Benny’s Story
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.