The day was May 19.

The year was 2021.

Charlie Lilly and his wife, Kristen, were informed by doctors that they had found an inoperable tumor on his pelvis, diagnosed as Ewing’s Sarcoma, an extremely rare cancer that more commonly afflicts children, with only 30% of the cases reported to have occurred in adults.

Good news followed the diagnosis. Under what doctors called “surveillance,” periodic three to sixth month checks, it was determined that the tumor had stabilized.

“I was hoping that meant it was dead,” said Kristen, “but stabilized means not spreading or causing other tumors to appear.”

Unfavorable results

On Feb. 3 of this year, the results of Charlie’s PET scan showed a new active lesion on his right ischium which is still in the pelvic area but not in the original spot which was the right iliac bone.

“We were unpleasantly surprised because doctors had told us that if another tumor should pop up, it mostly likely would happen within a year and half of the first one, not two and half years later,” Kristen said.

On Feb. 8, the Jim Thorpe man was told by his oncologist that in about six weeks, in mid-March, a CT scan will be restaged of the chest, abdomen, and pelvis areas to determine if there are new sites of the disease which then would warrant palliative treatments, a form of chemotherapy that attempts to quiet painful symptoms so that the patient can return to some degree of a quality of life.

Not a day goes by

If the scan proves negative, then doctors will continue to monitor the Sarcoma through surveillance. In the meantime, Charlie is dealing with pain every single day.

“While I have received radiation therapy every other day for a period of time at Fox Chase Cancer Center at Temple University Hospital in Philadelphia, I continue to experience pain in my back, in my hip, tingling in my feet, and I also have pain in my stomach from which they have been unable to diagnose the problem so far,” said Charlie who celebrated his 48th birthday on Feb. 6.

Nothing normal describes his lifestyle now. The original doses of chemotherapy in 2021 caused headaches, nausea, a weight loss of 11 pounds and constant tiredness, all of which he still experiences today. Food tastes like metal and to prevent losing too much weight, Charlie drinks nutritional and weight gaining shakes.

“You would think I’d be sleeping a lot, but that’s not the case,” he said. “My mind races all through the night. What’s next? I say over and over to myself.”

Heavy burdens

Needless to say, his war on cancer has taken its toll on his family, too.

“To be honest, I’m not coping well,” Kristen said. “I have a small home business which has been a blessing, especially with our kids who are between the ages of 26 and 12, the older ones living out of the house or in college, but Charlie’s condition is all consuming. It has become our everyday routine of life.”

They try their best to keep an environment for as normal a life as they possibly can for their children.

“Every day we try to hide our emotions and keep them happy,” Kristen said.

Frequent trips to Fox Chase and necessary overnight stays at a hotel nearby, plus the purchase of pharmacy medicines continue to place a heavy burden on their expenses. The Lillys have set up “Charlie’s Cancer Fight” GoFund Me page for donations to help them through this financial crisis.

“Anything people can give including prayers and positive thoughts are more than helpful,” Kristen said.

When asked to describe his feelings after another ordeal and the appearance of a second tumor, Charlie answered, “I didn’t expect it to come back and that I’d have to go through the treatments all over again.”

That said, he vows to continue his war on cancer. “I’m a fighter and always have been. This is no different from any difficult fight. It’s something I just got to get done like anyone else would do. It’s the rest of my life we’re talking about. I just got to keep going.”

Once again, donations to the Lillys can be made online at “Charlie’s Cancer Fight” GoFundMe page.