July 2022 is when we started to really notice symptoms with Sophia. We had enrolled her in a gymnastics day camp and we had to remove her from camp because she vomited on the floor which we assumed was anxiety. We noticed small stumbling episodes over the next two weeks but nothing overly concerning. We did take her to the ER because of the morning vomiting and we were told it was most likely reflux and to resume her reflux medication. Another week and a half later we were camping and we noticed more stumbling and a couple of falls. Sophia could no longer do cartwheels or walk in a straight line. Our last morning camping she vomited again and her face looked different. I said she looked like she had a stroke with slight facial weakness. 

We took Sophia to the ER again on August 14, 2022, explaining we were there for the same symptoms a week prior. After an MRI I was pulled into a room and told she had a brain tumor called DIPG, short for diffuse intrinsic pontine glioma, and there was only one treatment. Sophia would get 30 rounds of radiation. We were admitted to the IWK children's hospital to start the next day.

We had a meeting the next day, about 13 hours after diagnosis, with oncologists, nurses and palliative care. We were told every parents worst nightmare. Sophia had incurable brain cancer and there was absolutely no cure. She will get treatment but she has on average 9 months to live. "Go home and make memories". 

Sophia finished radiation in September 2022 and had the 6 week follow up MRI in November 2022. We were told radiation did not work and she had weeks to live. "Go home and make memories". By February 2023 she was still quite stable so we started to look into alternatives. There was only one other option for Canadians for additional treatment and Sophia did not qualify. We looked elsewhere and after a meeting with her oncologist, we got her into a trial in New York state under compassionate use. Sophia received the new treatment for 8 weeks. After about 6 weeks on the treatment Sophia declined rapidly. Her breathing was inconsistent, her eye control was declining, her speech declined and she could no longer control her upper body. Sophia was very tired and on the afternoon of May 6, 2023, she told me she was ready to give up. Sophia took her last breath at 9pm that night.