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%.
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. 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 I have been unable to work in order to care for Aiden and receive no child or spousal support and very limited social service funding. Donations will help with all of the medical, travel, and accommodation expenses that I have incurred over the last three years as well as those expenses that are still coming. Donations will help with daily living expenses and will ensure the boys have great memories together for whatever time we have left.
If you follow Aiden’s Voyage on MamaOutpost please consider making a donation. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)