Local child recovering from rare brain cancer

| 08 Feb 2012 | 02:39

STANHOPE — Joe and Michele Johnson never suspected that when their two-year-old son Joey began occasionally vomiting during car trips it was a sign of something very serious. Instead, they were told it might be motion-sickness. The couple noted sporadic vomiting episodes in August 2011, shortly after the birth of their younger child, Madelyn, in July. “In September and October it became more acute, going from every week to every day,” said Michele. Soon after Joe and Michele watched their usually active toddler become increasingly tired and spend more time on the couch. They took Joey on an odyssey of doctor visits for a battery of different tests. They even braved the Oct. 29 Nor’easter to take a trip to Hackettstown Regional Medical Center for tests. Joe and Michele also took Joey to specialists at Saint Clare’s Hospital in Denville and to the Morristown Medical Center. Uncertain of what Joey was struggling with, doctors directed the family on different paths - from testing for allergies to upper gastrointestinal issues. A doctor at Morristown Medical Center told them they had not yet checked his head. Joe and Michele brought Joey to Saint Barnabas Medical Center in Livingston for an MRI the day before Thanksgiving 2011. “The night before Joey was running around playing," said Joe. "And I said, ‘He’ll be fine tomorrow.’” Joe and Michele did not suspect the news they would receive the next day would change their lives. “We received a call from our pediatrician’s office and were told the results were back, and there was silence on the other end of the line,” Michele recalled. The Johnsons rushed to the pediatrician’s office and found their doctor crying. The pediatrician had made a call to the Children’s Hospital of Philadelphia and before they knew it, the Johnsons were on thier way there. At the hospital the test was repeated. Joey was wheeled into surgery the day after Thanksgiving for the neurosurgeon at the hospital to remove a 5-centimeter tumor in his head. Following the operation the doctors would study the tumor. Joey was diagnosed with stage four glioblastoma, an aggressive and malignant brain tumor. The tumor is most common in males over the age of 50. Doctors at the hospital told Joe and Michele that out of the nearly 100 brain tumor cases they see at their facility annually, 5 to 10 cases are cancerous, and only one of those cases is of the glioblastoma type. The neurosurgeon removed 98 percent of the tumor and the surgery has left Joey with no permanent damage. He is able to walk and talk as easily as he did prior to the operation. Joey is currently on an intensive, five-month chemotherapy regimen. Three of the drugs are given through an IV, and one of the drugs is administered orally. A portion of the chemotherapy can be administered at home, another involves outpatient care, and the other requires a three-day hospital stay every month. The Johnsons have continued Joey’s treatments and care at the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders at the NYU Cancer Institute. He is also on anti-seizure medications and steroids. When Joey's doctors attempted to wean him off the steroids the vomiting returned. When the five months of chemotherapy is over, Joey will receive his own stem cells back to help rebuild his immune system. A fund has been created to defray medical costs for the family. Joe, who is a patrolman with the Stanhope Police Department, has been using vacation and sick time to help care for his son. For Michele, who has Multiple Sclerosis, having Joe nearby has been a tremendous help. “Joe does a lot, he helps me to take Joey to his different doctor appointments,” Michele said. Her mother has also been able to take time off from her job to help the family. Joe and Michele said they are grateful to everyone who has donated to their medical fund. Police departments from Andover, Byram, Hamburg, Hardyston, Netcong, and Randolph have also donated. To donate to the fund, which was established through the Stanhope American Legion, make checks payable to Musconetcong Post #278. In the memo section write “Fund 4 Joey.” Mail checks to the Stanhope Police Department, ATTN: Det. Bork or Sgt. Hickman, 77 Main St., Stanhope, NJ, 07874. In addition, the McDonald's in Byram will be donating 15 percent of its sales to the fund from 4-8 p.m. on Feb. 20. Our Savior Nursery School in Stanhope will be matching the donation from McDonald's. Joe and Michele are considering establishing a foundation to assist others with this type of cancer. “We’d like to move past this nightmare, give back, and help another family,” Michele said.