DeCota touched everyone’s heart from day one. In his shot life here on earth he taught us many things, especially the meaning of true, unconditional love. He had a beautiful spirit that emanated from him. He loved to make people laugh and had an incredible sense of humor. He had the brightest smile that would light up the room. He was also a very caring child; sometimes you even had to wonder who was the grown up, you or him. DeCota had an abundant love for everyone he knew and the sweetest heart of anyone I’ve ever met. He was truly a precious gift from god.
Through his illness he was a trooper. No one ever believed he was sick, because he looked so healthy and happy most of the time. It’s hard to imagine how much he truly suffered, which is ironic, because even though he had a lot of pain, chemo, and health problems, he never complained. He never knew what it felt like to be healthy and pain free, because he was sick from the beginning, but he still kept smiling.
DeCota was born with lesions all over his body, but the doctors called it normal and didn’t run any tests. Normal was a word we would hear a lot and get tired of hearing. He would always get pneumonia and colds and every formula we tried failed. On his 4 month check up we noticed a huge knot behind his ear. We showed it to his doctor and she sent him to the hospital, that’s when all the hoping and praying began. He had a lot of test run, but they all came back negative, but when he was 8 months old we finally got a diagnosis. It was Langerhans Cell Histiocytosis. The doctors told us about it briefly and said that most kids won’t make it past age 2, but if they did they had a good chance of survival.
DeCota had many hospitalizations in his young life and even had one certain room that he stayed in. He had weekly chemo treatments that he hated to go to, but he got used to it. He made a friend in the clinic and liked one particular nurse. September 2003 he wouldn’t eat for days and screamed when trying to have a bowel movement. We brought him to the hospital and were told he had a fistula, but no matter what they did it wouldn’t heal, so he got a colostomy. We celebrated his 2nd birthday in the hospital. He was doing better after that and we thought we had this disease beat, but we were shown differently.
The change happened around Easter, DeCota wasn’t his normal self; he was depressed, cranky, and wouldn’t talk much. We brought him to the ER twice and was sent back home saying everything was fine. They finally admitted him 3 weeks later on may 20th for pneumonia. The doctors treated it with many antibiotics, but it wasn’t responding to anything. They finally figured that maybe his illness had flared back up and wanted to run some tests on him. May 22nd they gave him an Open Lung Biopsy. When he came out of it he seemed like his normal self again and we were all happy thinking the problem was solved. Sometime during the night he had stopped breathing and they couldn’t get him to breathe on his own again so they put him on a respirator, but that wasn’t working either. They hooked him up to a machine Sunday and we just watched, waited, and prayed. The doctors decided to try him on 2 rounds of strong chemo to see if it would work. He got his first dose June 1st, but it was too late. The doctors kept pushing the machine till they couldn’t push it any higher and he still wasn’t responding. We prayed day and night for a miracle, but even though we didn’t want to admit it we all knew he wouldn’t come out and even if he did he wouldn’t be the same. Not only would he have to deal with his disease, but he would also have to live with possibly half a lung and being brain dead. We finally just let him go and he passed away at 2:30 am June 2nd from LCH.