Our Story

Our story began on July 2nd 2016 at the KOA campground in Cardinal. I had looked forward to taking the kids to the local KOA for Canada ever since I booked the camp site way back in Feb as this place is so kid friendly it books up very quickly.  By Saturday however, our world as a family would be changed forever.

We awoke Friday am with everyone sleeping in past 7. I was the first to get up with hearing Marnie moving around and Ada sitting up on her bunk. Marnie put her nose up the mesh as she had in times past when using the tent and we laughed as I rubbed her nose. I got her out and was preparing to get her drink of milk for the start of breakfast and passed her off to Becky when she began to vomit…..a lot. It appeared to us that is was clear fluid so maybe some built up acid. We went through the list of everything we had fed her being lactose intolerant but could not really figure out what could be making her sick. I suggested to Becky to take her home to get some rest in her own bed and see how she is in the morning…..if she was better than we were only a half hour away to coming back down. In the morning when I did not hear anything from Becky until I woke her at 8am, which is so unlike Marnie to sleep that long, Becky said it was a rough night. Fearing dehydration, we decided to take get her to Kemptville hospital to get checked out. A short visit to the hospital showed no red flags to the Doctor who felt that Marnie was fighting a virus and was obviously tired from being up all night. We were told to keep the fluids moving and head home for rest. I returned from the campground as well by this time and we monitored her closely.

After about an hour of being home, I went to wake Marnie from the nap she was having on the couch and when I did this, I couldn’t wake her up. Grabbing her and rushing her upstairs we tried several things to wake her to no avail and then Becky opened her eye lids and that’s when we realized that one pupil was dilated and the other was the size of a pin head. I called 911 and within the span of two hours we arrived at CHEO from Kemptville Hospital and into a CTSCAN where we were diagnosed with a tumour on her brain in the back left side that measured 7cm by 5 cm. We would later come to realize through pathology reports that Marnie was diagnosed with an Embryonic Tumour with Multilayer Rosettes (ETMR), a very rare and deadly infant tumour that develops in the brains of babies.

Our treatment journey has seen us travel through three tumour removal surgeries at CHEO followed immediatley by three rounds (months) of intense chemo. We then left for three months of stem cell transplants ( Three in total) at The Hospital for Sick Children in Toronto. We arrived back to CHEO and quickly went into  thirty three rounds of radiation treatment. We continue to receive chemotherapy through her lumbar punctures each month and MRI’s every other month to monitor her. Each  LP was followed by two weeks of  oral chemotherapy which we administer monthly at home. Only through the power of prayer, our faith in God and the amazing specialists, doctors, nurses, therapists, nutritionists, case workers and inter link nurses are we be able to claim that Marnie is Cancer Free.

It is safe to say that we have been witness to the system for well over two years now and we have come to realize that there are things that we would like to do to help advocate for some change….I believe that it needs to start somewhere!! We have moved from the red zone into the yellow zone with hopes of remaining in the green zone  for a very long time.

The Miracle Marnie Foundation has been created to aid in making a difference through education, lobbying (both Federal and Provincial Governments), support (both financial and non for families and programs) and providing a voice for the countless hundreds, if not thousands of families who are in the childhood cancer fight.

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