September 17th, 2016 ~ After first finding out yesterday and the urgency of surgery to remove the “Bad Guy” The neo-surgeon, Dr. NZ (not real name) decided to put a drain in first. As I am by no means medical, Dr. NZ’s analogy was that this is a war, there is the “Bad Guy” we need to attack but we need to conquer this smaller battle first so that we are not surprised when we go to war with the “Bad Guy”. It was a 2.5 hour surgery but seemed much longer. Watching the clock, counting the seconds. The surgeon wanted to observe the pressure of fluid in Aiden’s head to see if by changing the pressure it would move the tumour. Because of where the tumour is located and the size they are concerned that a significant change (removal of bad guy) might cause that area of the brain (which controls motor functions, breathing, etc) to sling back like an elastic and snap (the example the surgeon gave or close to it). After the drain was put in Aiden was observed some more and sent for another MRI. The drain seems to be doing its job, nothing has moved which is a good thing. The team of neurologists will meet tomorrow to review and determine if they should send Aiden for another test (more invasive and they don’t do it here) or if they have all the information they need to successfully attack the “bad guy”. The earliest he would go for surgery would be Wednesday unless things change. So it is good news in a way, a slow step, more waiting.
“You will never know, until you know what it is like to watch your child being poked and prodded and poked some more.
To scream out. To lose control. To cry out in hunger. To have no answers.
To sit on the sidelines. To have no control.
Spinning in a daze somewhere between exhaustion and adrenaline. They say one day at a time and I get it I do but it dose not change this pain we feel.”
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. If you follow Aiden’s Voyage on MamaOutpost please consider making a donation to help with medical expenses and daily living expenses for our family. December 2017 we were given a life expectancy of a couple months. We are now in year three and fighting everyday to beat this awful disease but with that I have been unable to work and at this time have exhausted all funding sources. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)