In Memory of Sebastian

Sebastien passed away July 14, 2020 from dedifferentiated chondrosarcoma. This narrative was written and submitted by his sister Stephanie Desjardins.

In April 2019, my brother was diagnosed with a chondrosarcoma of chest wall on the right side with, what we were going to learn later was he had two metastases on his lung. He was supposed to be operated on Aug 1, 2019 but the previous day, his x-ray shows a progression in the lung, so the doctors decided to do a new biopsy and start chemotherapy six weeks later. The 2nd biopsy specified the diagnosis for dedifferentiated chondrosarcoma with metastases on both lungs. We knew at this time that the diagnosis was not good at all mostly because his doctor said that chemotherapy doesn’t really work, nor the radiation. The only way to save my brother is to do an operation but because of the lungs nodules they could not do it. They wanted to reduce the amount/progression of the nodules in the lungs before thinking about the surgery.

Stephanie and Sebastien (His last Birthday)

In October, everything was good, some nodules have reduced and others have disappeared, so doctors decide to continue until December and do the surgery beginning of January 2020. But on Dec 10, 2019; his x-ray shows a big progression of the nodules and demonstrate that the chemotherapy no longer works. Sebastien was placed on palliative care because they said there is nothing they can do. Later we will learned that the radiation Sebastien received when he was younger for his three brain tumors created this monster and that it was aggressive. In January, the doctors told to Sebastien that they cannot do anything more except give him medication to alleviate the pain and symptoms. Sebastien refused to die and wanted to try other types of treatment.

Sebastien liked to go with his family, his work colleagues or his friends.

We live in Canada and there are not a lot of specialists for chondrosarcoma because it is such a rare type of bone and soft tissue cancer. Sebastien’s doctors suggested different types of treatment but nothing worked. We tried twenty-nine days of radiation and chemotherapy as well as Votrient. Votrient seemed to work, but not in his lungs which at the end was completely full of nodules. Sebastien was having a hard time breathing and was taking fentanyl to control pain in abdomen. We also were not able to contact his new oncologist (the previous one was gone on maternity leave). We tried to calling for a month and a half and we never received a call back.

Sebastien and his best friend since elementary school Audrey.

Beginning of July,2020 we had to bring Sebastien into the emergency room because he had an intestinal perforation (caused by Votrient). It was apparently inoperable due to the fact that he was taking anticoagulants (because of a small pulmonary embolism). Sebastien decided to fall asleep completely because he couldn’t handle the pain anymore (even with the fentanyl and other pain medication) and didn’t want to be in pain at all. He died six days later in my arms, at 26 years old, after a year and a half of fighting this disease.

We made a complaint to the Ontario Medical Council regarding the last oncologist we had and are still awaiting a response from them. Sebastien never stopped fighting and always had hopes of getting back to normal. However, about five days before hospice care we learned that the cancer had spread to the liver and spleen. From that point on, I think he realized that there wasn’t much hope left. He continued to want to fight because he didn’t want to hurt us. Sebastien put his family before himself.

During the whole time of my brother’s illness, I researched treatments, I joined several groups on Facebook, I even communicated with doctors in the US and other hospitals in the country. I realized that there was not a lot known about treating Chondrosarcoma. It frustrated me and I discovered your foundation and decided to write to you so that I could share my brother’s story. Also, on the obituary we asked for donations in memory of Sebastien to find effective treatments. Just before he died, Sebastien was to start immunotherapy treatments but his x-ray results indicated that it should be canceled. I have summarized the bulk of his story because it would have taken me dozens of pages to account for all the details.

My brother had a slight disability due to his brain operations, but he never saw himself as different and he decided that his life he would live it to the fullest … in his own way. He was ambitious, always had his head full of ideas. When he was able to work, he found a job in a local home improvement store and then, he found himself a job in the carpentry business. He worked there until his 4th occurrence of cancer in April, 2019. He loved to work, made friends and was a sociable person. He volunteered at festivals during the summer, sold daffodils for the Canadian Cancer Association, built the Blue Dolphins team for the Walk of Life team to raise donations for the Canadian association of cancer. He was a survivor and I was his caregiver. We were always united, and we’ve never fought in our lives. Everyone who met Sébastien immediately loved him. His only regret in his life was that he did not have a girl friend, but he received so much love from his family, friends, and co-workers, he never complained.

My wedding day Sebastien was in pain, but he endured to be part of my special day.