Sean at age 9 (currently 11), was unexpectedly diagnosed with a rare brain tumor called intracranial myxoid mesenchymal tumor on the brain, a type of CNS Sarcoma.
Sean story started, in April 2017, when he went to see his pediatrician for his 9-year-old annual well child visit. During that visit, it was discovered that Sean had drastically lost weight during the past year.
Sean was initially referred to and then worked with a nutritionist for several months but hardly gained any weight. Due to Sean’s lack of progress after following the nutritionist’s food plan, we returned with Sean to see his pediatrician, and requested blood work. The blood work revealed that Sean was severely anemic, and the new concern was that he was bleeding somewhere inside his body. Sean’s Pediatrician contacted the hematologist at Children’s Hospital of Pittsburgh, but we were told that the blood work results did not indicate a hematology issue.
Continue reading on the next slide
Sean was then consecutively referred to see multiple specialists at Children’s Hospital of Pittsburgh. They looked into possible consequences from Sean’s overseas travel the year prior. In August 2017, he was admitted to the hospital for GI work up, but his results turned out mostly normal on their end, and Sean was discharged a few days later.
We returned to the hematologist to look deeper into Sean’s case; but again, it was deemed that Sean’s case was not a hematology issue. Sean was then referred to and saw the rheumatologist, and yet again, everything came back basically normal. Sean’s blood work was pretty consistent, but with inflammatory markers worsening.
After months of doctors appointments, none could figure out Sean’s issue. As Sean’s hematologist was about to send Sean on to the next specialist, he changed his mind and decided to bring him in for a whole-body MRI.
On October 22, 2017, approximately 6 months after Sean’s concerning well child appointment, Sean was scheduled to have an MRI, and that is when it was finally discovered that he had a golf ball size brain tumor on the lining of his brain. He had his first brain surgery on October 24, 2017. Pathology of the tumor came back and showed that it was a type of CNS Sarcoma called intracranial myxoid mesenchymal.
Sean is the first and only case in this area, and we were told that there were only approximately 20 cases like his in the entire United States. It is so rare that it is a significant challenge to find concrete information about this disease and the best path for treatment. Sean’s tumor recurred on March of 2018. This led to his second brain surgery to remove the tumor on April of 2018, followed by radiation treatment.
To date, Sean’s brain tumor has not recurred, but we continue to live in fear as we try to cope with the effect this disease and treatment has had on his and our lives. Sean continues to be a happy and positive child, but this experience has changed Sean and our family. Sean is now much more impulsive, and he now struggles with his learning in some areas.Thanks for Reading!!!