Carter was born June 17, 2004. We had eagerly awaited the arrival of our second son and brought him home to be loved by his parents and 3-year-old brother. During a routine newborn follow-up the pediatrician noticed that his "soft spot" was hard. An ultrasound discovered hydrocephalus. As we waited two more days for an MRI Carter became symptomatic. On his sixth day of life he had the MRI without any sedation because he was so lethargic. It was then discovered that he had a massive tumor on the brainstem.
He was immediately admitted to the ICU at the Children's Hospital of Austin. Within an hour he needed an emergency intubation. After a rocky night he underwent surgery with a near total resection. The entire tumor could not be removed as part of it was growing into the brainstem. The oncologist explained to us that the tumor pathology was ATRT, an extremely aggressive cancer with virtually no response to treatment. In spite of the grim prognosis we felt we needed to try and fight this disease. Carter spent 85 more days in the ICU with his parents and other loved ones constantly at his side. He endured several more brain surgeries, a tracheostomy, and an intense round of chemotherapy. The treatment left him with numerous complications including internal bleeding, liver malfunction, bacterial infections, and the need to have his head tapped for spinal fluid 3 times a day. His life hung in the balance many times from the effects of chemo. Through a heart-wrenching decision process we decided to not put him through more treatment but rather to take him home and shower him with more love than ever imaginable. Every specialist agreed we were making the best decision. After 6 weeks his counts were finally high enough to leave the hospital.
Taking him home meant 24-hour care to manage his ventilator and feeding tube and administer meds. It was a labor of love that we felt honored to perform with the aid of a few caring nurses. Just shy of 5 months old Carter passed away peacefully at home in the arms of his parents. The time we spent with Carter was precious. He smiled everyday after coming home and even went on a "family vacation". During his short time on earth he touch many lives; everyone who met him or even just heard about him fell in love instantly and their lives were changed for the better. He formed a special bond with his big brother that will never be broken. We feel a tremendous loss in our home, but we know Carter had a greater purpose to fulfill. He fought hard, endured well, and now he can rest. Carter's smile lives on in the hearts of all who knew him.
Carter's website can be found at http://www.caringbridge.org/tx/carter.