How is Aiden doing? The concern and care we have felt since we first found out Aiden had a brain tumour has been remarkable. Our freezer is full and we have had shoulders to cry on. From the surgery his recovery is going great! I can not compare him to the boy he was a little over 3 weeks ago but compared to the Friday after he came out of the 22 hour surgery he has made leaps and bounds! He has started physio everyday and everyday he gets that much stronger, he may never be an all star hockey player but he may not have been anyways or I really don’t know, he still might be. He is still on feeding tube but today he had a couple tastes of apple sauce and closed his lips and moved his jaw and swallowed, so we will continue to build on this everyday! He has not said any words yet but everyday more sounds are coming. The best is hearing his laugh and yes we hear it often (I have never been more of a comedian and my heart now lives to get that smile and hear that sound). All of his witz are there. He smiles when we tease about the “cute nurses” or he “fake sleeps” when the neosurgeron comes it for check ups and he does not want to do it. He is still Aiden in so many ways. And everyday josh and I are learning with him. Learning ways to communicate without words and learning to read his body language or face better everyday. It is all coming back slowly but surely. So when people ask how is he doing he really is doing great!
That being said, Last Friday, josh and I heard the words no parent (or anyone) should ever hear…. The pathologist report came back and Aiden has Medulloblastoma, a cancer. It is not very fast growing but there is growth on his spine and there is debris in his spinal fluid so it is considered high risk. They are recommending treatment of radiations for 6 weeks, break of 4 weeks and followed by Chemotherapy, this treatment has about 70% success rate, which I asked, and that is good. There really are not many options in this situation as they want to make sure they kill it all so not to grow back as it becomes more difficult to kill after. We are looking into other options of treatment to avoid the long term effects of radiation and what is in the best interest and quality of life for Aiden and our whole family. We are still figuring out what this really means and how we are going to do it but I do know since finding out Friday and trying to hold this all in and then now, slowly sharing what is happening a huge weight has been lifted .This has been allot to process not only how to treat but telling our family, our other children, our friends and even Aiden. He is doing so well we are devastated to have to put him through that much more. This is something we have realized we can not keep to ourselves and need stronger people around us when we can’t be strong.
I have always told Aiden “Never let anyone tell you you can’t do something, you put your mind to it and you can do anything. It is often after the biggest hurdles the greatest rewards are just around the corner” and no more has this been true nor will I have to take my own advice!
Thank you to our friends, family, community for all for your support and love. We have won one battle now we are fighting the war but Aiden has proven already he really is a “small fiery conquer!”

Medulloblastoma is a type of brain tumor. A brain tumor begins when healthy cells in the brain change and grow uncontrollably, forming a mass. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.
The brain and spinal column make up the central nervous system (CNS), where all vital functions are controlled, including thought, speech, and body strength. Medulloblastoma begins in different cells in the cerebellum, which is the back of the brain. The cerebellum controls body movement and coordination.
Medulloblastoma occurs most commonly in children. About 18% of childhood brain tumors are medulloblastoma. Approximately 70% of all cases occur in children under age 10.
Overall, the 5-year survival rate for children with average-risk disease is 70% to 80%. For children with high-risk disease, the rate is about 60% to 65%. For infants with localized disease, the rate is between 30% and 50%.
Source: Cancer.net

“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.”