The Eye of the Hurricane

I took my daughter to the Ottawa Senators’ game against the St Louis Blues this afternoon. I want to share why this was a very emotional experience.

Since Sofia was born in 2005, my little girl has always been my best friend. She goes fishing with me, she helps me with the garden, and she watches hockey with me. There is no one I would rather spend time with. One of my favourite memories is watching the gold medal hockey game from the Vancouver Olympics with her. Other people remember the Crosby goal, I remember her singing along with our national anthem, and belting out Oh Canada at the top of her lungs. It is one of those precious memories that all dads have. That day I promised to take her to some Ottawa Senators games once she was a little bit older and was able to stay up late enough. This made her jump for joy (literally).

Things were trucking along like they do with most families. She was in ballet, gymnastics, and when she was five years old, going on six, she started skating lessons. However, by this time something was clearly not right. That entire summer she was experiencing stabbing eye pain on an almost daily basis that was bad enough to take her into Emergency at the local children’s hospital on multiple occasions. Then she started to have stomach pains as well. By the time her skating lessons started, her balance was off to the point where she could not skate unless one of the coaches (they were all wonderful) held her hands and guided her.

Something was clearly wrong, but no one knew what. Then things got worse. A lot worse. Shortly after Remembrance Day she started to wake up at 3 AM each and every day, wide awake unwilling and unable to fall back asleep. Visits to assorted doctors started to become a part of our routine. By Christmas time we were going in to the local clinic on a weekly basis. Just before the New Year a doctor there noticed that she had a weight spike of about 15 pounds in a week and a half. She called ahead to Emergency, and they took things very seriously. She was admitted.

On January 2nd of 2012 she had an MRI. We knew things were bad when they called a big meeting the next day with us, a neurosurgeon, a social worker, I think a spiritual guide of some sort (I am fuzzy on this), and assorted other doctors. They pulled up the MRI, which showed a golf ball sized mass lodged in the middle of her brain. She was to be emergency airlifted to Sick Kids in Toronto the next day so they could use computer assisted surgical techniques for a biopsy. This would determine the type of brain tumour, which in turn would dictate the treatment that would be required. Sofia’s wonderful spirit continued to shine through during this ordeal. This picture was taken at the Tim Horton’s attached to Sick Kids. We had teams of doctors in and out of the room all day long every day, and this little trip to Timmy’s was a bright spot in the middle of it all.

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It turned out to be a suprasellar germinoma, which (if my math is right) afflicts about 1 in 3.3 million children. The tumour compromised her hypothalamus (this was the waking up at night and the weight gain) and for the most part destroyed her pituitary gland. What was left of her pituitary gland was obliterated during the radiation part of the treatment.

We started the treatment process, which involved both Chemotherapy and radiation, in Toronto but came home to Ottawa after a month. Her doctor in Toronto, who is a world famous oncologist, supported this move by simply telling us that the protocol is set and could be administered anywhere. He ended the discussion by simply saying that, in his opinion, the best place to heal is at home. So we went home. Chemotherapy and radiation were brutal on her. Our home time together was precious, as you can see by this picture was taken after her second cycle of chemo, about 5 minutes after we got home.

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Sofia now requires life long medications to replace the hormones and other things that her body no longer produces. The after effects of the radiation to her brain and the chemo drugs in her body also loom large. Less than six months after her treatments ended she started seizuring and was rushed to the hospital, unconscious. She was in a coma for days as the doctors dealt with the cerebral salt wasting-another ultra-rare condition. She ended up blind for close to a month, and with neuropathic pain than still makes every more sensitive. Sitting by her side while she was in the coma, unsure if she would ever wake up, I said my goodbyes to her just in case. It was one of three times that I said goodbye to my little girl because there was a very real possibility that should would not make it through that day. A parent should never have to experience even one of those moments. She is a fighter though, and she managed to get up again and dust herself off each of these times.

We have had loads of support along the way. One of the groups that plays a big role in supporting families is Candlelighters. Along with many other things they do to provide support, the Candlelighters in Ottawa has a box seat at Canadian Tire Center, and distributes tickets to Senators games and other events to oncology kids and their families. I wanted to take advantage of this since treatment began, but Sofia’s health was always too poor to consider going. As a leap of faith, I bought Sofia an Ottawa Senators Heritage jersey, with Bobby Ryan’s name and number on the back, for Christmas last year. When the call for spots at Senators games came out from Candlelighters this year shortly after the season started, I put our names in to go to the St Louis game because it was an afternoon game and would not mess up her sleep schedule. We were selected, and the tickets came in the mail a short while later.

As the days rolled by, and we were getting closer to the game, Sofia was clearly getting more and more excited about going. Last night she told me, when the lights went out after her bedtime story, that she was really excited about going to a game. When she woke up this morning (6 AM sharp like every single other day, a holdover from the damage), the first thing out of her mouth was “hockey day today!” Even so, it was touch and go. She was really struggling for the morning and into the early afternoon prior to the game. I was very close to contacting other oncology parents in order to give our spots to them instead. When it was time to get ready to go, it was like a new Sofia appeared. She was happy, she was not nauseous. She was just ready to go. On the way to Canadian Tire Center, I told her about Bryan Murray, and how he had to have the “special medicine” as well.

We shared the suite with four other oncology families and a representative from Candlelighters. Just being there was very emotional for me to being with, but when Lyndon Slewidge sang the national anthem looked over and Sofia was singing along. I completely lost it for a while, and I was barely able to focus on the fist part of the game. I just watched her as she smiled and watched the game. She loved being at the game, and kept talking about how much she loved it the entire time we were there. She sang along and bopped in her seat to the music that came over the PA, she cheered when the Senators scored, and she soaked up the atmosphere the entire time we were there. It was like all of her physical issues, and the weight of all of her experiences over the past three years, had been lifted off of her. Here we are at the game, and she is rocking the heritage jersey.

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We were having so much fun neither of us wanted the final buzzer to sound. She left with a bounce in her step, and a smile. It was a truly awe inspiring experience.

If this was a Disney movie it would end here. Life, of course, is not like that. Sofia started to feel very sick again in the last half of the drive home, and she was only so-so by the time she went to bed. The game was really the eye of the hurricane for us, a tranquil moment in an otherwise chaotic life. I am thankful that we were able to go.

The thing that I really admired about the way Bryan Murray talks about his cancer is that is he is always direct and honest. I played with the idea of putting up a post about going to the game since we got the tickets, and I think I would have talked myself out of it if I did not see Bryan Murray’s interview last week. These stories need to be told.

Thank you for taking the time to read about a very small part of Sofia’s story.

 

 

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