This is the first in a series of profiles highlighting the stories of those fighting rare cancers, as well as their friends and family. This series was initiated by TargetCancer Foundation intern Alexa Parisi, who has also written the inaugural post below.
There is nothing like a mother’s love. It is the most unique, fulfilling, and unconditional love there is. As a mother, you want to do everything in your power to prevent your children from suffering of any kind. However, there are times when a mother cannot do anything besides love her child, when she cannot resolve a situation for her child. When it comes to rare cancers, sometimes the best treatment available is the love and support from family members – and that is exactly what Nancy gave to her son before his passing in 2009 from cholangiocarcinoma.
You go through a lot and you think you won’t forget anything, but you do… you think you’re going to remember those details in your mind forever, but you don’t. You really don’t.
John was a healthy, happy, active and bright child. Nancy reflected on her son as her “wanderer”, who had trouble sitting still and loved to explore new places and experience new things. It wasn’t until John was sixteen years old when he developed gastrointestinal problems – ulcerative colitis to be more specific. While it was not a severe case and was under control with medication, the diagnosis shocked Nancy, especially since there was no family history of gastrointestinal issues. However, John was living his life despite the diagnosis and was excelling at Fairfield University, where he soon got a job after his graduation. Little did John know that his wanderlust would be fulfilled; he took a three month vacation and drove across the United States, landed a job with National Geographic in Washington DC, then moved to France with his girlfriend Sarah – all within 2 years.
John during his climb of Mt. Kilimanjaro.
In October of 2008, John began to feel different. He had consistent stomach discomfort and decided to see a doctor. While Nancy thought the pain was caused by his ulcerative colitis, the French doctor thought differently, and suggested that John travel to Bordeaux to see a specialist. His visit concluded with news that every mother dreads to hear; they had found a mass in his stomach near his liver. That was all Nancy needed to hear to get on the next flight to France. After a biopsy, he was diagnosed with cancer of the bile duct, also known as cholangiocarcinoma; a rare cancer in general, but even more rare in young people. John was only 29 when he was diagnosed in November of 2008.
The French doctors believed that the best chance John had would be to return to the United States, which he did shortly after his diagnosis. He was not a candidate for liver transplant surgery, and ultimately came to the conclusion that he would undergo chemotherapy with the hope of reducing the size of the tumor and potentially giving him the option for surgery. He received chemotherapy at The Cancer Institute in New Brunswick, and took an active role in his treatment by educating himself about the different clinical trial options. John opted for the opportunity to participate in clinical trials with the dual goals of potentially helping himself, as well as helping someone else in the future. After about 9 months of chemotherapy, John and his doctor agreed to stop the treatment and he began hospice care in September 2009. Just one month later, John passed away.
Nancy described her son’s death this way:
Losing a child is like losing a leg – you never get over it.
Nancy’s goal as her son’s primary caregiver during his illness was to find the balance of being strong in front of him, while constantly reminding him how much she loved and cared for him. Letting her dark, inner emotions take over her demeanor would do nothing but accelerate John’s stress and decline. So, she opted to “pull herself up by the boot straps” and be strong in the face of negativity and tragedy, just how she was raised. After John’s death, Nancy learned that the most effective way to mourn was to celebrate his life, not dwell on his illness and death, but realizes that grief is different for every person. Of course, she has had days where emotions take over. But she takes it day by day and tries her hardest to live her life the way John would have wanted her to.
I made him a promise that we would be okay, and every day I have to keep that promise to him, because I owe him that much.
Nancy is so thankful for the last few months she spent with John, and firmly believes that being his caregiver has changed her for the better. She no longer “sweats the small stuff” and does not take anything for granted. Today, Nancy keeps in touch with support groups and foundations such as TargetCancer Foundation, and has even made many friends who have shared similar struggles. Their grief and shared experiences have brought them together, giving them strength and comfort.
We just try to remain positive and try and help other people and do the best we can every day.
Would you like to feature your story in a future profile? Contact Alexa Parisi at aparisi@bryant.edu for more information.