Like true Benny fashion he fought like hell to stay with us and after 55+ days we went home. they told us he would probably never walk but with his amazing physio team, he showed everyone he was braver than ever. He went through another 12 rounds of full brain and spine radiation and things looked good, tumours were shrinking and he was doing good. We celebrated every milestone and every day was a true blessing. I’d love to tell you life was easy but it was hard, harder than ever, but he kept going so we did the same. At the end of March, he started to have a facial drop on his left side and he was having trouble with his words so we took him to the hospital and again an MRI showed another bleed. The tumours were not only outsmarting chemo they had outsmarted the radiation. The tumours where back and against the palliative team's recommendation we went through with another 12 rounds of radiation. They told us to celebrate his fifth birthday ASAP and we were taken back up to the ICU where the palliative team talked to us about making Benny’s final arrangements. Little did they know that our boy was not ready to go he still had his birthday to celebrate. You see Benny loved celebrating birthdays especially when he got to pick out the car cakes. We left the hospital on April 12th and on April 25th celebrated his birthday at home with everyone that loved him the most. With of course a cars themed birthday.
On May 7th we returned back to the hospital as Benny was not feeling well and later that night had two bad seizures. With no more options and him being to sick to come home our boy was surrounded by so much love and cuddles and storybook readings he left us in the early morning of the 25th for the most beautiful place ever. He looked more beautiful than ever. He fought so hard to stay with us but his little body just couldn't take anymore. This story is only a quick summary of Benny’s journey I could write a book on the amount of stuff he went through. We celebrated his life on May 29th with the most amazing family and friends.
The Benny Brave Foundation was started because of Benny’s love of helping others. Anyone that had the privilege of getting to know him will tell you how full of love he was. He loved and tried everything in his short five years. Yet he was fierce but had the most gentle spirit. He loved his family and friends so unconditionally. His love of outdoors, his dog, the Eskimos and Oilers and especially cars. He owned so many cars and knew every make and model and who drove what. It was pretty comical that this little five year old would ask doctors, nurses, strangers what they drove.
I have no words to even tell you how much he's missed every day. His laughter, his beautiful blue eyes, and his infectious laughter. He gave the best hugs and knew the people that loved him. Throughout our journey, we had many organizations and people that gave us the opportunity to be able to stay together. With the help of Benny’s paediatricians they will pick five families that could use a bit of a boost this year. And these families will receive a Benny Brave bag full of gift cards, books, toys, and other great stuff. And hopefully, as the years go on we will be able to help more and more families yearly. But best of all we will be able to talk to everyone about Benny and how brave he truly was. That's our goal, for everyone to spread the word about Benny and Childhood cancer and to help cheer up the day of a family fighting the hardest fight of their life.