It all started with low back pain that lasted for years from sleepless nights. It was only four weeks ago that the cause of his debilitating condition was finally discovered.
Charlie Lilly, 46, was diagnosed with stage 4 Ewing’s sarcoma, a rare type of cancerous tumor that grows in a person’s bones or in the soft tissue around the bones, such as in the cartilage or nerves. The condition is more common in children, but affects only 200 American boys and girls each year. This type of sarcoma is found in only 20 adults each year.
Charlie and his wife Kristen, a father of Jim Thorpe, have joined hands and hearts to fight his cancer that has cost them time, money and of course a precious quality of life.
A life changing moment
“With his back pain, we had made several visits to urgent care centers and were told it was most likely sciatica or sacroiliitis,” Kristen said. “In March of this year, we went to an emergency room again when he was suffering unbearably, and they told Charlie to take ibuprofen and see his personal care provider.”
X-ray after X-ray proved inconclusive, but an MRI showed that there was a serious problem.
“I was out for a walk when my husband called and his voice was shaking,” Kristen said. “He said the MRI report said, ‘I need immediate oncology workup’?”
On May 19, Charlie and Kristen waited in agony for 45 minutes to see the biopsy results that confirmed Charlie had Ewing’s sarcoma with an inoperable malignant tumor on his pelvis.
Ewing’s sarcoma is treatable, but not curable. Charley immediately began radiation and chemotherapy at Fox Chase Cancer Center at Temple University Hospital in Philadelphia. The drug is given through an inserted port for five days at a time with two to three weeks of recovery in between.
Despite the reality of the diagnosis, Charlie has the same thought every day when he wakes up.
“I’m still in shock that this thing hit me,” he said. “It came out of nowhere. I wanted to doubt it’s true. It’s not genetic and no one will ever be able to tell me a cause.”
His terrible back pain is gone. His cancer treatments, as he says, have been a “blessing in easing the intense pain I had for almost three years.”
Kristen says her husband’s cancer has “consuming every thought in her head” from waking up to going to bed every night. Then there was the task of telling their children that their father was very ill.
“It took us a while to tell the kids, and our eldest, Charles IV, is upset that he can’t come back from Texas, where he was stationed in the military to be with his father during this difficult time. “
The side effects of chemotherapy are hardly tolerable. After his first round of treatment, Charlie suffers from nausea, fatigue and headaches. He has also lost his taste for food.
“When I try to eat, the food has a horrible metallic taste,” he explained. Due to his lack of appetite, he has lost 16 pounds so far and now has to drink nutritional shakes.
The tumor on his pelvis is not the only concern. As it occurs in many sarcoma patients, the disease has also spread to Charlie’s lungs.
“I have a few small spots there and we hope the treatment eliminates them.”
The will and the courage
Charlie’s fight will be long and hard.
In his words, he says, “I look at it day by day. Two months already feels like a lifetime. I try to stay in the moment, but it’s not easy.”
His team of doctors at Fox Chase didn’t tell him directly about his chances of surviving the cancer, but a doctor explained it to the former construction worker by making a comparison.
“He asked me what the strongest part of a house is, and I said it’s the foundation,” Charlie said. “I knew at that moment that he was talking about the tumor on my pelvis.”
He spends his days dealing with his symptoms until the next round of treatment, when he has to take over the ritual again, which doctors say will take at least 14 times. He watches TV and grins at the amount of cancer commercials he sees now that he didn’t care about before.
Charlie tells his kids, whom Kristen calls “daddy’s girls and boys,” the truth about everything.
“It’s better they hear from their dad what I’m dealing with because they’d google it and find out anyway. If my hair starts to fall out or they see me foaming at the mouth, they know what to expect. I want them to be strong so we can get through this together.”
He has no guilt or regret about why this cancer has invaded his body.
“I didn’t do anything wrong to get this. It’s super rare,” he says. “I just hope no one else has to be in the position I’m in, especially if it ends up being a death sentence.”
The burden of cost also weighs on the Lillys. Kristen has set up a GoFundMe page to accept donations, prayers and kind words.
“Every time I go to Philadelphia with Charlie, I stay in a hotel near his treatment center. This has become an expensive burden beyond our means and now we also need a reliable car.”
Love is an answer
How the Lilly family moves on as more questions arise about his condition is answered by the love Kristen and Charlie have for each other.
“I knew he was one in a million when I married him 12 years ago, but this rare cancer was not part of the package,” Kristen said with a difficult laugh. “Charlie is my sunrise, my sunset and every moment in between. He is a wonderful father, husband and husband.”
While this 46-year-old family man awaits a positron emission tomography scan in July, he has accepted his plight with courage and understanding.
“I am not a victim. We have to figure this out,” he says. “But for now I just have to push myself through it one more day.”
Editor’s Note: Donations to help the Lilly’s can be made on Charlie’s Cancer Fight’s GoFundMe page.
Charlie Lilly and his wife Kristen CONTRIBUTED PHOTO
Charlie Lilly and his son Charles IV. CONTRIBUTED PHOTO