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.
What does this mean exactly? Aside from this bringing yet another year of training (this will be 27th grade for me!), I will spend a year learning how to take care of children diagnosed with brain tumors, working with incredible pediatric neuro-oncology clinicians, Dr. Patricia Robertson and Marcia Leonard, APRN.
In addition to my clinical work, I will also continue working in the Castro/Lowenstein Lab that focuses on learning more about malignant brain tumors. Drs. Lowenstein and Castro have established tremendous success in developing gene therapies to treat brain tumors, one of which is now the basis of a Phase I trial in adult patients here at the University of Michigan. Continue reading →
In late August, Children’s Mercy Hospital in Kansas City, Mo., began seeing an unusual number of children experiencing respiratory problems. The patients tested positive on a respiratory panel administered by the hospital, but that panel could not identify the specific virus. Staff sent the samples to the Center for Disease Control and Prevention (CDC) for further analysis. The CDC determined that the patients were suffering from Enterovirus D68 (EV-D68).
There are about 100 different types of Enterovirus. From June to October every year, some type of Enterovirus usually circulates in the United States. If you’ve ever had a summer cold, it was probably caused by an Enterovirus. EV-D68 specifically is something we don’t typically see in the U.S., but it has been around since the 1960s.
While we’ve seen an increase in patient volume at the C.S. Mott Children’s Hospital emergency department and in our Intensive Care Unit, we cannot conclusively say that these patients have EV-D68. The only way to know is to have lab samples examined by the CDC, which we are working on now.
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.
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