It all started with lower back pain that lasted sleepless nights for years. It was only four weeks ago that the reason for his debilitating condition was finally discovered.
Charlie Lilly, 46, had Ewing’s sarcoma in her 4. It 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 annually.
Jim Thorpe father of five, Charlie, and his wife Kristen have put their hands and hearts together to battle the cancer that has cost them time, money and, of course, precious quality of life.
A life changing moment
“We went through several emergency rooms with his back pain and were told it was most likely sciatica or sacroiliitis,” said Kristen. “We went to an emergency center again in March of this year when he was suffering excruciatingly and they told Charlie to take ibuprofen and see his GP.”
One x-ray after another proved inconclusive, but an MRI showed that there was a serious problem.
“I was out walking when my husband called and his voice was trembling,” said Kristen. “He said the MRI report said, ‘Immediate oncological evaluation needed’.”
Then, on May 19, Charlie and Kristen waited excruciatingly for 45 minutes to see the biopsy results that confirmed Charlie had Ewing’s sarcoma with an inoperable malignant tumor in the pelvis.
Ewing’s sarcoma is treatable, but not curable. Charley immediately began radiation and chemotherapy procedures at the Fox Chase Cancer Center at Temple University Hospital in Philadelphia. The drug is administered through an inserted port for five days at a time, with a two to three week recovery period in between.
Despite the reality of the diagnosis, Charlie has the same thought every day he wakes up.
“I’m still shocked that this thing hit me,” he said. “It came out of nowhere. I wanted to doubt that it was true. It is not genetic and no one will ever be able to tell me a cause. “
His terrible back pain has subsided. His cancer treatments, he says, were “a blessing to relieve the severe pain I had for nearly three years.”
Kristen says that her husband’s cancer “engulfed every thought in her head,” from waking up to going to bed each night. Then there was the task of telling her children that their father was very sick.
“It took us a while to tell the kids, and our oldest, Charles IV, is upset that he cannot come back from Texas, where he is in the Army, to stay with his father during this difficult time be.”
The side effects of chemotherapy are hardly tolerable. After his first round of treatment, Charlie suffers from nausea, fatigue and headaches. He’s also lost his taste for food.
“When I try to eat the food has a terrible metallic taste,” he explained. His loss of appetite has resulted in his losing 16 pounds so far and now having to drink nutritional shakes.
The tumor on his pelvis isn’t the only problem. As with many sarcoma patients, the disease has spread to Charlie’s lungs.
“I have a couple of tiny spots there and we hope the treatment knocks them out.”
The will and the courage
Charlie’s fight will be long and hard.
In his words, he says, “I take it day after day. Two months already feel like a lifetime. I’m trying to stay in the moment, but it’s not easy. “
His medical team at Fox Chase didn’t tell him directly about his chances of survival, but a doctor explained it to the former construction worker through a comparison.
“He asked me what the strongest part of a house is and I said it’s the foundation,” said Charlie. “I knew immediately that it was referring to the tumor on my pelvis.”
He spends his days coping with his symptoms until he has to resume the ritual on the next round of treatment, which doctors say will last at least 14 times. He watches TV and smiles at the number of cancer commercials he sees now that he used to think were not important.
Charlie tells the truth about everything to his children, whom Kristen calls “Daddy’s girls and boys.”
“It is better that you hear from your father what I have to do because you would google it and find out anyway. When my hair falls out or they see me foaming in front of my mouth, they know what to expect. I want them to be strong so that we can get through this together. “
He bears no guilt or regret as to why this cancer entered his body.
“I didn’t do anything wrong to get this. It’s super rare, ”he says. “I just hope nobody else has to be in the position I am in, especially when it comes to a death sentence.”
The cost burden is also on the Lillys. Kristen set up a GoFundMe page to accept donations, prayers, and kind words.
“Every time I go to Philadelphia with Charlie, I stay at a hotel near his treatment center. It has become an expensive burden that is beyond our capabilities, and now we have to get a reliable car too. “
Love is an answer
As the Lilly family progresses when more questions arise about his condition, Kristen and Charlie’s love for one another will answer.
“I knew he was one in a million when I married him 12 years ago, but this rare cancer shouldn’t be part of the package,” Kristen said with a difficult laugh. “Charlie is my sunrise, my sunset and every moment in between. He’s a great father, husband, and man. “
While the 46-year-old family man was waiting for a positron emission tomography in July, he courageously and sympathetically accepted his plight.
“I am not a victim. We have to find out, ”he says. “But for now I just have to get through another day.”
Editor’s note: Donations for the Lillys can be made on the GoFundMe Charlie’s Cancer Fight page.
Charlie Lilly and his wife Kristen PHOTO CONTRIBUTED
Charlie Lilly and his son Charles IV. ENCLOSED PHOTO