The Benny Brave Foundation is a tribute to our son Benjamin “Benny” Sieben. Our story begins on April 25th, 2014 when our Brave boy was born fighting into this world. Benny was diagnosed with a Sacrococcygeal teratoma at my 20 week ultrasound. This type of teratoma is what is called a germ cell tumour and originated from his tailbone. Most germ cell tumours have an 85% cure rate. As soon as Benny was born he was taken to the Stollery Children’s Hospital where he had major surgery to remove his tailbone and reconstruct his backside. The days following his surgery he spent 12 days in the PICU and then was transferred up to 4D the surgical ward at the Stollery. Benny had the BEST team from the start so on May 14th we got to bring him home and just live a normal life and snuggle with the most beautiful baby. Life was great when pathology revealed that Benny’s tumour was not cancerous.
Life was great and beautiful, Benny thrived and we kept up with all his appointments. But in the spring of 2016 our life was turned upside down again as a routine exam revealed Benny’s tumour was back and cancerous. He had surgery that followed after the diagnosis and four rounds of chemo. As a mom, I was devastated and heartbroken as we spent the whole summer in the hospital but my mom brain knew this is what we had to do. We were lucky enough to slip away for a week to the mountains because our family was here from Cleveland. Life was different, even just traveling with an immune-suppressed kid you have every worry in the world. Will we need a blood transfusion, will he get a fever, what happens if he gets sick, what if he has pain from his bone marrow recovering, do I have all his meds, the list goes on and on. But we did it, we got through it and in the end Benny rang the end of treatment bell and we walked out of the Stollery the most grateful and strong family ever. We celebrated with a Benny party at the end of September to fit in with Childhood cancer awareness month and everyone brought a stuffed animal that we donated back to the Stollery oncology ward in Benny’s name. 121 stuffed animals to be exact.
Life returned back to normal and we enrolled Benny into preschool and swimming lessons, we traveled again and enjoyed every moment that we were so grateful to have. Again, Benny thrived his hair grew back and he was happy. The following spring of 2017 routine blood work confirmed our worst nightmare and showed that Benny’s tumour was back. Our team made yet another plan, Benny had another major surgery that was followed up by nine rounds of a different chemo regime. Everything seemed to be going well until his bone marrow started to have a hard time recovering from chemo and just before the start of his seventh-round blood work showed that the tumour was outsmarting the chemo. At the beginning of May, it was decided that we would go to the Children’s Hospital in Calgary to try and harvest Benny’s stem cells to move forward with high dose chemo followed with stem cell rescue. 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.
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 May 24th 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.
I will keep this page updated, so stay tuned for some super fun stuff coming! And please like the Benny Brave page and share, share, share this page to help us make a difference. We are also working on a webpage coming soon. #Bennybravefoundation
Vanessa (Benny’s mom)
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