Matthew Shem Barney (Matt) was born on April 9, 1985, five weeks early. He weighed 5 lbs, 4 oz and was in perfect health. His sister, Kimberly (Kim) was born on December 30, 1987. Matt was the typical rambunctious, healthy boy up until he was 5 1/2 years old.
In October 1990, he started running a fever and had a swollen gland on the right side of his neck. We took him to his pediatrician, Dr. Almgren, who gave him an antibiotic. His fever and swollen gland both disappeared. Exactly one month later, in November 1990, his fever and swollen gland both reappeared, but this time he also had a pronounced limp in his right leg. We took him back to the doctor, who prescribed a stronger antibiotic. This was Monday of Thanksgiving week and Dr. Almgren instructed us to bring him back in on Friday if he still had these symptoms. By Friday, nothing had changed so we headed back to Tucson (1 hour away) and met his doctor at the clinic. They were actually closed that day for the Thanksgiving holiday. He examined Matt and told us he was admitting him so he could find out what was going on.
Dr. Almgren ordered a bone scan for that Saturday morning so he could see what might be wrong with his leg. We remember the bone scan seemed to take a really long time, which made us more nervous. We soon realized that the bone scan was done but they were waiting for the doctor to get there, as they had called him in to view the results. At this point, cancer was not even on our radar.
Dr. Almgren came and got us out of the waiting room and took us to a small consultation room. He proceeded to tell us that Matt had cancer, it was in his bone marrow and had surfaced on the bone in his leg, hence the limping. At the time, there would need to be more testing done to determine what kind of cancer he had, but the doctors thought it was some type of leukemia. This was November 25, 1990. We remained in the hospital through Tuesday so more tests could be done. When we were discharged on Tuesday, we were instructed to check in on Thursday at the cancer center across town. We checked in and his new doctor, Dr. Hutter, gave us the most devastating news: Matt had Stage 4 Neuroblastoma. I remember thinking that was the biggest, most unfamiliar word I had ever heard. In fact, Dr. Hutter wrote it down for us so we could explain to family and friends. It didn’t take long for it to become a word that was commonly known to our family. Since this was before internet, we had no way to do research on it. Dr. Hutter had given us about a half-page of information on Neuroblastoma, stating that’s all they had at the time.
We were jumping into an unknown world with everything we had. We had to trust Matt’s medical team and our Heavenly Father 100%. We had no other choice. To say we were terrified to have our child’s life lie in the hands of strangers was an understatement. What else were we going to do though?
We then embarked on the roller coaster journey of childhood cancer, a journey we never imagined we’d have to take. The doctor stressed to us that Matt probably wouldn’t make it past this first hospital stay. Until this day, we had never heard of childhood cancer before. Chemo started, then low blood counts, fever, hospital stays and blood transfusions. He had chemo up through the end of July, then surgery to remove the tumor in August. At this point he was ready to go for a bone marrow transplant.
The bone marrow transplant had to be done in San Diego, CA. We drove there with the intention of attending a couple of appointments and returning home until they could get it scheduled. They decided to start the process as soon as possible and had us stay. It needed to be done while he was in remission so time was of the essence. The bone marrow transplant was one of the hardest things our family has ever been through. To see your child so sick that they are literally on death’s door is so heartbreaking. It was a very scary experience for all of us.
Matt was in remission after the bone marrow transplant in Fall/Winter 1991 and relapsed in December 1993. His treatment after relapse was very intense. He was often very sick. During this time, he had a tumor appear on his cheek, which required six weeks of radiation.
Despite all of these treatments and hospital stays, he lived his best life throughout those years. He never once complained. He absolutely loved to fish, and would fish every day he didn’t have to be at the hospital. He got to meet some amazing people, some famous, and all who are angels on earth. We are sure all of this uplifted his spirit and kept him going. We are so grateful for everyone who played a part in making his life so much better during those years. We’re also very grateful for our family and friends who stepped in to help take care of Kim. We never could have done it all by ourselves.
When Dr. Hutter initially told us it was Neuroblastoma, he also said, “Things as serious as this can either make or break a family, so it’s up to you how you are going to let this affect you”. At that moment, we vowed that we weren’t going to let this break us. We all worked together, supported each other and respected each other’s feelings because they were bound to be different for each of us.
In every situation, no matter how bad it seems, there is always something to be grateful for, you just have to look for it. I’m (Donna-mom) so very thankful for the many opportunities I had to spend so much time with Matt - traveling to doctor’s appointments (one hour each way) and spending many days and nights in the hospital. We made some amazing memories that I will cherish forever. His dad Shem had to keep working so couldn’t be with us all the time. In all those five years, we never left Matt in the hospital by himself. We needed to be his biggest advocate and we took that assignment very seriously.
Matt passed away on November 26, 1995, five years and one day after his diagnosis, also on Thanksgiving weekend.
