Last February, I started to have these headaches, mostly at the front of my head and at my temples. For three weeks, I didn’t tell anyone, but they seemed to be getting worse and, thinking something might be wrong, I eventually told my parents. Our pediatrician thought it might be sinus headaches, but recommended a CT, just to be safe. Rather than waiting, as we didn’t know how long that might be, we went to the ER and had the scan there.
Point-blank, the doctor there told us, “Good thing that you came; you have a cerebellar tumour.” I went into a sort of shock; I don’t even remember what happened right after hearing this news.
Arrangements were made for surgery, which was scheduled for April 7, in London. I was sent home from the hospital at that point, essentially to wait until the surgery date, but that time at home was short-lived. On March 27, I woke up feeling so unwell that I was brought back to the hospital and stayed there until the surgery. Those days were a blur that I really don’t remember, including the night before the surgery. I’ve been told about that night though; apparently the pressure in my head got so bad, I was repeatedly nauseous and in severe pain.
I didn’t awaken until the day after the surgery. I had a massive bandage around my head, a feeding tube, a breathing tube, an IV hookup and a heartbeat sensor all attached to me. Later on, the bandage would be removed from my head, revealing the area where they had drilled a hole and also where all my stitches were, as well as the long scar down the left side of my head.
On April 19, I had another surgery to put a port inside my body, specifically near my right clavicle. This was added so that later on during the recovery process, they'd be able to give me chemotherapy through the port. This one I remember a bit more. They wheeled me into the operating room on a bed, gave me a stuffed toy dog to cuddle, and both my parents were there. They held my hands and let me know everything would be alright. One minute I was awake; the next thing I knew I woke up in my room.
The two surgeries were successful. The tumour was removed, and the port was added and functioned perfectly. I spent two more weeks in the hospital, recovering and also undergoing short physiotherapy sessions to help me regain more function in my left side. My return home was again short-lived though, as we had to go to Jacksonville, Florida for my Proton therapy and the beginning of my chemo. There are no Proton radiation centres in Canada so my family and I made the 17 hour drive to Florida.
We made the best of the time we had to explore Jacksonville before the really hard chemo started. The Proton radiation scared me but luckily I was able to get through the treatment. After two months in Florida, we drove back home. At that point, I got a 28-day break until I was to restart chemo on July 28. For each chemo treatment, I’d be back in the hospital for three to four days, consistently nauseous just as I was from the Proton therapy. Then I’d be back home for a bit until the next round of chemo. I had a total of six rounds of chemo in London, with visits to the Windsor hospital for bloodwork, short chemo treatments monthly and port cleaning in between.
I did everything I could to stay as healthy as possible but the chemo did make me feel very tired. I lost my appetite so lost weight and had to have a feeding tube. I had to receive bone marrow boosts by syringe, which was very painful. After the 2nd and 4th rounds of chemo, I had nosebleeds that lasted for up to five hours.
After I finally finished the 6th round of chemo in London, I got to ring the bell, which meant I was done. That bell made me truly realize that finally I was done and I’d done it all on time. I got to ring a gong in Windsor too after my last chemo there, and it had a similar effect.
Finally, one month after finishing chemo, I only have to return to the hospital two more times: first, to get my port cleaned, and second, to get my port removed and have an MRI. That will be my last time in the London hospital for a while, although I must have an MRI every 3 months.
There are side effects from chemo. For the next ten years, whenever I go outside, I must wear sunglasses or I could get cataracts. I am currently undergoing physiotherapy and building my body back to how it once was, and hopefully even better than before. Then, I will be able to do all the things I enjoyed before I had surgery, such as play my instruments and play soccer with my team.
Chemo sucks, but it is necessary, and I feel a huge sense of accomplishment for getting through it all. I know and understand better than most people how awful it is. There were times when I wondered if it was worth it. To anyone undergoing something similar, who maybe has the same thought, I’d like to say that you will get through it, it is worth it, and you will feel better and maybe become a better person because of it. I know I have.
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A special note from Jan Pavol’s family:
Dear friends,
We are forever grateful for all of your help and support. We recently learned that the tumour has grown again. With heavy hearts, we are turning to all of you, to ask you to please keep Jan Pavol in your prayers.
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A note from Childcan:
We are deeply saddened to hear of Jan Pavol’s passing in August 2022. Our thoughts are with his friends and family.