MI-ONCOSEQ is one of those initiatives you’ll only find at a world-class institution like the U-M Comprehensive Cancer Center. The SEQ part of the name stands for gene sequencing: the more we understand about the genetic makeup of advanced cancers, the more researchers can develop and test new theories about how to treat metastatic disease. Every Cancer Center patient with metastatic cancer is invited to participate in this genetic sequencing effort. (Ask your oncologist).
“Even if it won’t necessarily cure me, at least I can do something to help the next Continue reading →
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.
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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