that was successful, our challenges were just beginning.
The bone marrow transplant worked to cure the cancer itself, but Arianna suffered from Graft Vs. Host Disease (GVHD), an immune condition that occurs after a transplant, when immune cells from donor tissue attack the host’s tissues. In Arianna’s case, GVHD was found specifically in her gut, skin, lungs, and liver.
Arianna will face significant challenges throughout her life.
Our trips to the beach now mean we’re packing like a family of five – all sorts of medicine comes with, we need to have changes for her ostomy bag, and we can’t get sand in her “central line” (where she gets medicine delivered into her body).
Our long-term prognosis is survival, for which we are immeasurably grateful. But Arianna has already experienced significant delays in her development. She is mostly non-verbal, and her gross motor skills are at least two years behind where she should be. She is also dealing with osteoperosis, nutritional deficiencies, lung damage and a chronic cough to go along with it.
Help Us Change the Statistics
When we were dealing with Arianna’s treatment, and now as we deal with her recovery and the survivorship challenges she continues to face, we first learned about St. Baldrick’s, and specifically the role the Foundation plays in pediatric cancer research. We also know that survivorship challenges remain as important to researchers as ever.
The statistic that hit home for us, and for other families of survivors, is “99 percent” – that’s how many survivors have a chronic health problem from pediatric cancer treatments by the time they are 50 years old. It doesn’t matter that her cancer is rare, because the Graft vs. Host Disease is something that happens in quite a few cases – and research funded by St. Baldrick’s is looking to figure out why, and what to do about it.
Arianna in the hospital.
Arianna faces long-term challenges, but, as the picture shows us, she’s doing it with a smile. She’s going to have her struggles, and my job as a mom is to help put her in the best position to have a great life. 99 percent? We don’t want the late effects from cancer treatments to be as prevalent and as common as they are today.
As we work together to Conquer Kids’ Cancer, help us make sure that children like Arianna have the best possible future.
Let’s work to make childhood cancers a thing of the past. Donate today.
Katrina L. Knott