Our grandson Gabe was just five years old when two life-altering events suddenly crashed his kindergartner world. First was the diagnosis no family can ever be prepared for when we were told Gabe had acute lymphocytic leukemia (A.L.L.) Then, shortly after starting treatment, complications led to another unimaginable outcome- he became paralyzed.
When I first learned that I was pregnant with identical twins, I was six weeks into the pregnancy. My husband and I were informed shortly afterwards about the potential risks of developing twin-to-twin transfusion syndrome (TTTS). Our doctor told us approximately 10 to 15 percent of twins who share the same placenta develop TTTS. The risk was always there in the back of our minds, but we didn’t dwell on what might happen.
We were referred to the University of Michigan Maternal Fetal Medicine team for high-risk pregnancies. I just figured we were going to receive top-notch prenatal care! Then, at my 16-week check up, the doctor saw signs that TTTS may be developing and immediately sent us for a more in-depth ultrasound.
When I played on the U-M softball team, I got involved in a program for student-athletes called Michigan From the Heart. In that program, U-M student-athletes met at C.S. Mott Children’s Hospital every Thursday evening to visit patients and their families. It’s a big deal for the U-M sports teams, and we often rushed from practice on Thursdays so we could go.
We’d divide up so each group of student-athletes included a good mixture of athletes from different sports, and then we’d spread out around the hospital. It was an amazing experience and really opened my eyes to the struggles and the courage of these children and their families. My father died of cancer at the start of my junior year of college, after being in remission for 5 years, so cancer has also made a mark on my personal life.
After graduation, I was drafted to the USSSA Pride National Pro Fastpitch softball team. I wanted to continue to help Mott and raise funds, so I combined my love of softball with my passion for Mott and created FIGHT. We held our first “So You Think You Can Hit” event in 2012. I’m a fastpitch softball pitcher and over the years, I’ve heard many of my male friends brag how they could hit one of my pitches. I had them step up to the plate, make a donation and give it a shot.
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.
Last year, I was invited to be a guest writer on this blog to talk about my experiences volunteering at Mott Children’s Hospital with children on the pediatric oncology unit and how it inspired me to begin an exciting project to share their stories.
Since that time, we’ve been able to turn our dream into a reality.
Our new book, “Chronicling Childhood Cancer,” has been published and shares the voices of ten youth who were undergoing cancer treatment.
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.