When our then 4-year-old daughter Keira complained of a stomachache, we thought she was probably constipated. We gave her laxatives and took her to the pediatrician who also agreed it was most likely constipation. He told us to bring her back in two weeks if she wasn’t improving.
Her stomach continued to hurt and her abdomen became very swollen. We took her back to the doctor who ordered some blood work and X-rays. He told us that if she wasn’t better in the morning to take her to the Emergency Room. Keira tried to convince us that she felt better, but we knew she was still in pain. We took her to the C.S. Mott Children’s Hospital ER.
My husband drove Keira up to Ann Arbor from our home in Tecumseh and I stayed home with our son, Cooper, who was 2 years old at the time. After several hours, my husband called and told me they’d found a mass on Keira’s left kidney and thought it was cancer. I quickly found someone to care for our son and rushed to Mott.
Through verbal conversations, written texts, and/or visual representations, these children with cancer shared with me their personal and intimate experiences.
It has been an honor to listen to these children, to give them a chance to have their voice be heard. The written and drawn narratives in the book, some of which are excerpted in the below slideshow, illuminate aspects of childhood cancer that too often remain hidden.
I was diagnosed with stage 5 Wilms Tumor, a kidney cancer, when I was 6 years old. I’ve had recurrences when I was 10, 13, 16, and 17-18 years old. I’ve had tumors in my spinal cord, lungs, kidney, liver and diaphragm. I’m now 19 years old. Through it all, C.S. Mott Children’s Hospital has been there helping me fight.
During my treatment, I was part of a genetic sequencing study at Mott where researchers broke apart my DNA to help personalize my treatment plan specifically to me and my cancer. Chemotherapy and radiation do not work on my tumors, but the Mott team was able to put me in a clinical trial based on what they learned from the gene sequencing, and I’m now living comfortably on the new personalized medication. It’s given me a new chance to live and make a difference.
From the minute a child is born, that child’s parents develop dreams for their child. While rocking them to sleep at night, and looking into that perfect little face, a parent dreams of who that child will become, and what he or she might accomplish. An author, a photographer, a doctor.
I’m sure my parents dreamed of these same things, even after I was diagnosed with cerebral palsy. Since then, I’ve come a long way. I’ve accomplished so many amazing things, despite my disability. I’ve overcome numerous hurdles, and faced countless challenges. And through it all, I’ve learned some things during this journey.
It’s OK to ask questions. It happens more often than you’d think. I’m in a public place, a restaurant or store. A child is with his or her parent, and the inevitable question is asked. “Why is that lady in a wheelchair?” And, more often than not, the parent steers the child away from me, quietly whispering that asking that question isn’t polite, and didn’t I teach you better than that? Personally, I’d rather that child have asked me. How else do we learn? How else do we push past our own assumptions and choose to grow? We seek knowledge. So, ask the question. Learn.
When Ava was born in February of 2011, all was well in our home as we were figuring out how to juggle a newborn and her two siblings, who at the time were 3 and 2. We noticed that Ava was not gaining enough weight, but we were not sure why. One day in May she developed a high fever and we brought her to the emergency room where we were quickly admitted. During that long inpatient stay, doctors discovered what was causing the fever and the answer to why Ava was not gaining weight — she had difficulties swallowing and was aspirating liquids into her lungs.