We were on vacation in Australia in November 2018 when Eva started vomiting every morning. We thought it was congestion at first, but it persisted. She was treated for a UTI while we were away and the antibiotics seemed to help.
Once we returned to Canada at the beginning of December 2018, the vomiting continued. After several trips to the ER, the pediatrician we were referred to sent us back for an emergent CT scan.
December 20, 2018 was when they found the mass growing in her brain. She was 11 months old. That was the last thing we thought could be wrong with our baby. She was an otherwise healthy and happy baby.
We were admitted that night and she had surgery the following day. She was recovering in the PICU 24 hours after finding the tumour. The tumour was located in the posterior fossa and fully resected.
She spent the next two weeks in PICU, including her first Christmas. She had RSV and was intubated for much of that time. That was also when we learned one of her vocal chords was paralyzed and her swallow was compromised. She spent her first birthday in the OR having her broviac placed.
Four weeks following her surgery, she was placed on the SickKids protocol and started three rounds of induction chemo. Due to fevers and other infections she spent almost the entire time in hospital. She then did three rounds of HDC with stem cell transplants. She actually fared better during those rounds and was able to enjoy some time out of hospital.
Following that, she began 12 months of maintenance. It was at that time that we were able to resume a ‘new normal’. Her vocal chord paralysis improved back to normal and her swallow started to improve as well. Within three months she was off tube feeds, and within another few months she was able to drink fully and take her meds. Finally NG free after almost one year.
She completed maintenance in June 2020. She spent 18 months of her first 30 months in treatment. But, she did it with a smile, and a strength we didn’t know possible. We are grateful everyday. We do not take for granted how well she is doing. She has caught up on her speech and is now such a chatterbox. Her walking took much longer. She can walk relatively well, but still struggles with balance issues.
Eva is bright, clever, and mischievous. She makes us laugh everyday. She is the most resilient and determined person we have ever met. She adores her big sister and our hope is that they will continue to grow up together.
Update 1/16/22 - 4th Birthday
Eva had a big year - filled mostly with ups, but some struggles as well; however the most important thing is that she remains NED. She had eye surgery on both eyes, a super scary lung biopsy, more scans and pokes than she would have liked, but ultimately recovered well from everything and didn’t lose her energetic spirit. She is an absolutely delightful little girl who is bright, hilarious, and determined beyond belief. She loves so hard.
Update 1/16/23 - 5th Birthday
Eva is so excited to be turning 5 and has been planning her party for months! Eva has now been off treatment for 2.5 years, and it has been 4 years since her diagnosis. She had a really good year and has been enjoying preschool and playing with her friends. Her scans are every 4 months now, and we have been blessed with clear scans this past year. She is very excited to finally get to go to Disneyland next month!