brain tumour

The Time To Act Was Now!

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By mid October of 1972 I was having even more trouble swallowing, my balance was poorer, my speech had degraded further and Mona Lisa had a bigger smile than me. I had more air and dye studies (which they were able to complete this time). As before the results were inconclusive. The medical team decided to investigate surgically.

The last two weeks in October was a time of emotional turmoil and reckoning for me. I knew intuitively for a year before this trip to Toronto that something was wrong with me, but I wasn’t about to admit it to anyone including myself. I convinced myself that if I didn’t say anything about it or pretended it wasn’t there it would go away. I kept everything bottled up inside. Now and then something small would set me off. I became very upset and tearful. Getting away from the situation and be alone and quiet seemed the only way I could calm down. Family, friends and teachers would ask me what’s wrong when I was upset but I clammed up. How could I explain what I didn’t understand nor was willing to admit to?

At Sick Kids after enduring test after test, had many heartbreaks and shed many tears, I broke down the barriers that I had set up in my mind. I finally faced the reality of my situation.

I was moved from the general ward to the neurosurgical ward. There I found kids, some older but mostly younger than me, all waiting their turn for neurosurgery. Being with a group of kids all about to meet a similar fate made my wait easier. We quickly got to know each other exchange names and our home towns. Most of the kids were from the Toronto area. We asked each other like inmates doing time in prison, “So what are you in for?”

Our answers were always candid. I told them they were investigating my balance and speech problem which was true. By now I could admit only to myself that I couldn’t smile – a big, wide smile. I sensed that the one thing so uniquely human, to smile, was the one thing I couldn’t do. It was upsetting.

At 9:00 AM, Friday, November 3, 1972, a nurse wheeled in the gurney to take me for neurosurgery. All I could think was, “They’re taking me to the OR to cut my head open!” I was scared silly. What was about to happen to me? Was I going to wake up with a big hole in my head? I started to panic. Tears filled my eyes. I started to pant.

The nurse pushing the gurney tried to calm me down. “Take deep breaths,” she said quietly, “You’ll be all right.”

I remember being transferred from the gurney to the operating table. They placed a gas mask over my nose and mouth and the anesthetist told me to count slowly to ten.

“One, twooo, threeeeeee, fou…”

The surgeons cut from the crown of my head down the back and into my neck muscles to part my skull. They found the tumour. It was a yellowish-white mass of cells that was growing on the brainstem part of my brain, the floor of the 4th ventricle, which lead out into the spinal cord that involved cranial nerves 6 – 11. Because of my tumour’s involvement with the nerves, the cause of my symptoms, they couldn’t remove it. The surgeons took a biopsy and identified my tumour as a low grade (benign) Type II astrocytoma. The doctors wondered that since the rate of onset of my symptoms was increasing if my tumour was becoming malignant.

Astrocytoma: A brain tumour composed of astrocytes which are star-shaped cells that act like connective tissue in the brain.

Surgery lasted five hours and went smoothly. When I woke up in the ICU the first thing I sensed was a throbbing pain in the back of my head.

“My head. It hurts,” I called out.

The anaesthetic made me nauseous and I kept throwing up. I had to lie on my side and a nurse turned me every 20 minutes to prevent bed sores. The only relief from the throbbing was to lie still. It would take 20 minutes for the pain to die down which was time to turn me and the throbbing started again. Throwing up made my head throb too. Between being moved and throwing up there was no escape from the pain for two days.

As a result of exposing my brain to air I hallucinated for the first two days after surgery. People and things appeared as concretely before my eyes as if they were actually there. I interacted with whoever was at my bedside but beyond that was a world like one created on a starship holodeck. I remember seeing a crowd of people standing at the end of a short, wide hall looking at me. I spoke to them but they just stood there motionless with unchanging blank expressions on their faces. When Mom was sitting by my bed we were on a conveyer belt travelling around a large, dark wood, 1950s style gymnasium. It had a mezzanine track around it with people doing various things. We slowly moved along the floor, up onto the mezzanine, around the gym and back down again. The sensation of motion was very real.

Mom and Dad took turns sitting by my bed in the ICU. Mom and I would talk or she would sit there quietly keeping me company as I dozed in and out. Dad read to me. Unable to hide a look of concern on his face Dad said how sorry he was to see me lying there.

I said, “That’s okay Dad, I’m just the right height for when the nurses bend over.” We both chuckled. The nurses did wear their skirts a bit shorter back then and at 13 I had an eye for it.

On the fourth day after surgery the pain in my head was considerably less and my stomach had pretty much settled down. I was released from the ICU and sent back to the neurosurgical ward.

Between the kids in the neurosurgical ward the word was that you had to learn how to walk again after surgery. I resolved that there was no way I was going to have to learn to walk again after my surgery. So on the fourth morning back in the neurosurgical ward with the bed sides finally lowered and the IV out of my leg I decided that I was getting up.

I slowly sat up. It took a while to get used to being upright again after more than a week lying down. Then I gradually let my feet slip to the floor. The full weight of my body on my legs and the feeling of the floor on the soles of my feet took a minute to get used to. I held onto the bed as I gingerly walked around it. When I felt confident enough I slowly walked out of the room and down the hall. Nobody was more surprised than the nurses as I walked past their station and said, “Hi.” I was up for good and the only time I would lie down again was to sleep at night.

Two weeks after surgery I was well enough to go down to the main public area in the front of the hospital with Mom or Dad. Even though I was walking the trip downstairs was a bit far for me. So Dad pushed me in a wheelchair. Catharine hadn’t seen me since the day before surgery. As she was only nine she wasn’t allowed on the ward or in the ICU. Mom cautioned Catharine that my appearance had changed but I don’t think any amount of counselling could have prepared her. Before surgery I was thin and weighed 80 lbs. The ravages of neurosurgery and having little solid food for over a week had thinned me out even more. I was frail, gaunt and pale. When Catharine saw me she gasped and tears rolled her cheeks.

“Hi Kate,” I said and we embraced. I asked her what she had been doing the last two weeks. As we talked her shock wore off. A few days of regular food, the ability to go downstairs to change the scenery from the ward and to see Catharine and friends soon got me on the mend.

Because my brain tumour was inoperable the doctors decided to treat it with radiation therapy. Leaving it alone wasn’t an option. If my tumour went untreated my symptoms would only worsen. Eventually I wouldn’t be able to swallow at all, have virtually no balance and unintelligible speech. The biggest concern – was my tumour about to turn into cancer? One thing was for sure. Left untreated my brain tumour would kill me. The time to act was now!

Then My Game Began – First Period – The Investigation

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16 Family portrait 1969My health steadily worsened and my parents’ anxiety increased over the next eight months as they took me to see one doctor after another in Thunder Bay. The doctors referred me to the Hospital for Sick Children in Toronto. By October of 1972, one month after the Canada versus Soviet Union eight game hockey series – the 1972 Summit Series – I was back at Sick Kids. My friends and I talked about that series all summer. It was a good distraction for me from the worry of going back to see the doctors in Toronto.

Little was known about the Soviets. The cold war between the East and West was at its height and much secrecy existed between the two sides. At the time Canada playing hockey with the Soviets was a novelty to many Canadians. Everyone learned about the Soviet Union through the games. The whole series, especially the games in the USSR, was like a voyage into the unknown and the mystique sparked intrigue and national pride.

The first four games were in Canada and we were all glued to the TV each evening for every game. The Soviets won two and tied one. The remaining four games were played in Moscow. Because of the time difference they were telecast live in the afternoon. This meant we were at school and not in front of a TV. The games were also broadcast live on radio. One of the boys had a transistor radio in his pocket with an ear phone wire running up his sleeve. The play by play went from student to student up and down the rows for all the games. Not one teacher noticed.

On the afternoon of September 28th, the day of the eighth game, class ended just as the final minutes of the third period were ticking down. The score was tied. There was no overtime. Each team had the same number of wins. If this game ended in a tie the Soviets would take the series because they had scored more goals overall. Canada had to win.

I had just gone to my locker and was heading out the door when a crowd of kids surrounding the bicycle rack suddenly threw their arms in the air shouting, “Henderson scored!” Paul Henderson had scored the go-ahead goal with 34 seconds left in the final minute of play. I ran to the bicycle rack where we huddled around a small transistor radio as we held our breath listening to Foster Hewitt’s play by play of the final seconds. Canada won 6-5 and I wore a smile all the way home.


Then my game began:

Brian vs. Tumour

First Period. The Investigation. One month later I was still smiling from the historic goal when Mom, Dad, Catharine and I arrived in Toronto. I saw the doctors the next day who questioned me about my symptoms and did all the initial tests such as listen to my chest with a stethoscope. They wanted to run more tests on me as an inpatient. I was admitted to Sick Kids the following Wednesday.

After seeing the doctors we went to Woodbine race track with Pat, a family friend. Catharine and I called him Uncle Pat. Pat loved horses and everything to do with them. He spent most of his leisure time and money at Woodbine. There he met Frank “King” Clancy who was vice president of the Toronto Maple Leafs and former Leafs defenseman. Pat introduced us to the King and Catharine and I got his autograph. King Clancy turned to me and said, “Come to the Gardens on Saturday and I’ll give you a Team Canada autographed hockey stick.” I nearly fell over. I couldn’t wait. It’s all I thought about for two days.

Saturday morning came and Dad, Pat and I went to Maple Leaf Gardens. Dad said to the doorman, “We’re here to see Mr. Clancy.” Hearing this the doorman perked up and with a smile pointed out the way to where the King had gone. Any friend of the King’s was a friend of his. When we got to where the doorman said to go Dad was told, “Oh, he was just here, try …” This happened a few more times and each inquiry about Mr. Clancy brought a smile to that person’s face. He was obviously very well liked. Our quest to find King Clancy took us to the top of Maple Leaf Gardens where we knocked on the King’s office door. There he was at his desk. He invited us in and we talked for a bit. Then he asked, “Do you know what C.C.C.P. stands for?”

Hey, I knew everything a 13 year old could possibly know about that series. I piped up, “That’s Russian for U.S.S.R.”

He said, “Right, I never knew that.”

I really thought that King Clancy had gone to Moscow and back with the team not knowing what C.C.C.P. on the Soviet jerseys stood for.

The King took us downstairs around to the back of the Gardens where his car was parked. He opened the trunk and in it was a pile of autographed Team Canada hockey sticks. “Which one do you want?” he asked.

The choice was easy. “Henderson,” I said.

King Clancy rummaged through the pile and said, “Ah, here we are, Henderson,” and handed me the stick.

I marvelled at that hockey stick. It was obvious Paul Henderson had used it. There was a chip off the tip of the blade and the tape around it was worn. I read each autograph carefully – Ivan Cournoyer, Ken Dryden, Phil Esposito … Paul Henderson had signed his stick too. I knew the name of every player on that team and the whole team had signed it. Many of my hockey idols in the NHL were on team Canada. Now I had a hockey stick with all their autographs on it that belonged to Paul Henderson.  This was the ultimate hockey prize. Beaming with excitement I proudly showed off my stick to Dad and Pat.

As we walked back into the Gardens King Clancy asked me, “What hand shot are you?”

“Left,” I replied.

“That’s a right-handed stick. You can’t play hockey with that.”

Play hockey with it?! I had no intention of playing hockey with this stick.

Then King Clancy said, “Come back next week and I’ll give you a left-handed stick.”

Wow! I never made it back to Maple Leaf Gardens the following Saturday and I didn’t get a second autographed hockey stick. But I treasure the one I have. I met King Clancy a few more times in the following years and always found him very pleasant and personable. Although he was small in stature compared to today’s NHLers he was big in heart.

The following Monday I saw my first NHL game. Mom, Dad, Catharine and I sat at centre ice ten rows back. I had my first thrill of seeing in person the players I watched on Hockey Night in Canada every Saturday. I felt the coolness off the ice, heard the slap of stick on puck and the players calling to each other. It was an experience wholly different in sound and atmosphere than from watching it on TV.

The Pittsburgh Penguins were in town. That night I discovered a phenomenon named Eddie Shack who played for the Penguins. The Toronto fans cheered for the Leafs as they headed for the Pittsburgh net and I cheered with them. Then I watched in disbelief as those same fans cheered Eddie on when he had the puck charging, like a freight train, for the Toronto goal. Never would I have thought I’d see the Leafs fans cheering for a player on the visiting team. I saw why someone coined the phrase “Clear the track here comes Shack.”

The Leafs won 4-3.

Next season Eddie Shack was traded to Toronto I think just so the Leafs fans could cheer him on as he charged toward the visiting team’s net. Eddie always looked like he was out on the ice having fun. He wore a big smile as he skated around the rink more like a big kid than a serious hockey player. He put a smile on my face as I watched. He said the fans came to be entertained. For that he earned the nick name “The Entertainer,” and he was as entertaining as he was colourful. The Leafs fans loved to see him play including me. I tuned into Hockey Night in Canada each Saturday as much to see Eddie Shack as to watch the Leafs play.

On Wednesday, two days after seeing my first NHL game, I was admitted to the Hospital for Sick Children to investigate the cause of my worsening symptoms. Did I have a brain tumour after all?