It’s been a long time since I last posted but, now an update is needed (long overdue actually). 2016 had been a great year up until two weeks ago… I returned to work and loved it! I gave birth...
It’s been a long time since I last posted but, now an update is needed (long overdue actually). 2016 had been a great year up until two weeks ago…
I returned to work and loved it!
I gave birth to a beautiful baby girl, 6 weeks ago, Aubrey
Things were really looking up, and then I had my regular 3 month check up scan and that all changed.
I wasn’t expecting anything to come of it as I was attributing all of my headaches to being pregnant and then not sleeping great since Aubrey’s birth. Unfortunately, that was not the case.
The scan showed a significant new growth behind my right eye. It appeared to be growing from the skull bone inwards and pushing into the area of my original tumour. It had Dr. Perry and his team totally stumped and we left with no idea what was going on or with a plan. Needless to say the waiting has been hell!
We were back to see Dr. Perry last week after he was able to arrange a meeting with many of the top neuro-docs in North America. None of them had seen anything like this happen with an Oligodendroglioma. These tumours are typically very slow growing and no one can figure out how such a large tumour appeared in such a short period of time. There is absolutely no trace of it on my May scan, even when specifically looking for it. The larger team also discovered two additional tumours at the base of my skull on my spine. (I am having a full spine MRI done tomorrow to see if there are any more tumours there) So, more heart-crushing news.
At least last week we left with a treatment plan. As I have already gone through all chemo regimes for my tumour type and we can’t re-radiate the brain again, so this time we are going to be trying immunotherapy. I don’t know much about it at this point, but Dr. Perry seems hopeful that it will control the growth for “awhile”. He is also going to investigate any clinical trials and/or additional treatments that may be available in the States. The immunotherapy is given at private infusion centers, and of course the province doesn’t cover it. The hospital is helping me get funding and find a center close to Guelph where I can receive it. It is given intravenously, similar to chemo.
We are all in total shock! We are totally heart broken and just trying to get through each hour right now. 2016 was the year things were finally looking up for us.
Nothing else yet as we are all still numb….
Thank you for your prayers, best wishes, and support.
