Dealing with boy's cancer changes family's outlook
The 5-year-old is responding well to treatment.
By GAIL WHITE
VINDICATOR STAFF WRITER
MINERAL RIDGE -- "See those windows," said Stephanie Caruso of Mineral Ridge as she pointed to the windows on the French doors leading to the back yard of her family's home.
"I used to get so mad at all the fingerprints on the glass," she said. "Now, I thank God that I have to clean them. I wipe them off and pray, 'Thank you for these fingerprints.'"
Stephanie's change of heart came on Valentine's Day this year when her 4-year-old son, Josef, woke up with a swollen right eye.
"We thought he had gotten pink eye at preschool," Stephanie said.
For two weeks, they treated the eye with medication for pink eye, but the swelling only got worse. Stephanie made an appointment with the doctor for March 3 to have the eye examined.
Josef never made it to that appointment because on Feb. 28, he woke up with a high fever, complained that his eye was hurting and was unable to walk.
Stephanie and her husband, Tony, rushed their son to the hospital. It would be March 22 before the family would hear the diagnosis that Josef had rhabdomyosarcoma, a fast-growing, highly malignant tumor.
"March 31 was like D-Day for us," Stephanie said. They were scheduled to meet with the doctors and learn if Josef's cancer had spread. "It was like going into the principal's office," she said.
While still reeling from the devastating news that their son had a tumor, Stephanie and Tony were ecstatic to learn that the cancer cells had not spread. They were told Josef would undergo six months of chemotherapy with radiation treatments afterward.
The first week of chemotherapy was rough on the 4-year-old.
"They started his chemo in the afternoon and he was pretty much out cold for the next two and a half days," Tony said in describing Josef's condition on a Web site he created to keep friends and well wishers posted.
"He was either sleeping or getting sick and his mood was somber, never cracking his usual smile or notorious giggle," Tony said.
After his first treatment, Josef bounced back quickly. During his second week of treatment he returned to preschool.
Josef celebrated his fifth birthday during his third week of treatment. While a new four-wheeler was his favorite gift, the most special present came when Josef shaved his father's head.
"Daddy and Josef got brand new cool haircuts!" Tony writes on the Web site. "Who knew Josef was such a great barber!"
Now nearly 10 weeks into his treatment, Josef is responding well to the chemotherapy, and the Carusos are trying to regain a sense of normalcy to their lives.
"Normal is this," Tony said, watching Josef and his older sister, Haley, play in the living room. "Only 100 times better."
"Our house is never quiet," he said. "Now, I come home and no one's here because they're at the hospital or it's quiet because Josef's resting. It just doesn't feel right."
"It changes you," Stephanie said in explaining how her son's diagnosis has affected her. "Before he got sick, we were talking about putting in a pool or building an addition. Now we are keeping our son alive."
Josef's chemotherapy costs $11,000 a week. The Carusos are responsible for $4,300.
"Just driving to the hospital gets expensive, and then you have to pay to park," Stephanie said.
Watching Josef smear his hands on the French door windows as he heads outside to play, Stephanie is again reminded of how her son's illness has changed her.
"I love to shop -- shop for anything, new purses, new shoes," she said. "That doesn't matter to me now. I love to watch him play."
The family has already planned its next vacation. "When Josef is cancer-free for a year, we're going to go to Disney World and the beach and Josef is going to throw his medi-port in the ocean," Stephanie said with excitement.
A medi-port is the device used to administer the chemotherapy. A needle is inserted into Josef's chest and a tube extends from it to inject the treatment. Of all the procedures he must endure, Josef dislikes the medi-port most.
"I don't like needles," he said in his sweet, innocent, 5-year-old voice. "It hurts."
"I am sad for his journey," Stephanie said. "We have faith to see us through." She pauses and smiles, "I am just so fortunate to have my children in my life."
XFor updates on Josef's progress go to www.caruweb.com. To help defray Josef's medical expenses, a Josef Caruso Benefit Fund has been established at Farmer's National Bank.