By Linda Forbes
(Mother of Brian)
Our son Brian had the most infectious smile and sense of humor. He loved sports and was an avid fan of game shows and all sorts of trivia. He loved his fiancé, Kerri and his family and friends more than anything. Brian was born with a birth disorder called neurofibromatosis. This meant that tumors could develop on any nerve ending in his body. When we first discovered that Brian had this disorder, we could not truly grasp the magnitude of this health issue. As parents of a child with a genetic disorder, our guilt was enormous. We came to discover that Brian had been a spontaneous mutation and that the disorder was not passed down from either of his parents. Even though we felt a little less guilty, we quickly realized how many health problems he could develop.
I tell you this because he had to be seen by specialists that treated his various symptoms. He had to be scanned as a child to see if tumors had developed. He never had a full body scan, only MRI of his brain. Looking back at this, he should have had a full-body scan, but hindsight is always 20/20. He remained relatively asymptomatic throughout his childhood and teenage years.
In November of 2012, he complained of abdominal pain and was seen by his primary care physician. They sent him for a CT scan of the abdomen which showed that he had a mass in his abdomen which they thought was a plexiform neurofibroma. His doctor wanted him to see a surgeon as soon as possible but because Brian thought it was not something to be too concerned about, he put off seeing a surgeon and made an appointment for May of the following year to see an Neurofibromatosis specialist in NYC. In April of 2013, he was seen in the ER due to severe abdominal pain and another scan was done. The mass that was seen in November was now extremely large and they suspected that it was malignant. They followed up the scan with a biopsy which confirmed their suspicions that it was a Malignant Nerve Sheath Tumor, an extremely rare soft tissue cancer, a sarcoma.
We were so shocked that this tumor was malignant and after much research, we realized that someone with neurofibromatosis had a greater chance of developing this cancer. At this point, he needed to be seen by the NF specialist right away. Brian’s appointment was moved up to the end of April and he was seen at NY Presbyterian Hospital. Following that appointment the neurologist reviewed the slides and referred Brian to the pediatric sarcoma team at Memorial Sloan Kettering Cancer Center in NYC. His cancer was considered a pediatric cancer and he was treated on the pediatric unit at MSKCC. From the beginning Brian’s prognosis was not good since the tumor was so large.
He began his treatment with four rounds of extremely toxic chemotherapy. Since the tumor was in his abdomen, he had horrible nausea and vomiting throughout the treatment, spending more than 120 days on and off in the hospital. He lost 80 pounds and suffered terribly. All the while, Brian tried to keep positive and never failed to believe that he would eventually get better with the help of his family and friends and the doctors. He finally had surgery in September of 2013 but the surgeon could not remove the entire tumor because of its location. The chemotherapy did little to reduce the size of the tumor. Brian received two more rounds of chemotherapy following the surgery and eventually went home to try to live life like a normal young adult. He recuperated at home and went with his fiancé on a much deserved vacation in January of 2014. After his follow-up scan in February of 2014, he was told that the cancer had started to grow again and that it was a wait and see situation. He was to be scanned again in May but one of the smaller tumors grew at an alarming rate and cut off the blood supply to his lower intestine. He had emergency surgery on April 22nd, this time having an ileostomy bag that he would have for the rest of his life.
Brian was told at that time that there was nothing further that could be done to keep the cancer from growing. It was throughout his abdomen and he had less than six months to live. He actually did not ask them how much time he had, but we knew since we had talked with Brian’s doctors. Brian really did not want to know how much time he had; he just wanted to live what time he had left. Up until the last moment of his life, he continued to see his friends and family and just wanted to spend time with them.
Brian had enormous courage throughout his illness. He just wanted to get on with his life and never asked the question, why me. He had great faith that was tested many times, but he always found comfort in knowing that he had another life after this one. He was a man of few words but always had a smile at the end of the day.
He was discharged from the hospital May 17th and passed away on June 1st. How do you sum up someone who has suffered so much and is so young? We have a difficult time expressing the impact that his life had on so many. There were over 300 people as his Funeral Mass and the wake. He truly was not successful in the way we measure success. He didn’t graduate from college. Always struggled with learning difficulties and had a short attention span. However, he was the best friend a person could have, and had tremendous sympathy for all who struggled with any adversity.
The Forbes family often thought of the Hugs for Brady Foundation because we realized how important that foundation was to families who have experienced caring for a child with cancer. There are so many expenses that are incurred that are just impossible to keep up with. Even though Brian was 26, he was treated on the Pediatric Unit so we had a lot of contact with the patients and their families experiencing their courage and tenacity.