5 year old, Devon Wooten was diagnosed with a stage2 ependymoma brain tumor on November 14, 2008. The type of cancer he has is extremely rare. Less than 10 percent of childhood brain tumors are this type, and of those cases only one in 368 cases have a positive spinal tap. The positive spinal tap is more common is adults.

Devon had surgery to remove the tumor on Saturday, November 15, only hours after his diagnosis. The doctors said there was no time to waste. The tumor had so much pressure on his brain already, that it had begun swelling. They needed to act quickly and remove what they could, even if it meant they couldn't get it all.

The surgery lasted over 6 hours, but was a complete success, with full resection of the 4 - 5 inch long tumor. Two vertebrae of his backbone had to be removed in order to remove the tumor. The following Wednesday pathology reports confirmed that the tumor was malignant. Devon remained in the PICU at Children's Hospital for the entire following week, then he spent 2 nights in a regular room before being released.

With all of the known cases of this type of tumor, the cancer has never spread to the cerebral spinal fluid, but to follow protocol, the next step was to complete a spinal tap. Unfortunatley, in Devon's case, the cancer had already spread to his spine. Therefore making Devon's diagnosis extremely rare, according to the few studies that they have.

Standard protocol for treatment with this type of tumor is radiation, because all studies to date, show that it is a drug resistant tumor. In his case the doctors suggested full crainial-spinal radiation, and after careful consideration and a LOT of prayer, the decision was made to follow the doctor's recommendation and begin this treatment, eventhough they were very honest in telling us that they really didn't know exactly how to treat him. They have NEVER actually seen a case like this at Children's.

On December 12, 2008 Devon began full brain and spinal radiation. He has endured the most aggressive doses possible for a child his age and size - and can NEVER be treated with radiation again in his lifetime. He was administered 20 treatments, 5 days a week of the full crainial-spinal treatments. The remaining 13 treatments were concentrated on the area where the tumor had been.  He was able to make it through the entire 6 weeks without needing a blood transfusion. This is a good sign, but he still has a very long road ahead of him.

On March 10, 2009 a follow up spinal tap and MRI revealed new areas of concern on his lower spine.  Children’s Hospital is proposing chemotherapy with Carboplatin; Vincristine; Cyclophosphamid and Etoposide, even though Ependymomas usually do not respond to chemotherapy. They have prepared the family for severe side effects. Doctors have stated they do not know if this chemotherapy regimen will have any effect on the cancer.  Since then Jason and Sarah have traveled to Houston, TX and met with doctors at MD Anderson and The Burzynski Clinic.  At MD Anderson they were offered basically the same regimen as Children’s.  M.D. Anderson also stated they wanted to see further imaging studies to make sure the diagnosis was correct. Pathology slides have been sent to M.D. Anderson.  Devon’s Medicaid is not effective out of state, and he must have sedation for the studies.

The Burzynski Clinic offered alternative treatment with Antineoplastons. The two components of this are sodium phenylacetylglutaminate and sodium phenylacetylisoglutaminate. This clinic is conducting a Phase III clinical trial with this preparation on Glioma and Glioblastoma .  FDA Orphan Drug status has been granted. The side effects are reported to be mild. This treatment is given constantly, by pump for an extended period of time (up to a year). The family must have a local pediatrician to manage the child’s treatment and general health. 

This is a very young rural couple with two other children.  They are very realistic about their son’s prognosis and anxious to spare him more of the side effects he has already experienced.  They are currently trying to find a local provider to perform an MRI and a PET scan under anesthesia so their Medicaid insurance will pay for an in-state service.  ACH will not accommodate them until May and will not collaborate in any way with The Burzynski Clinic.  They are also searching for a local Pediatrician to care for Devon and monitor treatment and side effects.

Please continue to pray for Devon and his family as they make these decisions, and as he continues to fight this disease.