as told by his mom, Sarah.
On March 26, 2015, an appointment with the eye doctor changed our lives forever…
At the end of 2014, we’d noticed that our usually energetic seven-year-old son was not himself. He was more tired than usual and had some random episodes of vomiting. This was dismissed as reflux.
It was not until he started to have visual disturbances and headaches that my “mom gut” told me something was very wrong. I felt he had a brain tumour, but no one believed me. I was sent away from the ER twice, told he was a normal healthy seven-year-old and to see an eye doctor if his eyes continued to bother him. It was the optometrist who saw the swelling on my son’s optic nerve and sent us to ER with documents in hand for an immediate CT scan.
After his scan was done, our worst fears were confirmed; we were told “your son has a very large brain tumour on his frontal lobe”.
Things happened very quickly after that and he was taken into surgery that night.
It was a very long night as we waited for his seven-hour surgery to be finished.
The surgeon told us his tumour was the size of a large apple and it was hard to tell if she got it all. We would have to wait for the pathology report to tell us what kind of tumour it was. His tumour was difficult to figure out and, after a long month of waiting, we were told it was cancer and we were given a diagnosis of a “CNS Ewing’s sarcoma”.
Nick was started on a very intense chemotherapy protocol during which he spent more time in the hospital than out. One month into chemo, they did another MRI that showed a small tumour was there.
On June 8, 2015, Nick had his second brain surgery.
The pathology of his tumour was a source of great debate amongst a number of pathologists at different centres as it never quite fit the original diagnosis. We stopped the first protocol and started down a different path based on a new diagnosis of a “PNET”, but, again, his tumour did not quite fit the profile of that diagnosis either.
Four doses into cranial spinal radiation, we got the call that a new diagnosis had been agreed upon amongst the pathologists and, once again, his treatment protocol would be changed. He now was diagnosed with an “anaplastic supratentorial ependymoma”. Chemo was stopped and 33 doses of focal radiation continued.
During radiation a review of his scans was done by the tumour board and it was determined that there was still one cm of tumour left behind from the very first surgery. If it was still there at the end of radiation, he would need another surgery.
It was so on October 13, 2015, we were off to Sick Kids in Toronto for his third brain surgery.
The surgeon said he got it all! Nick was finally tumour-free!
It has been a long road but, as of right now, Nick is 15 months post treatment and cancer free! He is doing great at school and back playing soccer and hockey. We are not out of the woods yet and he is monitored every three months for recurrence.
We have learned to not take anything for granted and make the most of every day!
Renee from Childcan was in touch with me within days of receiving his initial diagnosis. She provided us with a parking pass, meal tickets during each admission and, most importantly, emotional support which we did not get from anywhere else.
I remember one of the first things Renee told me was to “start everyday with hope”. This got me through some of the toughest days and continues to my motto. We will never give up hope!