Material things are gone, family remains together through boy's cancer diagnosis
Wednesday, July 11, 2012 6:21 AM EDT
By ROB TAYLOR
OSWEGO NY” Julian Thomas Ross is a typical 7-year-old who likes video games, camping and dreams of growing up and serving his country as a military police officer and a volunteer fireman. However, life is anything but typical for this shy little boy, who is already in the fight of his life against an extremely rare form of cancer.
Julian suffers from neuroblastoma, a rare form of cancer that afflicts only 650 children in the United States annually and 1,095 kids worldwide. According to the National Library of Medicine â€” a service of the National Institutes of Health â€” neuroblastoma is a malignant tumor that develops from nerve tissue and most commonly occurs in children younger than 5. The disease attacks the sympathetic nervous system, which controls body functions such as breathing and digestion, while causing fever, general sick feeling and loss of appetite among other symptoms.
Steve Ross, Julian’s father, said his son started to experience these symptoms just a few days before he was diagnosed Aug. 4, 2011, at the Golisano Children’s Hospital in Syracuse. He said Julian was given a 3 to 6 percent chance of survival. Julian’s fevers, cramps and loss of appetite were initially misdiagnosed as everything from food poisoning to a burst appendix. Mr. Ross said when the correct diagnosis was made, he and his wife, Kristi, were given the choices of letting nature take its course or treating their son with no guarantee of positive results.
That fight led the Ross family to the Children’s Hospital of Philadelphia (CHOP) and to Dr. Yael P. MossĂ©, a neuroblastoma researcher, after Julian became resistant to chemotherapy. Mr. Ross said the experimental treatment includes radioactive iodine injections that make the patient radioactive for about two weeks. He added that Julian must be isolated in a lead-lined room immediately following the treatments, and his family must limit their exposure to him during the two-week period.
We had to fight for him, Mr. Ross said. He would just curl up in a ball on the floor and cry.
He is ready for a stem cell transplant and no one ever thought he would make it to this point, Mr. Ross said, who added Julian is doing better under these treatments and his chance of beating the disease has risen to about 25 percent.
The fight has not been without costs to the Ross family. Mr. Ross lost his job soon after Julian began receiving treatment at CHOP, forcing the family to pay Consolidated Omnibus Budget Reconciliation Act (COBRA) insurance payments that only cover a portion of the $450,000 cost of Julian’s treatments.
Mrs. Ross said almost everything the family owns is for sale, including their home, furniture and even their wedding rings.
The problem is the COBRA payments, Mrs. Ross said. My husband lost his job and benefits, and we have to pay COBRA an obscene amount.
Members of the city of Oswego Fire Department have stepped up to help the Ross family and have organized a benefit chicken barbecue Aug. 4, the one-year anniversary of Julianâ€s cancer diagnosis. The benefit will be held at the Port City Faith Assembly of God Church, located at 436 W. Fifth St., in Oswego, with 100 percent of the proceeds going toward Julian’s treatment.
Lt. Brooks Hourigan, an Oswego city firefighter, has been helping organize the event and donations for Julian’s medical bills. Hourigan said the event will also offer a raffle for an iPod Touch, a 50/50 drawing and ‘Julianâ€s Joust’ bracelets will be sold.
‘We have adopted him as one of our own,’ Hourigan said, whose own son rode with Julian on a fire truck in Oswego’s Independence Day parade.’
Mr. Ross said his family was grateful for the kindness and generosity shown to them by the Oswego firefighters â€śbeyond what words can express.’
Julian, given the opportunity to pass a message along to his new friends in the fire department, simply said, ’Thank you.’
Julian has his own website tracking his story at www.juliansjoust.com.
Anyone interested in helping with donations for the auction at the benefit can contact Hourigan at 342-5570.