KSON Going Gold for Mae Morinoue

September 27, 2016

Mae's mother Andrea shares her story:

Mae was diagnosed with stage 4, high risk, amplified Neuroblastoma in January of 2014 after just turning 2. She was a typical happy and healthy child until she came down with what we thought was a tummy bug. We brought her in after it seemed to be getting worse and after some blood tests, ultrasound, and MRI, we were told she had a tumor the size of a chicken in her abdomen and it was growing at an alarming rate. She went from being pretty sick to being in the PICU in 3 days. It was growing so fast and started to make fluid which restricted her breathing. We were very near losing many times in the first weeks of diagnosis.

It took three weeks to get Mae stable enough to go home and then we started the full treatment. She endured 6 rounds of chemo, 5 surgeries, 14 rounds of radiation, 6 rounds of accutane, and 6 rounds of painful antibody treatment that they describe as active labor pains or electric shocks. We traveled to New York for most of her treatment as Memorial Sloan Kettering is one of the best for Neuroblastoma.

Mae has an older sister, Mika, who has been so amazing through this terrible time and has lifted Mae's spirits any time she was having a bad day. She has been through so much as well watching her sister suffer and not having her family together all the time.

Mae has now started the DFMO trial in Michigan with Dr. Sholler to help reduce her chance of relapse which is at a horrible rate of 50-60% of kids. She has scans in early October to see if the cancer has returned and we are hoping with every ounce of our being that she remains clear and we can officially say she is two years clear. 

Through this journey so far, we couldn't be more grateful for what we have and how well she is doing right now. We are fully aware of how sneaky this disease is and we are nowhere near clear from it but holding onto every ounce of hope she will beat it for good. She is so strong and has fought so hard. We can't thank everyone enough for all of the support and well wishes. If you want to follow her journey, go to facebook.com/MaesJourney.

Mae's mom Andrea talked to us about her daughter's progress: