When our youngest daughter, Amelie, was 22 months in the fall of 2012, we noticed that she started to have balance problems. She went from zooming around the house to being less steady, and then one Sunday, she stood up and simply fell over. That set off warning bells for me and my wife, Shelley.
We scheduled an appointment with our pediatrician for that Wednesday. From there, our pediatrician sent us to the ER at C.S. Mott Children’s Hospital. Thursday morning she had an MRI where they discovered a brain tumor. Amelie was diagnosed with medulloblastoma, a kind of fast-growing tumor. On Friday, she had a 13-hour surgery to have as much of the tumor removed as possible. The team at Mott took tissue samples from the tumor to study them further.
Dr. Cormac Maher, Amelie’s pediatric neurosurgeon, explained to us that although they were able to remove about 98 percent of the tumor, medulloblastoma often grows back, so Amelie began aggressive chemotherapy. They also did a stem cell rescue – where they remove stem cells from the blood or marrow and freeze it for use as a “rescue” after her treatment to restore Amelie’s blood cells.
Shelley left her career as a mental health therapist to care for Amelie and our older daughter Anya. Amelie, or Amie as she’s nicknamed herself, was in remission from March to August of 2013 when we started noticing that she was getting wobbly again. We started chemotherapy again, which helped keep the tumor from growing, but unfortunately, did not make it go away completely. Shortly after this, Amie’s tumor began growing aggressively again.
She had emergency surgery to resect the tumor. This time, when they removed the tumor, the medical team used tissue from the tumor to perform DNA sequencing. DNA sequencing can give physicians a much more informative look at the genetic makeup of the tumor that a specific person has. In particular, for some patients, it can reveal information that actually refines the diagnosis itself, and therefore how it’s treated. That’s exactly what happened in Amie’s case.
That testing confirmed that Amie did not have medulloblastoma, but rather she had rhabdomyosarcoma. Amelie’s neuro-oncologist, Dr. Patricia Robertson, told us there were only 12 known cases of this muscle tumor in someone’s brain. This discovery – thanks to the DNA sequencing trial we had participated in – guided Dr. Robertson to re-focus her treatment plan based on the knowledge that what we were actually fighting was a different and extremely rare type of tumor.
Amie started radiation therapy shortly after surgery, along with two more rounds of chemotherapy. That combination of focal radiation and chemotherapy was the first time the tumor ever decreased in size. At one point, it was the size of a golf ball, but it’s significantly smaller now.
Amie and our entire family have spent many hours, days and weeks at Mott. The staff and the facility are amazing. So much so that even when we were sitting on the beach at the Disney Resort in Hawaii on Amie’s Make-a-Wish trip, she looked at me and said, “I can’t wait to go to the ‘hosabill.’ I’m going to have so much fun there.” It was amazing to me that in this gorgeous tropical oasis, she could be thinking about how great it was going to be to go back to the hospital.
Amie really enjoys painting, and she loves getting to paint with the Child Life staff. The staff has also been great with our older daughter, pulling her aside and explaining to her what’s happening through medical play. It’s really quite amazing and helps everyone in our family feel more comfortable.
To help break the ice with all the new people Amie meets at Mott, my wife devised a great plan where Amie asks everyone she meets what their favorite color is. They keep track of the favorite colors and then Anya makes charts about which colors are the most favored. It’s a great activity and really helps Amie engage with everyone she meets. She’s also got four solid jokes she can deliver perfectly — so that also helps when she’s meeting new people.
Amie continues to get chemotherapy and we’ll soon do another MRI to see how the tumor is responding. In the meantime, Amie is a super fun little kid and we are tremendously grateful to everyone at Mott for caring for her, and for our family. Knowing that there is research underway at Mott right now – such as the DNA sequencing study – that could truly influence Amelie’s ability to fight her cancer is a big part of why we’re confident having her cared for here. One day, what they’re learning through the DNA sequencing research may help other kids too, and we’re proud to be a part of that.
Take the next steps:
- Discover how you can play a part in the fight to Block Out Cancer.
- Learn more about brain tumor treatment at C.S. Mott Children’s Hospital.
- Learn more about Pediatric Cancer Research at Mott Children’s Hospital.
Jason Strzalkowski and his wife Shelley are parents to Amelie and Anya. In addition to being husband and father, Jason teaches 8th grade U.S. History in Belleville. Before his teaching career, Jason was a journalist for Channel 5 in Flint.
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,” in 2014, and among the 10 best children’s hospitals in the nation by Parents Magazine.