Sunnyside Up: April 2010

I decided this year to join the Epilepsy Association of Nova Scotia's Board of Directors. It was something that I had been wanting to do for a really long time but never felt that I could fully commit myself to because of either school or work. I promised myself when I finished in Moncton and was settled in Halifax I would join then. And that's what I did.

As some of you may or may not now, the Epilepsy Association is my charity of choice and I hold it close to my heart for one particular reason: my brother. When my brother was three he was diagnosed with epilepsy. I don't remember how that diagnosis was reached or how Mom and Dad came to notice that something was wrong. I was only 5 at the time so I was probably sheltered from a lot that was going on. What I do remember about growing up was being like my little brother's bodyguard. I don't remember what I was told but I knew that Mom and Dad didn't want my brother to be treated any differently than any of the other kids so they also didn't feel it was necessary that everyone know about his condition. Mom and Dad of course told his teachers, coaches, our close family and friends. But none of Christopher's friends knew there was anything wrong with him and I was to help keep it that way.

99% of the time you hear horror stories about siblings not getting along and what they do to torment each other to make everyone's life miserable for a good chunk of their years growing up. It wasn't like that in our house. Christopher and I were best friends. I think it was probably because I was controlling and he was passive agressive so he basically did anything and everything I told him to do which worked out fine for me. We played outside together, skated together, played in our toyroom together and almost never fought. Mom and Dad took us to Keji every summer to camp for at least a few weeks of the summer. I would always have a constant eye on Christopher, to make sure to be close if he had a seizure.

His seizures were hardly even noticeable if you didn't know what to look for and only lasted about 1 minute. His eyes would get kind of glassy and he would start to stare into space. What was characteristic of his seizures was that he swallowed about 50 times in the span of a minute while kind of rocking back and forth. He was mostly unresponsive and disoriented during the seizure. When he got older, he was able to recognize when he was going to have a seizure and he would stop what he was doing and go sit down somewhere until it was over. After it was over, he was extremely exhausted and usually had to lay down and have a nap.

He could go weeks without having one but it seemed that when one came, it was followed by a string of others. In the span of a week, he could have up to 6 or 7. We travelled to the IWK a lot growing up as he had checkups and scans every month. I always enjoyed these trips because I usually got to miss a day of school, we got to stay in a hotel and I LOVED the play area on the neurology floor. The secretary and doctors up there were the best and always had treats or new toys for me. I imagine the experience wasn't as fun for Christopher :p

The doctors and neurologists at the IWK told Mom and Dad when Christopher was first diagnosed that it was a tumor causing the seizures and epilepsy. Their first question was whether it was operable or not. They said no, that it was on the memory and language part of the brain and that it was way too risky. He would just have to be on medication for the rest of his life. They tried new medication and adjusted his dosages to see if one medication would cause less seizures than the others. Nothing really seemed to be fullproof and there was no obvious pattern. During the whole time that Christopher was sick I don't once remember Mom & Dad not being strong and staying positive. Mom poured through thousands of books and articles on epilepsy, educating herself on the newest medications and treatment options. The internet was just taking off down home (we had dial-up until 3 years ago) so she was also learning how to navigate through that to find information world wide.

When Christopher was approximately 10, Mom asked Christopher's doctors in Halifax about the Hospital for Sick Children in London, Ontario. Mom had been reading about the hospital and about how they had the leading edge technology when it came to epilepsy treatment and surgery. They told Mom and Dad that they didn't think there was any way that the tumor in Christopher's brain was operable and that there was nothing more the hospital in London could do.

Because Mom is a fighter and a believer that if you want things done you have to do them yourself, she contacted the hospital in London herself and told them about Christopher's condition. She got the IWK to send up Christopher's chart and file so that the doctors could assess his condition...

...I still remember the day as if it was yesterday. Mom and Dad had decided to remodel the kitchen. It was the end of the school year in 1998. I was 14 at the time. Our whole house was torn apart and we were eating in our camper that was parked outside of the house. There were carpenters and sawdust everywhere. It was going to be a long summer. It was a really nice day outside and I was in the kitchen doing something at what was left of the counter. The phone rang. Mom picked it up and her face immediately changed. She motionned for me to get her a pen and paper. Mom was saying things like, yes, we will find a way to make it out there for then... and her face was beat red. I was getting really nervous. She finally hung up and looked at me and said "The doctors in London have agreed to operate on Christopher and they want us there on Tuesday." It was Friday. It was really emotional Mom and I hugged and cried and we called my Dad and grandparents. My little sister was only 4 at the time so there were a lot of things to get in order before my parents flew out on Sunday.

Thank God my parents had already picked out most of the stuff that they wanted for the kitchen so they didn't have to worry about the carpenters that much. Whatever they could do while my parents were gone was fine and the rest would have to wait until they got back. Sarah and I were going to stay at Grand-mere's while Mom and Dad were gone. I wasn't totally impressed by this because no one knew how long they would be gone but I knew better than to argue. I just made sure I asked Mom and Dad to tell Grandmere to let me go to my friends' houses when I wanted to and when I wasn't working. They left that Sunday morning. Two days after getting the phone call. I don't even remember Christopher's reaction. I honestly don't think he had much time to think about it.

The first few days were ok....Mom and Dad arrived safely and met with the neurology team on Monday morning. There were a lot of tests and scans to be done and since there was so much to prepare for, Mom and Dad didn't have much time to keep us updated at home. On Tuesday he went under. It was an 8 hour surgery. Grand-mere and I sat impatiently and waited by the phone. Finally Dad called to say that he was out of surgery and that the doctors said that everything had gone OK but it would be awhile before they knew if there had been any damage or memory loss. The next few days were rough as everyone was calling Grand-mere's house asking about Christopher. I found that was really emotional because just when you forgot about it for a minute someone else would bring it up. Sarah kept me busy and entertained, she was so innocent and little that she didn't know what was going on. It was like an extended adventure at Grand-mere's for her. Little by little Christopher started to come around. Mom called one night and explained to me what he looked like and how he was doing. I had a million questions that they didn't feel like answering but did anyway. Mom tried to make me understand that even though the surgery was over, these were the most crucial days and he still wasn't out of the woods yet. I asked to talk to him. Mom tried to prepare me for the fact that he wasn't going to be himself but I wanted to talk to him anyways. When he picked up the phone I said Hi! and he said hi in a little tiny whisper. I asked him how he felt and he just said tired. Mom took the phone back and said that that had tired him out and that he needed to sleep. I only realized at this point how scary and serious it was. The little guy that I had just talked to on the phone was not the little brother that had left a week or so before. Mom and Dad didn't tell us until after they got home with Christopher how serious it was because they didn't want to worry us. The surgery had taken so much out of him that it was a painful and long process just to get him to walk a couple steps everyday. He didn't want to talk but the doctors were trying to make him do a little bit more everyday so that he would get his strength back and so they could assess if any damage had been done during the surgery.

Finally, after four weeks or being gone, they were headed home. Christopher couldn't fly so my Aunt Louise and Uncle Roger were nice enough to contact a Chrysler dealership in London and arrange for Mom and Dad to drive a van home. It was really really emotional when they got home. I had never seen my Grand-mere cry until Mom walked through the door with Christopher and Dad in tow. You could tell they were emotionally exhausted and just glad to be home. I was soo glad to have my little brother back! He was still really weak and he had lost a lot of weight. But he hadn't had one seizure since the surgery! The doctors in London said that it was probably a good idea if he stayed on his medication for awhile and weened off of it slowly. So that's what he did and he hasn't had a seizure since then! It really is a miracle. They removed 8 inches of tumor from his brain, cured the epilepsy without causing any brain damage or at all. This is why I feel I need to give back. He would not have 1/5 of the quality of life that he has now if the doctors in London wouldn't have operated on him.

So back to Purple Day! Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy's goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy's idea which is now known as the Purple Day for epilepsy campaign. She chose March 26th as the official Purple Day date!

In 2009, the New York-based Anita Kaufmann Foundation and Epilepsy Association of Nova Scotia joined forces to launch Purple Day internationally. As the global sponsors of Purple Day, both organizations are committed to partnering with individuals and organizations around the world to promote epilepsy awareness.

The combined efforts of AKF and EANS have lead to the involvement of numerous organizations, schools, businesses, politicians and celebrities around the word. On March 26, 2009, over 100,000 students, 95 workplaces and 116 politicians participated in Purple Day.

This year was the second year that there was a Gala on March 26th held in Halifax for Purple Day. It was at the Atlantica Hotel and it was a blast!! Here are some pics of the night!

The ballroom at the Atlantica

Deirdre, president of EANS, who also suffers from epilepsy, giving her welcoming and thank you speech to everyone who made Purple Day a success this year.