Oct 29, 2019 Latest post:
Sep 15, 2022
Jace's journey started on September 21st when his dad noticed a his right thigh was bigger than his left. Blood work showed there was no infection so an MRI was set up for the following Friday. That Saturday morning, before we headed to his flag football game, we learned that there was a large mass on his right thigh and they were worried about possible sarcoma (cancer of the soft tissue). After an EXTREMELY hard weekend, we met with a specialist in Sioux Falls. Tuesday he had a CT scan which showed no other 'lumps or bumps' inside him (yay!!) Then Friday a biopsy. Another LONG weekend with no answers. Then an entire week with no final results. We were told that the preliminary results showed low grade sarcoma with other 'weird' cells but then nothing. After making several phone calls, I was told that the Sioux Falls pathologists were unsure of what it exactly was and that Jace's biopsy went to Mayo Clinic. October 17th, we met with Jace's pediatric oncologist and his surgeon at Mayo. The meeting lasted for 2 hours. We went to Mayo under the assumption that he would be having surgery to remove the mass and then MRI's and CT scans for 10 years of follow up (easy-peasy!) When we got to Mayo, they had different ideas! (I guess there is no such thing as 'easy-peasy cancer). The mass was too close to the bone for the surgeon to remove it comfortably with getting all the microscopic cancer cells....he was pretty sure that after surgery we would have to have radiation. Plus the amount of muscle mass that would be removed from Jace's thigh would be 'morbid'. Our pediatric oncologist had a different option for us....
Jace has an extremely rare cancer (only about 50 diagnosed each year and 5 years ago it was classified as unidentifiable sarcoma) his cancer is: NTRK rearranged mesenchymal sarcoma. There is a brand new drug out that specifically attacks the 2 DNA strands that make up this cancer. The phase 1 of this study had incredible results. This medicine has shown to reduce the tumor by more than 40%-90% in as little as 4-9 months. Jace started his medicine last Friday and has no side effects (praise God!)