September 20th, 2016 ~ Yesterday was pretty calm which was nice but also LONG! Today, Aiden went for another MRI and he is booked for surgery tomorrow at around 8 am. The surgery tomorrow will be 12-16 hours so it will be a very long day. The surgeon is feeling positive but can’t really tell me what to really prepare for just refers me to the full sheet of possibilities. I tell him to tell me he is feeling good so I will feel good. I just want a concrete answer of what will be even though I know he can’t.
The tumour is large and has grown or rather burrowed into what sounds like part of the brain too and the surgeon can’t really get to it but he will know better once in there. He says he is prepared to go to war tomorrow, to fight the bad guy. I am told the surgeon is the best and has been doing this for many many years and has done 24hr surgery before. They did say most likely one surgery and then they will send piece away to find out the name and decided on additional treatment. Most likely when he gets out his balance and eyes will never be the same but I feel that is minor on the grand scale. I know after tonight my Aiden will never be the same so I am just enjoying this time with him to the fullest. CHEO — Children’s Hospital of Eastern Ontario has been amazing so far and has set us up with some additional support workers to help us deal with all this.
This is truly a journey I never thought I would be on. I still don’t believe I am on. I don’t know what tomorrow will look like and I don’t know what a week or a month will look like. Because of that I wanted to send this out tonight because as I have learned life changes all to quickly.
Thank you for the great visitors we had today, Izzy and Conlin his buddies. Having you here meant so much to him and too see him playing meant so much to me and Josh Verk.
Thank you Nancy Robertson for the Fair “survival kit” you sent! Thank you for all the messages from the Carp Fair family and Joyce Trafford for keeping me sane as I send rambled venting texts well into the evening. Thank you to Jeff Fotherby and Christine Fotherby for all your support and coming to visiting making sure I eat and keep sane and for taking Such good care of Declan who looks like he will never want to leave your place when this is all done! Thank you dad and Sue Fotherby, knowing Lynk is well taken care of and being loved is just one less thing I have to consider. Thank you Leena Verk for well, being you! Being the spark in aidens eye when he sees you or starts getting frustrate! You are the best Mumma and Lego builder around. Thank you to our Happy Horseshoe Camping Community dad has updated me on the park and all the well wishes. And thank you to all the people out there praying and sending good vibes our way. I can not begin to list everyone it is overwhelming. I never knew I had so many people in my life. I am terrified for tomorrow but as I sit here and write this and actually examine all the kindness in my life I know I am truly blessed and loved and so has Aiden been and that will never stop.
“Aiden lit right up when he saw the Pokemon! His little brother was here visiting too and his cousins. I can’t even describe the fun we had eating candy apples and caramel popcorn. Declan, Aiden and I all shared one Apple to start which was comical enough but Aiden has no front teeth so I kept having to bite him off chunks and feed him, I said like a baby bird. He laughed. Then his brother left and Aiden asked if just me and him could share one more apple and cuddle. The nurse came in the room and she laughed because everything was so sticky and there is red drops of juice all over the floor. I assured her we did not have a blood battle in the room contrary to what it looked like. When the night nurse came in to give Aiden his bed bath she said “Oh my you are sticky everywhere, you still have some on your face,” to which Aiden replied “I’m saving it for later!” I even gave one apple to his nurse who had been with him the last couple days and has been amazing! I then asked Aiden if he liked all the visitors he had today and with a smile he said “even the Carp Fair visited me!” which was pretty sweet. It was a perfect night, just what he needed before his surgery tomorrow. My words do not do the moment justice” (Private Message to Nancy Robertson for the gifts she had sent from the amusement company)
I include this message in my post as this was the last time Aiden was talking and moving around. As I write this tears stream down my face holding onto this memory. He was in such good sprits and we were all joking and playing and he was chatting and telling jokes and just being a 7 year old. This moment seems like a lifetime ago but is was only 20 days. As the days pass I forget what life use to be. I try to hold onto the memories of the early summer, swimming and catching frogs and running around carefree. It is so hard to sit in the hospital day in and day out and chat in one sided conversations. And although the doctors assure me his speech and movement will come back it is hard to believe that he will truly ever be the same.
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)