Jocelyn Ducharme
Jocelyn was diagnosed May 10th 2019 with a very rare, aggressive form of brain cancer, Atypical Teratoid Rhabdoid Tumor (ATRT). She was only 17 months old. Roughly a month before diagnosis she began vomiting daily and started becoming very lethargic and dazed much of the day. After being misdiagnosed with the flu for a month straight, she was finally given an MRI which showed the very large mass. The day after the tumor was discovered she underwent her first brain surgery. During this first surgery a shunt was placed to relieve built up spinal fluid as well taking a biopsy of the tumor. After it was confirmed to be ATRT she was sent into 2 rounds of high dose chemotherapy. Following these rounds she had her 2nd brain surgery to remove the mass. During the surgery Jocelyn suffered a small stroke which caused some weakness on her left side. Jocelyn made a full recovery after about 3 weeks. Following the surgery she went into 3 more rounds of high dose chemotherapy with 3 bone marrow transplants. Following all rounds of chemotherapy we brought Jocelyn up to Seattle Children's Hospital for 6 weeks of Proton Radiation Therapy. Following all these treatments Jocelyn had a clear MRI & Lumbar Puncture at the beginning of March 2020, and was declared cancer free March 11th, 2020.
Sadly this isn't where her journey ends.
Jocelyn had a routine MRI July 13th, 2020 which showed yet again another tumor. This tumor was completely removed a week later during her 3rd brain surgery. Following the surgery she was entered into a trial involving the drug Alisertib. After 2 rounds of this chemotherapy treatment Jocelyn's team performed another MRI to check on the effectiveness of the drug. Unfortunately the scan revealed Jocelyn's 3rd tumor. After a couple weeks of deliberation on what was the best next move we decided on having the tumor removed. Jocelyn had her 4th brain surgery October 14th, 2020. Her surgeon was able to remove approximately 85% of the tumor, without causing any damage to her development. After the surgery Jocelyn went into a chemotherapy protocol called MEMMAT. After three months of being on this protocol her tumor remained resistant and continued to grow. We were quickly running out of options. We then began a targeted inhibitor chemotherapy called panobinostat, but yet again this treatment failed us. Jocelyn had her 5th brain surgery on May 11th, 2021 which happened to be exactly 2 years after her very first brain surgery. 85% of the tumor was safely removed with only about 1.5cm remaining. We then packed up our family and headed to Dana Farber Cancer Institute in Boston, Mass. Jocelyn was accepted into an immunotherapy trial that showed so much promise. This may be our big break, so we thought.
Her next MRI scan at the end of July, 2021 showed us our worst nightmare possible. Jocelyn's tumor grew to 6 cm in size, as well as spread to 3 other locations in her brain that had never been affected by disease. Our fight was coming to an end. We made the decision to bring Jocelyn back home to Utah and push one last time with an intrathecal chemotherapy. This began looking promising with some shrinkage in the new growth tumors and stability in her largest one. On September 10th, 2021 the world came crashing down on us like a ton of bricks. Overnight Jocelyn went from the happiest little girl, to being in severe pain, no longer having the ability to bare weight on her lower body, sit up, or talk with us. Her tumor grew in a smallest way that caused her brain to lose blood flow and causing the drastic change. Days later we sadly had to make the decision to stop all treatment, and bring Jocelyn home on hospice care.
Jocelyn passed away beside her 2 favorite people in the world, Mommy & Daddy, on September 28th, 2021. Jocelyn will always be remembered for her contagious smile, laugh, positivity, and bright light she shined on the world.
You are forever missed. We love you, sweet girl.