Archives for September 2016

“This place is the ultimate head game you map your move and then the air shifts and all the pieces fall down”

Aiden went for his seventh MRI today (I might have lost count) after having the drain put in on Monday the 19th.  They have been monitoring the brain fluid pressure and draining when it reaches 20 or above. For the last 42 hours they have “clamped” the drain and the pressure seems good. We may not need shunt, may not need another surgery. Dr. NZ says he booked the OR for today just in case though. 
As soon as I see Dr. NZ I know the MRI did not show what was hope for. So the surgery is a go and they take you right away. We walked down the hall as far as we are allowed the procedure has been explained to us and there really are no other options. 

They will use the same hole as the current drain and make a C cut behind that ear the valve placed under the skin and a tube will go through the belly and connect. The fluid will drain into stomach when the pressure gets too high and be absorbed.

We ask about complications and yes but we are told this is a pretty common surgery and kids that I’ve had brain tumour removal so once again we sit here and wait.
My aunt and uncle come today with apple pie and Lynkon. I have not seen him in a week. He is no longer crawling just walking it feels like forever since I’ve seen him last. There is so much of a change.  I am so happy he’s well taken care of but I miss him so much.
 Just out of 3rd surgery here at Cheo. We now have a shunt put in that runs under his skin and drains into belly if fluid pressure get too high. It is hard to tell from photo but he is looking much “brighter” the swelling has gone down quite a bit, he has more control over eyes and face (made a grimace for pain!) and made a sound today! We still do not know what the pathologist will say but we have a strong boy who is fighting everyday!

The morning consultation: quite whispers outside the door, a peek in, a glance in our direction. Same questions every day, can you open your eyes, can you move your foot, checking of swelling, checking of fluids, checking, checking, checking…. BUT today is different today they say he can move upstairs! It is a small step to some but in my world right now it is huge! It means he is improving. It gives me hope that MY AIDEN will return the witty, smart and strong boy who questions everything with his inquisitive mind. Although he is tentatively booked for a surgery Wednesday for a permanent shunt to regulate his spinal fluid it is not 100% that he will need it. He took his feeding tube out again somehow last night (4th time) so they are going to push to get physio in here to start working with him on swallowing and hopefully sitting up. He is a fighter and keeping the surgeon on his toes. The surgeon says he goes to bed with one plan for the morning but then gets here and Aiden surprises him with something new! Yes that is my boy! They say Wednesday at the earliest we will find out the “name” and things might change again but for right now it is a WIN!

Waiting, waiting, waiting… What is the next step… drain, no drain; surgery, no surgery; cancer, no cancer…. Right now cancer does not seem like the worst option, although, if God is reading this please don’t let it be that! 
My strong willed boy, my defiant youngster, I know you have fight but I see behind the eyes and I see that sparkle fade a little.  Everyday Dr. Nz asks you in an accented holier (like you are also hard of hearing) “Aiden, can you open your eyes?”  “Move your leg Aiden, Aiden move your leg”. I have seen you 10 minutes prior swat at the nurse or turn on your side but you now lay unresponsive. I can see you are fed up, frusterated with their questions. Through hand squeeze you seem to understand what we are saying. I believe you are deliberately not listening but, then there is that 10% that wonders if you really do understand. It is a constant battle with no words yet spoken. This silence is killing me. I wish someone could tell me something concrete. How long will it take for you to talk again? How long will it take for you to walk again?  Everyday I confirm with the doctors that your speech will come back. Dr NZ assures me it will. He says can be 2 days up to 52 weeks but on average around the month mark. What kind of answer is that? 

You were always such a talker, you talked so clear, in full sentences at 2 years old. I just can not get my head around this “cerebral mutism”. It just makes no sense. In all the studies I have read it says there is no real explanation, no medication, just waiting, waiting, waiting. I sit by your bed, you lay there in what seems like a coma or paralyzed, and I cry. More tears then I ever thought possible. What I would not give to take this from you. I just want to ask you how you are? How to you feel, are you in pain, are you uncomfortable, are you scared, sad, lonely but I can’t because I don’t want to project these feeling onto you if you are not feeling them. I did not expect this. I did now know…I AM SO SORRY.”

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.