Dr. Brian was there when we woke up. When I tell you that these neuro’s work an extraordinary amount of hours please believe me. These Dr’s are the smartest among us and we owe them a debt that can never be repaid. They understand from a young age that the gift they have will save lives and they work tirelessly for years to perfect those skills they knew they possessed from that early age. The amount of education, applied research and practical work required that eventually allows these Dr’s to work literally 100’s of hours a week is mind boggling. Imagine that you go to a combination of school and work for 15 years. Now you can apply to become a Neurologist. Kill yourself with work and education for another 10….now you can be a Neurosurgeon. We truly felt that we were in amazing hands from moment one. This ain’t a 4 year program and the education never stops. We are grateful for the dedication and sacrifice.

Like I said, Dr. Brian was there when we woke up and had probably not slept either. Behind the scenes he had meetings with another Neurosurgeon named Dr Fourney. If Dr. Brian is the Luke Skywalker of Neurologists Dr. Fourney is Yoda. I was setup for an MRI as soon as we were mobile on August 13th. The first images of that MRI can been seen below. Looking at Bob for the first time was shocking to my family to say the least. It was devastating for them. The tumour (Bob) was huge and pressing against my cerebellum leading to the balance issues as well as blocking the cerebral spinal fluid “drains” leading to the puking and hydrocephalus. Bob was working as hard as he could to kill me and would succeed in the next number of days unless something was done. Removal and immediately was the only option. My dad and Dr Fourney talked about survival rates and that I would very likely be left permanently deaf as a result of the removal. I was so strong…so strong telling everyone that I would learn sign language and they had all better learn as well. Dad was nervous and asked Dr. Fourney if maybe we should look stateside or get a second opinion. I can’t blame dad for asking, he had just met Dr Fourney and was doing his best to make the best decision for me. When dad asked about leaving and possibly flying to a Mayo Clinic or another option (his mind certainly racing) Dr Fourney said something akin to….

“If you choose make that decision Neil, and that is your choice, I will take immediate steps to remove Mia from your care. I will petition the Saskatchewan Government to become the primary care giver for Mia and I perform this surgery. You will be unable to be part of her recovery and although you are making this decision with the best intentions you are making a decision that could have catastrophic results for your daughters health.”

Or something to that effect. It had profound effects on dad. From that moment his belief in Dr Fourney was absolute and unwavering. Mom and dad were certain that the right person had come into our lives. It must be hard to be a dad when your little girl gets so sick so fast. It must be hard to give your daughter to someone else and believe you have made the right decision. Dad and I were taking some time on a beach one day and he asked me if I ever thought about death and what that might look like. I don’t think about death or losing to this tumour. I really don’t. I told my dad he will always take care of me. It’s easier to not think about the hard stuff when you believe in your parents. My dad is like Dr Strange. He thinks of every possible scenario or road black that I could come up against and thinks about every circumstance we could encounter and wracks his brain to try and be prepared for those situations. My dad is like Dr Strange and Dr Strange is my favourite Avenger. But even Dr Strange knew the odds.

Late in the morning I was prepped for surgery. My hair was shaved. I looked cool and still do. We wheeled down to surgery and were met by the Tumour Team. Mom and dad tried to be so strong but they could never be as strong as I was. The only time my strength wavered was when they had to leave. It was hard letting go. This could be the last time we ever held each other and we all knew it. For the first time since we came to the hospital… I cried. Then I fell asleep.

Hey it’s Neil here (dad). Any parent reading this can imagine what its like to walk away from your child at a moment like this. Megan and I tried to be so strong for Mia up to this point it was almost impossible to maintain that strength after we left her in the pre-op room. Megan immediately sank into my arms and chest and was almost beyond grief. We were standing right outside the OR doors and our family was waiting for us upstairs near the ICU. We would have no news for them other that Mia was strong and ready to accept whatever was next. The operation would last nearly 7 hours. We were so tired. Our family and friends have no idea what their support meant for us that afternoon. Anxiety and stress can have extreme effects on both your mind and body and that 24 hours was tough one for myself and Maggie….the worst in our lives. The sickness in my stomach almost had life all its own. It had a taste and smell almost as if it was alive and eating me from the inside. That burn of pain you feel in your throat when you are trying so hard not to explode into tears of despair or rage is ever present and just moments from being unleashed. Fear, panic, dread and desperation are rapidly replaced with moments of resilience, strength and tenderness. Make no mistake, Megan is the resilience and tenderness part of this story. Megan is the love part of this story. When you are facing the situation that we were facing that day, one can become overly pragmatic and almost stoic. When faced with possibly losing my daughter I could feel hardness beginning to grow in my chest. I was absolutely losing my mind. Completely helpless in the face of losing her. On one hand being mentally exhausted and emotionally fragile and on the other wanting to be so strong that no emotion and only rock solid strength was, I felt, my only option. I could not have been more wrong and the love of my life could not have been more perfect that day. To exhibit the tenderness and love that Megan showed that day is a true testament to love in the face of fear and uncertainty. We waited for news with our family. We traded uneasy looks and nervous “it’s going to be OK” hugs. We had no idea what was in-store for us for the next 6 hours never mind the next 128 days or even beyond that. In any case…Megan is the reason that we as a family would survive that day or the next hundred.

Dr Fourney did some amazing work to remove Bob. I should mention that the night we came in and found out that I was sick my dad, who is not funny (I actually am), named my tumour Bob. It’s easy and fun but Bob has a middle name and I’m not allowed to repeat it. The MFer. Anyway!!! Everything went well and they almost had all of Bob. Dr F was certain that the last bit would come as the first bit had. Unfortunately that was not the case. My heart stopped would stop on each attempt to remove the last bit. The last bit that was attached directly to my brainstem. It was determined that further action towards removal would be fatal or at the very least, leave me severely paralyzed. It was also possible that the last bit that DR F was working so hard to remove could possibly not even be tumour at all. In fact maybe they were removing an affected part of the brainstem, It was hard to tell early on. In any case it was time to sew me up and start the long recovery process.

Honestly the next number of days can really only be described through the photos that my mom and dad had taken while I was in the hospital. For the first few days after the surgery I was sleeping and don’t remember much of anything. Mom and dad stayed with me as well as at some very good friends houses. Catching a precious few hours sleep when they could. Every nurse we talked to would tell mom and dad about Ronald McDonald House. They wouldn’t hear it. They wanted to stay with me but after those first 36-48 hours it was becoming impossible to function for my family. They called RMH and they didn’t realize it but “The House” was about to become a central character in this story. We stayed there for 128 days, my entire hospital stay and every single day at RMH was a gift. This story would be very different and quite possibly a harder one to tell if it wasn’t for RMH. We owe them so much and that is another reason I have started this campaign. We will give back to the house that love built. Between the four walls and the people….they saved me and my family.

During those first few days in the PICU I was sleeping and I hated it. My strength was again on display. Mom and Dad knew that I needed that sleep but its hard to sit idly by. I fought to wake up as hard as possible. Waking up is a bad idea and I didn’t care. The team of Doctors fought just as hard to balance the right amount of drugs to keep me sleeping but not too deep and not too light that I wake up. I didn’t care and I was waking up. Dad leaned over me not knowing whether I could hear him due to the fact that I might be totally deaf or too deep in my sleep and said “it was OK to sleep” …I shook my head…a sign of life…I heard him say “it’s OK Mia …Bob is gone” and I drifted off to sleep without anymore fighting for another 2 days.

TIME TO WAKE UP

I woke up in a bit of a panic. Life had changed pretty drastically for me and it was a bit of a shock waking up in the PICU. Of course Mom, Dad and Macywere there as were photos of all my animals so that made it easier. To be honest this is where the real work started. It’s very hard to tell that story and there are numerous moments over the next year that are amazing, heartbreaking, joyful and devastating. Sharing some of those moments at this time is tough. I want everyone to see where I am now and what I have done but the story is long and the details are getting personal. Someday I might update this story to tell you about the time I choked and dad had to give me the heimlich and thought he killed me or the time we found out I was cancer free. I would like to share some times that I was the strongest girl in the world getting my eye sewn shut to save my eye sight (twice) or getting most of my face peeled off to replace the damaged nerves. The moment when I had to have the staples and the drain removed from my head and at that moment I was DONE with needles. I wouldn’t allow any freezing and told Dr Brian to get them out and get it over with. They went ahead with the procedure with no freezing and I didn’t flinch. I held my dads hand and closed my eye. Dr Brian who has seem some serious stuff said he had NEVER seen anything like that and my strength was extraordinary. In the last year I have learned to walk again I have learned to talk again, I’ve learned to swallow, to speak and I’ve learned that there is NOTHING that neither myself nor my family can face and not win. I did these things not by chance but through countless hours of rehab and hard work. I would like to share those details but it is getting increasingly hard to tell the story and I think my dad is emotionally worn out trying to help me tell it.

Here is what I will say. This horrible situation has left me without the full use of my right arm and leg. All of the artwork you see has been completed by learning to use my left hand. My face is still fully paralyzed on the right side and I am totally deaf in my right ear. Also, my brain tumor is still with me and is working hard to do what brain tumor’s do and thats to kill me. It is inoperable. There is no surgery that can fix this nor is there any viable radiation options in Canada. NONE. Any radiation option available in Canada would either leave me severely disabled or at worst, end my life. Proton therapy in either the UK or the USA would be my only option for long term survival. Can you believe Canada does not have a clinic? Even though Bob is not technically cancer on a cellular level we talk to cancer Drs all the time because Bob is a tumor attached to my brainstem and he’s working hard. But not as hard as I am.