Story of Heroes - Kohen
Kohen
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. No other incidents happened during the days that followed, so his parents thought it was due to Valentine’s Day chocolates. Little did they know, this was the beginning of 7 weeks of on and off sickness, and all the while Kohen would act perfectly fine. During this period, Kohen’s parents made multiple calls and visits to the paediatrician but nothing was found to be wrong.
In late March, Kohen awoke and had another incident of upset stomach, but this time things were different – he was “off” all day, not playing much and drooling profusely. Later this day, he also had a seizure. After spending two days at the community hospital, Kohen was discharged as having had a febrile seizure. Things never seemed right after this, his balance was off and he had a Parkinson-like shake in his hands, although no bouts of sickness.
That is until April 9, 2015 when Kohen was sick to his stomach. His walk had also deteriorated. His mother, Jessie, went to the ER and then was sent to his paediatrician’s office for advice. After being reassured by both doctors, they returned home but Jessie felt panicky and scared. Her “mother’s instinct” was telling her something was seriously wrong. 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.
No one expected the results, as Jessie says, “I will never forget the look on her face as she approached the room we were in with Kohen and Everly (both fast asleep) and requested that we sit down. My heart sank. In that moment, my life was forever changed: Kohen had a very 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.
Kohen is now 5 years old, started senior kindergarten this year, and has no evidence of disease! Kohen will continue to be followed closely with full brain and spine MRIs every three months.
“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.”
