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.
Before you find yourself in a situation like this, it can be easy to assume medical care is about medicine and procedures. It is, of course, but there is so much more to it. You’re putting your child’s life in someone’s hands – but your whole family’s emotional well-being is thrown into a strange and unfamiliar territory as well.
At Mott, Dominic mattered to everyone who worked there. They cared for his medical needs, of course – but they also cared for him and us as people. We immediately felt comfortable.
The staff was very good at calming our fears. They even addressed fears before we said anything to them. You could tell that they care and are very experienced in treating children and caring for their parents. Whether we needed 10 minutes or three hours, the doctors and staff answered all of our questions. They also followed through on every promise.
As a parent – you want to assume that that level of compassion and attention is the case at every hospital, so it was surprising and unsettling to us to not have that confidence initially.
In September of 2014, Dominic started the first of six rounds of chemo. He was inpatient at Mott for five days for each round. We stayed with him in his room. It was not easy, but the Mott staff did everything they could to make us comfortable. We called some of the night nurses “ninjas.” They could come in and out of the room without us even noticing.
Dominic did amazingly well through each round of chemo. He remained a happy little guy, always playing and smiling. In between treatments we gave him shots everyday to boost his white counts. Most days he didn’t even cry! We also flushed his broviac line daily and managed a long list of medications. You really never know how strong you are until you have to be!
During Dominic’s last round of chemo, Kelly’s dad passed away. That’s when we really saw how the Mott team was there for all of us. Everyone who had been treating and working with Dominic was there for us. They came to talk to and spend time with Kelly.
Then, a few months ago, when Dominic celebrated his first birthday, his nurse-practitioner took time out of her personal schedule to attend his baseball-themed party. That’s what family does, after all.
Dominic finished chemo in April. He’s 16 months old now, and all his scans and tests indicate that he’s healthy. In fact, he’s completely on track developmentally, despite all that he’s been through.
For any other families facing this challenge, we’d say take it one day at a time. When we got ahead of ourselves it was the toughest. The Mott staff helped us stay in the moment. It’s one small goal, one small victory at a time. Most importantly – trust your intuition, and find a place where you feel comfortable and cared for as a family.
Take the next steps:
- Discover how you can play a part in the fight to Block Out Cancer.
- Learn more about the Mott Children’s Hospital Cancer Program.
Block Out Cancer is a rallying cry for people from all walks of life to come together to support the fight against children’s cancers. Everyone has a role to play. Learn more about how you can help Block Out Cancer.
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.