Case was a wonderful, father, husband, and friend. He fought so hard and we miss him so much.
Please help honor his memory by supporting his family. We lovingly nickname this, "Rylee's Pony Fund," because honestly, wouldn't Case have gotten a kick out of that?!
Please help us shower Heather and Rylee with love and support.
On May 2nd, 2018 Case was diagnosed with an aggressive Sarcoma in his right calf. This tumor was 12cm in size at diagnosis and nestled below his knee with blood vessels running through it. The mass was labeled as non-operable as it was and he began his first rounds of chemotherapy to treat it.
After 6 weeks of chemotherapy, Case got scanned again with additional scans on his lungs and spine. It was discovered that he had a spinal compression and edema in his middle spine (as well as nodules in his lungs) and he was ordered to report to the ER immediately.
Case spent the weekend at the hospital while his Doctors determined the best course of action. That Monday, Case underwent a four-hour surgery on his spinal cord. They removed 80% of the tumor but were unable to fully remove it due to its close proximity to his spinal cord. Unfortunately, they found the tumor to be containing the same spindle cell sarcoma present in his leg.
With 20% of the tumor remaining, Case underwent radiation on his spine. Unfortunately, after adverse neurological effects (numbness above the knee and on the left flank, overall leg weakness) the medical team decided to end the radiation plan early, stating that the effects were likely due to inflammation in the spinal cord resulting from the radiation.
After waiting for his back to heal post-surgery, Case resumed chemotherapy. Over time, the nodules in his lungs, and the two spots on his spine continued to shrink. While the tumor in his leg was still growing, it was no longer as inflamed and more dead cells were detected.
With treatment working well but with a progression of pain and weakness in Case's calf, they decided to pause chemotherapy in order to radiate the tumor in his leg. Case finished treatment on his leg after 15 total treatments and then underwent more scans on his lungs and spine.
At the end of March, Case started to experience double vision, dizziness and numbness in his left foot. Upon sharing this news with his Doctor, a brain scan was ordered to rule things out.
Instead of ruling anything out, he got a new diagnosis: Leptomeningeal Disease. This disease is caused when cancer cells invade the fluid that surrounds the brain and spinal cord. It is a rare disease that impacts less than 5% of all cancer patients and is especially rare for those with sarcoma. It has already taken a toll by causing some facial paralysis, hearing loss, partial numbness in his hands and numbness in his good leg.
Fortunately, he was assigned a new neuro-oncology team who drew up plans to start radiation immediately. The goal was to find clusters of these cells and radiate them to get them off of the nerves that caused some of his neurological issues. After additional issues with his legs, a spine scan was ordered and additional tumors were found in his lumbar which caused his walking ability to quickly regress.
Since the last diagnosis, Case had to stop working (short-term disability) and Heather switched to working part-time in order to help at home. Case's brother Sayer has also been staying at the house part-time to help, and Sayer's wife Abbie has been holding down the fort at home wrangling two kids (Case and Heather's, niece Jorie and nephew Cale).
Rylee continues to spark joy in the lives of the Jackson Family and loves the wheelchair rides she gets with Daddy each night before bed. Case finished a round of double duty radiation on his brain and spine on May 13th.
Case is due to have another round of scans on his brain and spine on June 7th.