Terry's Journey - By Faith
We are reaching out with heavy hearts as Terry faces Metastatic Renal Cell Carcinoma, an aggressive form of kidney cancer that has already spread beyond the kidney. There is no cure for kidney cancer, but it can be treated. Kidney cancer does not stay in the kidney - it travels up to the spine, lungs, and brain.
Terry was diagnosed in June 2025 when a large thoracic tumor was found destroying parts of his spine. Surgery was immediately done to rebuild part of his spine and debulk the tumor (about the size of a lemon). The surgeon fused C5-7 and rebuilt around T1, T2, and T3.
Scans following the surgery revealed the surgeon was not able to remove much of the tumor due to it being a "bloody tumor" and Terry being at risk of bleeding out.
Around 6 weeks after surgery, Terry's wound was pretty much healed, but randomly split open at church one night. We had to go back to UVA for them to clean it out and close it back up. Infection had set in from the hardware, so he was placed on antibiotics until Infectious Disease decides it is safe for him to come off of them.
Since diagnosis and surgery, Terry has been receiving immunotherapy every 2 weeks and a "high powered" radiation was done on the thoracic tumor.
Tumors were found in his shoulder and around his hip/femur, so radiation was performed on those areas, too.
Terry has missed a couple doses of immunotherapy due to his liver enzymes being elevated, so it has not been super consistent treatment.
He was also given a pill form of medication and hasn't been able to consistently take it due to side effects. His oncologist lowered the dose and we are now waiting for the specialty pharmacy and insurance.
After recent scans, we found out there has been progression with the cancer, but thankfully his kidney tumor did shrink. Unfortunately, his thoracic tumor progressed and spinal cord is still severely compressed/"narrowed" - 50% in one spot and 70% in another. A nodule was also found on his lung. Chest lymph nodes and lymph nodes near major blood vessels in the abdomen are enlarged even more - one growing from 10mm to 24mm. (Full update was posted from 1/16/26.)
Doctors have not discussed the scans with us, yet, so we don't know the next steps. They may do another round of radiation, another surgery, or add on to his immunotherapy. All we know right now is what we can read on his MyChart.
"Metastatic Renal Cell Carcinoma (RCC), also known as stage 4 kidney cancer, is when kidney cancer has spread to other parts of the body. It is the most advanced stage of kidney cancer, and it is not typically curable, but treatments can help control the cancer and relieve symptoms."
Terry is a husband, a father of five (one of whom we lost as an infant and carry in our hearts every day, one married, and three at home), and a faithful man of God who has always worked hard to provide for his family or lend a helping hand to friends in need.
Due to the seriousness of this illness and the treatments required, Terry will no longer be able to work. This sudden loss of income has placed a tremendous financial burden on our family.
We are humbly asking for your help - through prayer, encouragement, and if you're able, financial support. Donations will go directly toward:
- Everyday living expenses (rent, food, utilities, phone bills, etc.)
- Medical bills, treatments, and medications
- Travel costs for appointments and care as his thoracic spine surgery for the tumor took place at UVA and we are uncertain where else we may have to travel. Car rentals will be necessary as we do not have a reliable vehicle to drive very far.
- Support for our children during this difficult time and any needs they may have. We want life to remain as normal as possible for them and our girls have youth trips with church coming up.
We know God is with us and believe that He will provide - and sometimes, He does that through the kindness of others. If you are able to give, please know that no amount is too small; and, if you can't give financially, we ask that you please pray for Terry's strength, peace, and healing. We know from experience that prayer is powerful and changes everything.
Thank you for walking with us through this valley. Your love and support mean more than words can express.
God is in control.
He is our hope and our stronghold. We know that even if it doesn't make sense in our mind at times, God ultimately has good plans for Terry and our family. The path may be filled with curves that we weren't expecting, but regardless of what the future holds - He holds us.
It is well.
With gratitude and hope,
The Johnson Family
Organizer
