On the Friday our son Dominic turned 9 weeks old, he started throwing up immediately after eating. This continued on and off through out the weekend, so we took him to the pediatrician first-thing Monday. During that appointment, the doctor noticed that his head circumference seemed to be not following the normal growth curve. He sent us to a nearby hospital right away.
There they did an ultrasound and MRI, which revealed that Dominic had a brain tumor. On July 23, 2014, he underwent a seven hour tumor resection. The tumor was quite large, about 40 percent of his brain space. One week later, we learned the tumor was a rare, cancerous tumor, called a Choroid Plexus Carcinoma. We knew the road ahead of us would be a long one. Unfortunately, we just didn’t feel like the hospital we were at was a good fit for us, so we transferred Dominic’s care to C.S. Mott Children’s Hospital.
Last year as my daughter, Kailyn, was starting eighth grade, she decided she wanted to play volleyball. She needed a physical to try out, so I took her to a local urgent care center for a basic sport physical. Because she had been diagnosed with a heart murmur when she was much younger, the doctor at the urgent care center would not give her permission to play and referred us to our pediatrician.
Luckily, her pediatrician was able to see her on a Saturday so she could get that sport physical done in time for tryouts. The appointment turned serious when the doctor started pushing on Kailyn’s stomach. She felt something hard and thought it might be her bowels. He told me to give her Metamucil and follow up on Monday for an ultrasound. On Monday, Kailyn called me from school to say that her stomach hurt. I took her straight to the ER.
When I was 44 years old, I had a couple of strokes. It was then that my doctors discovered that I had a congenital heart defect, a hole in my heart. Because it’s a condition most commonly found and treated in children, I had surgery at Mott by a pediatric cardiologist. While I’d been a nurse for nearly 20 years at that point, I decided that I wanted to work where I could make the most difference. I’ve been working in pediatric oncology ever since.
In my job, I help families and patients navigate the journey they take when a child is diagnosed with cancer. Our clinic has Nurse Navigators – each of us are responsible for a certain patient population. I work especially closely with patients in the Solid Tumor Oncology Program. Each of our patients is seen in clinic for evaluation, blood counts, etc, before each round of chemotherapy and also for any worrisome symptoms between treatments.
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 →
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