Shave for a Cure

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On Monday,  The University of Ottawa Faculty of Medicine Smiling Over Sickness Group hosted their annual Shave for a Cure event in support of Childhood Cancer Canada. Every year, medical students raise funds, cut their luscious locks and shave their heads in support of Childhood Cancer Research. It was an honour to speak at this event and share Aidens story. Even more so to have two of Aiden’s school mates raise money and shave their heads for this cause. Thank you Emily and Bella! The event raised over $26,000 this year!

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 “Just Keep Swimming”, this has been my go-to saying through this voyage. September 2016 our family was thrown into this whole new world I knew nothing about. I had no clue what cancer was beside what I vaguely remembered from grade 11 biology class. Aiden had been complaining of headaches, sleeping a lot, frequent vomiting, and eventually unsteadiness walking. I had taken him to our family doctor, paediatrician even psychologist over the summer. We had no answers beside possible “viral fatigue” or a learning disability. I finally took him to CHEO, retelling the same story I had told so many times, they immediately sent him for an MRI. I will never forget when the doctor came back to the room telling me “we found a tumour on his brain and lesion on his spine” my response, “your joking right?” I think I was expecting cameras to jump out, how could this be real. And ever since that moment we have not stopped paddling trying to stay a float. To find safe land to rest on.

Aiden went for surgery almost immediately where after 16 hours they were able to remove a large portion of the tumour on his cerebelum, the lower part of his brain, also the part that effects motor skills, balance.  This surgery left him with something called Posterior Fossa Syndrome. He had lost his ability to walk, talk and swallow.  I knew he could understand and hear he just could not get anything out. This was devastating and I was told it could last anywhere from a couple days to 52 weeks. The tumour resected was sent off to pathology which came back telling us it was a type of cancer called medulloblastoma. One of the most common brain cancer in children. We were told radiation and chemotherapy were the only option. The side effects of Photon radiation offered here in Canada were devastating, no independent living, infertility, high likelihood of secondary cancers in other parts of the body.  After researching other options we learned about Proton radiation available in Boston which had less secondary side effects and more exact targeting. There is a lot more to this story but long story short, Aiden’s dad stayed at home with his two brothers, Lynkon 2 and Declan 6  and Aiden and I packed up and flew Ornage medical vac to Boston for 6 weeks of Proton radiation at Mass General and Intensive Rehabilitation at Spaulding. We traveled in ambulance everyday back and forth the Proton centre where Aiden was sedated everyday for treatment. He suffered such sever radiation burns down his spine that they cancelled his last treatment with fear of damaging with brain stem. While at the centre there was map on the wall with little stickers from where everyone came from and there was stickers from all across the world. Just before Christmas that year,  we finished radiation and came home for a break before we headed to Sick Kids in Toronto for intensive chemotherapy and more rehabilitation. While at Sick Kids they offered to try a “sleep aid” called zopedine on Aiden,  it had shown positive results in bringing speech back in some cases of mutism. I was told it would either work or not work. I have gone almost 6 months not having one sided conversation with Aiden, anything was worth a try at this point. Within 20 mins of giving Aiden the “sleep medication” we had our first real conversation while watching Aladdin, “I wish I had a genie in a lamp.” SO DID I!  It was loud and clear! His speech has progressed ever since.

After the second round of chemotherapy Aiden had a slight hearing loss and they decided to cut back one of the drugs – I asked if it would be ok and  if it would still work. They said they give children the same dose, sometimes higher, as adults and that  kids are much more resilient not to worry.  We stayed at RHMT and went back and forth to Sick Kids for appointments, numerous MRI’s, running into Emergency in the middle of the night because of fever, extreme weight loss, finally treatment ended and we came home to Almonte after 6 months.  We were told scans were good. Aidens appetite returned, hair regrew, weight gained but thinking we had beat this, that we had found our dry land, was short lived and December 2017 scans showed new growth. Just like we were swimming again.

What was left from Aiden’s resected tumour was sent for testing to see what trials were available and we were told to think of quality of life at this point. Being separated as a family for the last year was hard enough, not only on Aiden but with two younger siblings. We decided to return care to CHEO to be closer to home. We started an oral chemo to hopefully slow growth at home as well as canabis oil which I was dead set against before. I remember our last scan visit saying to the doctor, “I really can’t believe that there is no other treatment options available. One of the top cancers in children and this is all you have to offer!”

I look back over the last year and half and  I still can not believe what has happened and is happening. I have tried hard to stay positive and focus on the good around every chance I get. Trying to appreciate all the moments that make up life so much more. We have tried to create as many positive experiences and memories for the kids through this. One thing I always take a moment to reflect on is that we are not the only ones this is happening to. Childhood cancer is not as rare as I once believed. The hospitals are full, children are having their time stolen from them everyday, parents are searching for more and better options from around the world.  To everyone who helped organize this event and to all those who have raised money and are shaving their head today I thank you! There needs to be more research in childhood cancer, more awareness and better treatment options. And until there is we just keep swimming and never give up.”

 

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