It all began on February 14, 2015 with an incident of vomiting. It came out of nowhere. Kohen, then 2 years old, seemed fine both before and immediately afterwards. It was initially dismissed as a reaction to Valentine's Day chocolates. However, this marked the beginning of seven weeks of intermittent sickness, despite Kohen appearing fine otherwise. Multiple visits to the paediatrician yielded no answers.
In late March, Kohen's health took a turn for the worse. He felt "off" all day, showed reduced playfulness, excessive drooling, and eventually had a seizure. After spending two days in the community hospital, he was discharged with a diagnosis of febrile seizure. However, Kohen's balance was affected, and he developed a Parkinson-like shake in his hands.
Everything changed on April 9, 2015. Kohen experienced severe nausea and his walking deteriorated. His mother, Jessie, took Kohen, to the ER and was sent to his paediatrician’s office for advice. After being reassured by both doctors, they returned home but Jessie still felt a sense of unease, and that something more perilous was wrong with her son. Hours passed and Kohen was sleeping soundly during his nap, but when he awoke he could barely walk. Once again, Jessie loaded Kohen and her 3-month-old baby Everly into the car and called her husband home from work. The ER doctor agreed to let Kohen complete a CT scan so that the family could go home and rest easy.
After a CT scan, the devastating news arrived: Kohen had a large brain tumour. He was immediately transferred to the ICU.
The following morning, the family was ushered into a room filled with neurosurgeons, specialists, social workers, and nurses, informing them that they had never seen anything like the tumour and that they should prepare to plan Kohen’s funeral. Kohen was then airlifted to SickKids for immediate attention.
Hours after landing at SickKids and with pre-op baths completed, Kohen had six back to back seizures at 6AM on April 11th, and was no longer responsive. The tumour had ruptured. He was immediately wheeled down for his eight hour surgery, where he was almost lost twice due to heavy bleeding. He needed seven units of blood to get through the surgery. The surgeon removed over 90% of the 14x4 centimetre tumour that occupied over 35% of his brain (which was a grade IV Supratentorial PNET with cancer spread throughout the lining of the brain and spine). Kohen had a very minimal chance of beating it.
Kohen was then admitted for three rounds of brain tumour protocol chemotherapy and then three rounds of mega chemo with stem cell transplant.
Finally, the MRI day came, which showed that the cancer in the lining of Kohen’s brain and spine was gone and the tumour bed had significantly improved. Everyone was thrilled with the results! There was still a small area of concern and it was decided that Kohen would receive high dose focal radiation to the tumour bed.
“We find ourselves holding our breath everyday in fear that it will return but we have hope that it won’t,” Jessie says. “The world as we knew it is gone. Our lives have been forever changed. But waking to our beautiful three year old son looking and behaving as normally as any other three year old little boy is just amazing.”