My wifes' pregnancy was a healthy and normal pregnancy. She took prenatal vitamins, ate right and just took really good care of herself and the baby inside. All of the ultrasounds looked like we had a healthy baby boy on the way.October 5, 2011 is when Gavin came into this world via natural vaginal birth. Instantly our best day turned into our worst day. Gavin had an egg sized tumor on his stomach and another on his back. His skin was discolored from his upper back to his knees. This is known as bathing trunk nevus. We were transported from SRMC to Women’s and Children’s Hospital five hours after birth. We were only there for 5 days because this disease is so rare no one knew how to treat. On October 11 we were sent to UPMC Children’s Hospital where he stayed in the NICU for 9 days. The doctors there had seen disease before and called it "neurocutaneous melanosis" with accompanied giant hairy nevus. We were educated on the disease and we came home on Oct. 20. A week later we went back to Pittsburgh to have the egg sized tumors removed and the tissue is now being grown and tested in Dr. Miguel Reyes-Mugicas' lab.A few weeks went by and we noticed Gavins' eyes bulging out so we loaded up and went back to UPMC Children’s in Pittsburgh. We met Dr. Regina Jackaki who is a neuro oncologist and she took one look and said he was hydrocephalic and without immediate surgery he would not make it. So an MRI was done and a cyst was found that was causing the problem. On Nov. 10 surgeons attempted to remove the cyst but could not. Instead we opted for a VP shunt. This allows pressure from the brain to be drained into the abdomen. Somewhere between the first two brain surgeries Gavin developed a massive brain infection so the VP shunt was removed from the left side of his brain and an external drain was surgically put into Gavins’ brain to drain infection and blood. After 10 days of antibiotics another VP shunt was placed on the right side of his brain where it remains today. We got to bring him home on December 1 from the hospital. Our next MRI was in April 2012. The results were not good and Dr. Regina Jackaki told us that Gavin is terminal, although she won’t put a time on it she says "it will not be as long as you want." So we ask about treatments and started radiation pills for a month. We went back for a follow up MRI in May 2012 and the disease had gotten worse again. By this time Gavin weighed 13 pounds and was not gaining weight because he quit eating.To sustain life we opted for a feeding tube. On May 12 he was given a tube that goes into his stomach so he would live. That visit we were there 2 weeks. We then started an experimental chemo therapy called Temodar that he takes 5 days in a row at the beginning of each month. He also gets an injection called Peg interferon alfa-2b every Tuesday.When we brought him home again he threw up constantly so every week we drove to Pittsburgh Children’s Hospital and would get tests and procedures. We would stay from 1 to seven days with each visit and this was weekly until around August. The day before my DRO VA hearing we again had to make an emergency trip to the children's hospital because Gavin was throwing up blood. The doctors now have the vomiting under control but he still spits up. It’s now Nov.2012 and he weighs 17.8 pounds. He doesn't crawl but scoots on his bottom to get around. He can stand up by himself and walk with a helping hand. The first Saturday of 2013 Gavin lost the use of his legs, bladder and partial bowel function. By the time we got him to UPMC Pittsburg he was paralyzed from the waist down. He received a large dose, 4 grey or 400 rad, concentrated to the tumor on his spinal cord. Within 10-14 days he regained feeling down to his waist but still very little bladder function, so we had to cath him every 6 hours. In January Gavin was given six months to live in but passed away on March 23, 2013 at 8:15 p.m. surrounded by family in UPMC Childrens Hospital Pittsburgh Pennsylvania. He had two tumors that rapidly grew, one in the C-spine area and one at the brain stem. This caused the brain stem to shut down and after 4 agonizing hours he stopped breathing and lost his battle with NCM. We donated his brain and spine along with the rest of his organs to Dr. Miguel Reyes-Mugica, chief of pathology and researcher of NCM. Miguel recently gave me a preliminary report and told me that they have already learned a lot of new things about the disease in just 14 days. I will not stop raising money and having events until a treatment or cure is found for this disease.
By Travis Bailey (Gavins Dad) Published 2013
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