Sarcoma Story: Thomas Worthley

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Type of Sarcoma: Synovial Sarcoma
Date of Diagnosis: 2014
Location: lung

The weekend of March 8th, 2014 was like any other normal weekend – Tom and his wife Terrie traveled to their daughter Meghan’s home in Wisconsin for a visit. They spent the weekend enjoying their two granddaughters and spending time with Meghan and her husband Ben. Tom spent the weekend at the High School State Championship Wrestling matches. He noticed that when he walked up the stairs to find a seat at the match, he became quite winded, which was surprising since he was in excellent shape. Assuming he had caught the cold that the girls had, Terrie and Megan both encouraged him to visit the doctor.

When Tom returned home, he followed through with seeing the doctor. During the visit, a massive shadow appeared over most of his right lung; his doctor shared that it was most likely cancer. Tom’s breathing was very difficult, so they drained five liters of fluid which made breathing much easier, and performed a biopsy to get a clearer picture of what we were dealing with. About a week later, Tom received the news that he had Synovial Sarcoma originating in the lung. The following week, Tom, Terrie, and Meghan traveled to the Mayo Clinic in Rochester, MN to learn about treatment options.

While devastated by the diagnosis, we remained strong and became known as “The Tumornators, #teamtom”, with Tom being “The Tumornator”. Initially, Tom responded very well to chemo. He felt great, with minimal side effects (besides the loss of his beloved hair), continued to work, and received news that the mass was shrinking. We remained optimistic. Summer allowed him to travel with Terrie to Door County Wisconsin for their 34th Anniversary. However, in October 2014, Tom started to have trouble breathing again and fell ill. He was really struggling towards the end of the year. It was decided Tom would have debulking surgery in February of 2015 to help drain some of the fluid and try and remove some of the mass.

Tom and his family were thrilled with the results of the surgery – over 95% of the fluid and mass was removed. Things began to look up and we enjoyed time as a family. The family was overjoyed when Meghan and daughter-in-law, Katelyn, both announced they were pregnant and due in July. Tom was thrilled with the prospect of another granddaughter and his first grandson joining the family.

However, in April 2015, Tom received news that the mass had returned and was growing. He had to choose between several different experimental drugs. He chose Yolandis and traveled to Iowa to receive treatment. He felt terrible from the drug and wasn’t sure if it was really working. He spent Father’s Day with his son Brandon and Katelyn and Terrie. They all encouraged him to go into the doctor that Sunday, however Tom refused. It was a beautiful day and he just wanted to enjoy sitting outside on his deck, one of his favorite things to do. Tom’s family believes that he knew the end was near and wanted to enjoy one more day at home.

Tom was right, on Tuesday Brandon and Terrie took him to the ER where it was decided that he needed to be admitted to the hospital and was transferred by ambulance to St. Mary’s in Rochester, MN where each day a new challenge arose and Tom felt as though he was fighting for his life. Terrie remained by his side every day and night. On Friday, June 26th he was taken to the ICU. Family was notified and traveled to spend time with him. That evening, Katelyn went into labor, so she and Brandon went to the hospital in the Twin Cities to await the arrival of their daughter. Meghan wanted to give her mom a break, so although nine months pregnant, she spent the night in the ICU with her dad. The doctors shared with Meghan that Tom was very ill from the side effects of the drug he was on and he was experiencing multi-system organ failure, and to top it off, the mass has grown substantially and was taking up most of his chest cavity. Meghan shared the news with Terrie when she came in.

They gathered family and friends to spend time with Tom before he passed away. Brandon and Katelyn welcomed daughter, Wrenna Rose that evening. The next morning, Meghan’s husband, Ben traveled with the girls to Minnesota to say goodbye, and despite having a brand new baby, Brandon traveled to Rochester to say goodbye and show pictures and videos of his baby girl to his dad. On June 28, Tom passed away as his family said The Lord’s Prayer. He passed while having his hand on Meghan’s stomach feeling his grandson kicking away. Kirby Thomas entered this world just three weeks shy of meeting his grandfather.

He will forever be “The Tumornator” and the light of our lives. He will live on in his two children and four grandchildren. He taught us to live life to the fullest and never give up. Tom’s family continues to honor his memory by making Tumornator candles out of wine and beer bottles and selling them with all proceeds being donated to the Rein in Sarcoma Thomas Worthley Named Fund.

You can follow Meghan’s facebook page: which details the before, during, and after of living with the loss of a family member to cancer. The family’s hope is to support other families who are touched by cancer.

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