Airman shares story of loss to raise awareness of childhood cancer Published Oct. 22, 2014 By Karen Abeyasekere 100th Air Refueling Wing Public Affairs ROYAL AIR FORCE MILDENHALL, England (AFNS) -- Ty Nordstrom was just 4 years old when he caught a large catfish by himself. "It weighed around 7 lbs.,” said his dad, Master Sgt. Lyle Nordstrom, the 352nd Special Operations Group Inspector General superintendent. “He was very proud of himself -- it was a long, hard-fought battle between the two of them." That wasn't the only battle Ty faced at such a young age. He soon had to deal with something much scarier -- cancer. At the time, in 2007, Ty and his family lived in Abilene, Texas. He hadn't yet reached his fifth birthday when he was diagnosed. Ty died Nov. 13, 2009 - a month before his seventh birthday. He'd been suffering from non-rhabdomyosarcoma. Non-rhabdomyosarcoma is a soft-tissue sarcoma and it's a cancer of the supporting tissues of the body, such as muscle, nerve or fat tissues. Treatments include surgery, chemotherapy and radiotherapy. "He started suffering from a stiff neck, and when he turned his head left to right, he would compensate by moving his shoulders, so originally we were being seen for that," Nordstrom said. The family had been going to the hospital for roughly a year when things started getting worse. Ty's general doctor sent him to physical therapy for a while, but his neck wasn't getting any better. So his parents took him to a neurologist. "They did a lot of imagery but didn't see anything of concern; that was probably about February 2007," Nordstrom said. "But he just kept getting worse and worse - the pain was becoming unbearable for him; almost paralyzing in his neck, to the point that most of his day would be spent laying down." In October 2007, the tiny Texan had a follow-up with the neurologist for an MRI. It was then that doctors discovered Ty had a huge cancerous mass in his neck, around the C1 and C2 cervical vertebrae, the first being closest to the skull and the second next down the spine. Wondering why it hadn't been spotted before, Nordstrom and his wife spoke with the neurologist, who then had the imagery checked by a neuro-oncologist to ensure nothing had been overlooked. "But there were no signs of any cancer on there," Nordstrom said. "It was very aggressive and fast-growing." The young boy then had to undergo an MRI, CT scan, X-rays and an electrocardiogram. As much as it was a struggle for Ty, seeing their son suffering caused his parents unbearable pain. "We immediately thought he was going to die sooner or later, (and) then once they gave us the prognosis, it was even more grim," Nordstrom said. "When he was initially diagnosed, we stayed in the hospital for 30 days with him. They did a full body scan -- he had a cancerous mass above his kidney and another on his mediastinum, and it had spread throughout his abdomen. We lived in the hospital with him the whole time." The mediastinum is the central compartment of the thoracic cavity containing the heart, great vessels of the heart, esophagus, trachea, phrenic nerve, cardiac nerve, cardiac nerve, thoracic duct, thymus and lymph nodes of the central chest. Ty’s father said the doctors put his son on medication so they were able to control his pain. The initial round of chemotherapy seemed to help, and reduced the mass in his neck by about 50 percent, getting rid of most of the secondary masses. After 30 days, Ty's parents took him home. He continued chemotherapy for another seven months, before starting proton radiation treatment. The 6-year-old suffered nausea, vomiting and hair loss, but his dad recalled how brave his son was in the way he handled everything. Unfortunately, his struggle wasn't over. "Toward the end of the cancer, once the tumor started growing again, it started wrapping around nerves that controlled swallowing and other functions like that, so (Ty) was aspirating on food and liquid a lot,” Nordstrom said. “We ended up having to put in a 'G-button.’ That was quite a struggle for him, because he wanted that taste of food and candy." A G-button, or gastrostomy button, is a tube which is inserted into the stomach and used to feed or give medicine until the person is able to chew or swallow. Ty’s stay in the hospital lasted about two weeks and then he was sent home, where he passed away shortly after. For parents, the loss of a child can put a massive strain on couples. "I think we both struggled individually,” Nordstrom said. “It took a toll on our marriage for quite some time. We drifted apart and paralleled with our own grieving process; we were both going to individual therapy." Eventually the family moved from Abilene to England. "(The move) meant we could allow ourselves to heal better, and get away from all the emotional triggers in the area," he said. The couple has two other children; one 7-year-old and an 18-month-old. They're expecting another child in November. They do what they can to ensure the siblings remember their older brother. "Ty was an energetic, playful child,” his dad said. “He was always one to make a joke or pull a prank on somebody, and he very much loved the outdoors. One of his favorite activities was fishing, and anything to do with animals, whether it was feeding the ducks or seeing the animals at a local zoo." Since the loss of his son, Nordstrom said he and his wife have become advocates of childhood cancer awareness. "We try and spread the word about it through social media, and during Christmas we do a big toy drive in the U.S. called 'Ty's Toys,’” he said. “The toys are donated to Cook Children's Hospital at Fort Worth, Texas." The master sergeant also offered words of encouragement to anyone else that may be going through a similar situation. "You really have to find a good support network,” he said. “My wife and I found it helpful to lean on parents who were going through the same thing. Cherish every moment with your family."