When Your Tumour Leaves You With a Disability – by Noah Severino

Noah Severino

I was 9 years old when I was diagnosed with late stage rhabdomyosarcoma. I had been experiencing chronic fatigue, migraines and tingling in my face for over two months, but none of the doctors could find anything wrong. Then one morning I woke up and I was completely blind in my right eye.

The ophthalmologist found no reason for me to lose my sight so he ordered an emergency CT scan. I remember the pediatrician on call coming out of the viewing room and saying to my mom, “You need to get to SickKids Hospital right now; they are waiting for you.”

A tumour had basically encapsulated my brain and was moving; the doctors thought I was 24 – 48 hours away from dying. They started me on emergency chemo and radiation before they could even put a name to what I had. All in all, I had a total of 50 rounds of chemo and 30 rounds of radiation over the course of a year. Radiation caused third-degree burns on my cheek, head, in my mouth and down my esophagus, so eating was a real challenge. I used to drink coffee creamers to keep my weight up and because my mouth was so raw.

My tumour was so aggressive and advanced when I was diagnosed, that doctors wondered whether I would be able to overcome it. They wondered if I would be functional or articulate after such intense treatment, but here I am, 17 years later, a graduate of the Master of Management program at the Schulich School of Business, and thankfully cancer-free.

Anyone who knows a childhood cancer survivor knows that life doesn’t just return to normal when you are declared cured. The tumour severed my optic nerve and I am completely blind in one eye. The radiation permanently damaged my thyroid and my pituitary gland, and for a long time my tear ducts and salivary glands were not functional. I still live with daily headaches that range from two to nine on the pain scale.

I have annual checkups at my POGO AfterCare Clinic. They are monitoring me for secondary cancers (because of all the radiation) and cardiac issues that may arise due to the type of chemotherapy I had. I get regular MRIs to look for brain tumours and I am thankful that my results have been clear.

As you can imagine, a tumour around my brain, radiation to the head and a year out of school can put a kid at a disadvantage academically.

I was luckier than other childhood cancer survivors in the same situation in that a neighbour who was a retired teacher offered to be my private tutor to help me catch up—I was actually working at a higher level than my peers at one point. Still, I found school challenging (albeit a welcome one) and used special accommodations, like a note taker to help supplement my own notes in case I experienced writing fatigue or a migraine.

Watch Straight Talk: Assistive Technology after Childhood Cancer

Counsellors in the POGO School and Work Transitions Program (Transitions Program) work one-on-one with survivors like me to help us achieve our academic and employment goals. A HUGE challenge for me has been disclosing my disability when applying for a job. No one wants to hear that a potential employee isn’t going to be able to type quickly, or won’t show up for work some days because of the headaches and chronic pain he has to deal with.

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Between some of the workshops I have attended, help from my family and talking one-on-one with my counsellor, I have the tools I need to advocate for myself. It is very intimidating to put yourself out there, but I have gained the confidence I need to say, “I’m a childhood cancer survivor and as a result of my treatments this is what I have to deal with, but I promise you I’m a hard worker and you will be happy with what I can do.”

I can honestly say that if I could go back in time and take away my cancer experience, I don’t think I would. It has shaped my goals and made me who I am. My hope is to one day work with other childhood cancer survivors or kids with serious illnesses to help them grow and be the best they can be.

Through his work with his POGO Counsellor, Noah received a number of post-secondary scholarships and graduated with a (Honours) Bachelor of Humanities from Carleton University and a Master of Management from the Schulich School of Business at York University. Noah is currently working at the Heart and Stroke Foundation.

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