So May long weekend of 2018 we had a successful harvest and came back home to get Benny ready and to try and shrink his tumour for a better chance at success with high dose chemo. June 2018 Benny started 25 rounds of radiation over five weeks that wasn't successful. It was extremely hard on his little body but he never complained about a thing even being put under 25 times in five weeks. He just did it so we just followed. At the end of July of last year with no more options and the tumour outsmarting every chemo regime, Benny was given James and I made the hardest decision we had ever had to make and agreed to Benny having a full colostomy surgery. It was the only way we could guarantee that we could beat the tumour. So on August 20, 2018, we prepared our selves mentally and physically for what would be Benny’s longest surgery. For nine hours Benny’s team worked so hard to make sure he would pull through and live a great life. In true Benny fashion he pulled through, the surgery was tough but our Benny was tougher. We spent three weeks in the hospital recovering and learning about our new life. Thank goodness Benny always had the best team, his paediatricians and surgeon always had our back and on days I didn't think I could live our new life they would be there to pick me up.
On September 6th as we were getting ready to leave hospital life Benny’s blood confirmed that something was going on inside him again and he was sent for a PET scan ASAP. The next morning our worst nightmare was confirmed Benny’s cancer had spread to his sacrum and lungs.
James and my family were taken into a small room and given our options. With our whole world being ripped apart we decided that as long as Benny was fighting so would we. He was our love, what we had waited for five years. When you're told your child is terminal I can't tell you what it does to you. I literally floated around for a day not really understanding what was happening. How could this be happening to our beautiful child?. A child that has spent the majority of his life in the hospital, a child that would worry more about the child next to us crying, a child that never cried getting a needle and let me tell you he's had hundreds. We left the hospital for one night and returned the next to start a round of another chemo. He lost his beautiful hair again but he still thrived and it seemed that the chemo was working and so on October 2018 Benny had a PIC line inserted into his arm and we left for the Children’s hospital in Calgary.
We spent all of October and November in Calgary and it was honestly the greatest family time ever. We stayed a month in a hotel with one of us trading off every night in the hospital and then we got to move to the Ronald McDonald house across the street from the hospital. The house was beautiful and it meant that we got to bring Benny home during the day because he rocked every treatment and appointment he had. Even his transplant days we got day passes to go back to the house and spend quality time together. We visited the zoo twice and got to spend time with family that would come to visit. The house really makes you feel at home and it was even hard to leave after being treated so well. Benny responded well to high dose and his stem cell transplant and we went home the first week of December. He was doing so well that even his doctors said they couldn't believe how good he looked. So James and I decided to do forward with Benny’s Make a Wish trip to Disneyland for Christmas. We were so excited to be able to get away and give Benny the BEST week of his life. Make a Wish had planned a fun-packed week. Benny was just over the moon excited and on December 19th we got to go. Like everything else that we've been through the excitement was short-lived as Benny fell ill on the second day and we had to take him to the Children's Hospital in Florida. A CT scan showed Benny had a brain bleed and he was immediately taken to the ICU and on the 22nd of December he and I were MEDI Vac’d back to Edmonton during the night. To tell you I was beyond scared is an understatement, I had just left James and my parents in Florida. When we got back to Edmonton Benny was taken in for a CT scan and I was told his cancer had spread to his brain and that it was super aggressive. His bleed was bad and he was struggling to breathe. He was taken to the ICU and I honestly can tell you I don't remember much more from that day. My brother and sister in law came and it was decided that Benny would have emergency radiation that day and the ambulance came and took him and my brother to the cross. He was brought back intubated and the doctors told me to prepare for the worst. They didn't think he would live through the night. My family came and James finally made it on a flight the next day. With my parents coming home on Christmas Day.