RHABDOMYOSARCOMA Dealing with boy's cancer a group effort

The 5-year-old's family has received emotional and financial support.
MINERAL RIDGE -- A large stack of medical bills sits in Anthony and Stephanie Caruso's home on Niles-Carver Road.
They come at the rate of about $4,000 a day for their son, Josef, 5, who was diagnosed with orbital rhabdomyosarcoma, or "Rhabdo" for short, earlier this year. The disease is a fast-growing cancer that attacks muscle or tissue, and affects children 15 years old and younger.
The family has health insurance, but some medications and therapies are covered at only 70 percent to 80 percent, and some medicines and professional services are not covered.
The bills have averaged about $30,000 a week since March 24.
Josef fell ill on Valentine's Day with what his mother, a licensed practical nurse, first thought was pink eye.
She took Josef to their family doctor, and he set up a CAT scan at Tod Children's Hospital in Youngstown.
Dr. Thomas Joly, director of the Ocular Department at St. Vincent Charity Hospital, Cleveland, happened to be at Tod's to perform another surgery when Josef was at the hospital for the CAT scan.
He asked to examine the boy, and his parents said "of course." Dr. Joly advised that surgery was needed. He performed the surgery March 22 at Rainbow Babies and Children's Hospital, in Cleveland, to remove a mass from Josef's left eye that filled his eyelid and made his lower lid droop to his cheekbone.
While it seemed like good news that no second surgery would be needed to pull up the puffy section of eyelid, three days later the pathology report showed the tissue removed during surgery was not benign.
Four days later doctors told Josef's parents that he had Rhadbo, a fast-growing cancer.
Josef was handed over to the chief oncologist at Ireland Cancer Center in Cleveland. Dr. Sarah Alexander ordered Josef's treatment to include six months of intense chemotherapy and five weeks of daily radiation therapy.
Throughout most of his treatment, he has struggled off and on with high temperatures and upper respiratory infections, secondary to his asthma and the effects of the illness and its treatment on his body.
One of three drugs he receives in chemotherapy, Vincristine, has a side effect of causing people to not be able to walk or walk with a limp. However, Josef isn't doing that at all, Stephanie said.
She said Josef has no reflexes but can walk on his feet like a duck. The family was warned about numerous side effects and difficulties of treatments, but: "Everything they said he would do he has not done yet," Stephanie said.
Josef's family was all invited to a party July 31 to celebrate the end of his radiation therapy July 29.
Stephanie said family members were asked to bring a letter for Josef's scrapbook to tell their own story of how his cancer has affected their life in a positive way.
Josef no longer has to wear the mask that was specially molded to his face for protection during radiation.
His mother refused sedation for the child, fearing that daily dosages would completely change him. He was able to stay still on his own for the treatments.
After every treatment, before beginning the one hour and 45 minute drive back home with his mother, Josef received a toy from the hospital -- five toys a week for five weeks. The Carusos brought a batch of toys to the hospital for other children and left a check to buy a second batch when those were gone to show their gratitude and to help others who were struggling with critical illnesses.
Stephanie said Josef will continue his chemotherapy until Aug. 26. His hair, once thick and brown, is now just a light peach fuzz.
The family will wait two weeks for another MRI to be done when the chemo is finished.
"It's not the financial burden that is going to keep me up at night; it's when we do the MRI," Stephanie said. "That's the scariest part -- the uncertainty, not the money."
If anything shows up on the MRI, there will be more surgery.
"Josef is my hero because he still takes life as any 5-year-old would, with the zest and exploration it demands," she said.
She added, "I'm trying to make cancer a piece of my life and not all of my life. Don't let it be your life; that's what it wants to be. It's just a piece of him. It is not Josef completely."
Stephanie has signed her son up for swimming lessons at the YMCA and to play soccer again this year after his therapy is over and the MRI is done.
After taking months off work, Stephanie will return to her job for two days a week soon. She said her priorities have changed.
Her daughter, Haley, 10, was recently diagnosed with a brain tumor. It is believed to be benign, but Haley must undergo surgery Aug. 19 to remove the tumor at the Rainbow Babies and Children's Hospital in Cleveland.
Stephanie said the family takes it day by day and has cut back on everything it used to do.
Any extras are things that the parents do for Josef. His mother holds a positive outlook for his outcome and finds that Josef is also very positive about his life.
His father, who is a multimedia designer with Graphic Intelligence Agency and GretagMacbeth in Akron, designed a Web site -- www.caruweb.com -- to update family and friends on Josef's progress.
Goodwill wishes, fund-raisers and private donations flow like a river into the Carusos' life now.
Funds have been established for their son -- the Josef Caruso Benefit Fund -- at Farmers National Bank and Sky Bank.
Mineral Ridge Firemen's Association will sponsor a spaghetti dinner and Chinese auction to benefit the Josef Caruso Benefit Fund from 11 a.m. to 5 p.m. Sunday at the hall behind the Mineral Ridge Fire Station on state Route 46.
The cost of the dinner is $5 for adults and $3 for children ages 3 to 10. Children 2 and younger eat for free.
Don Phillips, a Mineral Ridge volunteer firefighter, said the fire department knew Josef's mother before her son became ill, because she used to bring cookies to the fire station.
A Chinese auction will take place during the dinner.
So far, 25 to 30 corporate sponsors from Mahoning and Trumbull counties have pledged $200 to the fund-raiser, Phillips said. Others are donating whatever dollar amount they wish or are donating items for the Chinese auction.
In addition, a Youngstown police officer is planning a benefit for Josef. A Warren dermatologist and his wife will have a bake sale for him later in August. A former priest who has since married and lives in the neighborhood sends the family every check he receives for providing ministerial services to an area church that lost its pastor.
The response from friends, family and perfect strangers has led the Carusos to quote Dr. Albert Schweitzer, a famous philosopher and humanitarian, in a "Special Thank You" section of their Web site.
"At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us," Schweitzer said.
The family encourages Web site readers to turn to God, who the family believes is trying to accomplish something through them, and says also, "Without you there would be no us."

Don't Miss a Story

Sign up for our newsletter to receive daily news directly in your inbox.