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  Josh A.  
 

Before Josh was old enough to talk in complete sentences, he would wake up in the morning and say to his mother, “Head hurt.”  Then, he would fall on the couch in misery. Vomiting seemed to make him feel better but every few days he would wake up in pain again — even after being treated for sinus trouble by the family doctor. On Christmas Eve morning 2002, Josh was so sick that his parents took him to the emergency room at at a local children's hospital. A CAT scan revealed a tumor growing in the left frontal lobe of Josh’s brain. 

Doctors at successfully removed Josh’s tumor but it was “high grade,” which meant that the surgery alone would not be sufficient to cure him. Without further treatment, the cancer was certain to recur and he would only have a 30 percent chance for a cure. 

Josh’s best hope was to enroll in a clinical trial, and his oncologists referred the Abbotts to Dr. Joe Neglia, Chief of the Pediatric Hematology-Oncology program at the University of Minnesota Children’s Hospital, Fairview. Dr. Neglia was testing an experimental treatment for very young children like Josh with high-grade brain tumors.

The treatment involved a combination of powerful chemotherapy drugs. One of the drugs was very effective in killing tumor cells but also extremely toxic to the bone marrow and immune system. Josh needed three cycles of this drug to ensure he received an effective dose. To counteract the drug’s toxic effects, the treatment also included a process called stem cell rescue: Dr. Neglia extracted stem cells from Josh’s blood, froze them, and then infused them back into Josh’s blood stream after each cycle of the marrow-killing drug. In this way, Josh’s own stem cells were used to restore his immune system.

The treatment was harsh but it increased Josh’s chance of surviving.  “This was our ray of hope,” says Lisa.  “It was hard to allow Josh to go through the chemo, but the stem cell treatments helped him recover. We felt it was the best treatment possible, given his situation.”

By supporting the University of Minnesota Cancer Center’s Stem Cell Biology and Phase I Therapeutics Programs, Children’s Cancer Research Fund is enabling the University to continue its pioneering efforts in stem cell transplantation as well as in developing and testing new treatment strategies for children with cancer refractory to conventional therapy, or who are at high risk for treatment failure. This support allows researchers to expand their studies to further develop novel approaches for treating pediatric cancer patients like Josh.

Josh’s treatment lasted for six months. He lost his hair and eyebrows. He also lost a lot of weight, especially during the first round of chemotherapy, when anti-nausea drugs were ineffective. In deciding to allow Josh to receive an experimental treatment, the Abbotts took a big chance, and they had difficulty watching their son suffer painful treatment side effects. They prayed they had made the right decision. 

Four years later, they’re thrilled that their son is free of cancer, and they are especially glad he was treated at the University of Minnesota Children’s Hospital, Fairview.  “Every single nurse on 5B [the children’s oncology unit] was an angel,” Lisa says.  “And Dr. Neglia and Jane Torkelson [Coordinator of the University’s Brain Tumor Program] were just so awesome.”

“Dr. Neglia cares about your child so much,” she continues. “He has a really hard job but you feel confident because you can see how much he cares.”

Josh finished his treatment in June of 2003. His parents take him to the University’s Oncology Clinic annually for a check-up and will continue to do so for several years.  So far, there is no sign of any cancer returning. Cutting-edge research and treatments, like those performed by Dr. Neglia and supported by Children’s Cancer Research Fund, are the best chance of a cure for children with brain tumors. Thanks to research and the dedication of the University of Minnesota’s health care team, Josh is in good health — an outgoing second-grader who “makes friends like crazy,” loves baseball and computers, and is the apple of his mom's eye.

Listen to Josh's Story Here


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