By: Joyce Carlin
Sharing Gilda’s
During my career as a social worker at UW Health Kids in Madison, I provided services to children diagnosed with cancer and their caregivers. I was fortunate to have met many incredible patients and families over the years. They taught me about life, unconditional love, and perseverance. They taught me what it means to trust, exercise patience and faith, extend forgiveness, embrace compassion, humility, and sometimes…how to surrender.
Many years ago, the parent of a newly diagnosed child said, “Walking through the doors of the oncology unit was like landing on a different planet.” The environment, people and language were unlike anything she had ever experienced. My role was to advocate for patients and families and help them navigate their new world.
In addition to assisting parents with concerns related to employment, insurance, lodging, meal assistance, sibling concerns, or myriad of other issues that came up, I provided information about resources specifically designed to provide support to patients and families. I included information about Gilda’s Club in every resource packet. Over the years, I provided information about Gilda’s Club to hundreds of patients and families.
Cancer Enters My Life
After my parents died, I assumed the role of family party planner, which included organizing our annual family reunion, which was typically held at a park. It was the summer of 2016. I went to the park early to decorate the pavilion before family members started showing up.
One by one, cars pulled up and the pavilion quickly filled with conversation, laughter, and storytelling. Children ran all over the place and it truly appeared that our annual family reunion was going to be the best one yet.
When my youngest son’s wife and two little daughters arrived, my son wasn’t with them. My daughter in law said my son went to the Emergency Room because he felt short of breath after cutting the grass earlier that morning. It was a humid day and according to my daughter in law, my son had trouble “catching his breath”.
My son minimized the situation and insisted that my daughter in law take the girls to the reunion. He planned to join us after he got checked out. My son never showed up at the reunion. He called his wife to let her know he had been admitted to the hospital. When my husband and I arrived at the hospital, my son said an MRI revealed fluid around his heart.
Doctors drained one and a half liters of fluid from his pericardium (the sack around his heart). He was discharged to home the following day. Everything seemed fine until the same thing happened approximately one month later. This time doctors sent a specimen to a nearby university hospital for testing. Unfortunately, the hospital couldn’t find a reason for fluid to be accumulating in my son’s pericardium.
When it happened yet again, things were different. When the doctor inserted the needle into my son’s chest, it hit something hard. My son saw the doctors look at each other and they immediately aborted the procedure. My son sensed that something was very wrong.
As it turned out, there was a tumor, the size of my son’s heart, rising up off of his heart. The tumor had been there the entire time, but because my son was an otherwise healthy 32-year old man, no one suspected he might have cancer growing on his heart.
Doctors sent the fluid specimen to MD Anderson in Houston, Texas. My son and his wife were instructed to fly to Houston from Iowa the next day. The oncologist in Houston told my son he had cardiac angiosarcoma, an exceedingly rare and aggressive malignancy which occurs in only 0.0001% of the population and leaves those affected with an average survival time of a mere six months.
Managing During Treatment
Family members and everyone who knew my son were blindsided by the news of his cancer diagnosis and prognosis.
I applied for Family Medical Leave and stood ready to help the family in whatever ways they needed me. Every six weeks my son flew to Houston to meet with the oncologist who was managing his care. Fortunately, his wife’s insurance approved getting chemotherapy treatments close to home, but my son still had to make the trek to Houston every six weeks. Leaving his family was very hard on him. My son’s true passion in life was his role as husband and father.
Every six weeks I drove to Iowa to care for my granddaughters so my daughter in law could work. Despite being informed by the foremost experts and the latest statics that he faced certain and imminent death, my son rose gratefully each morning for three years radiating unfathomable positivity, courage, endurance, and strength that will forever serve as humbling examples for all who had the privilege of bearing witness.
Through it all, it never dawned on me to step away from my job serving children diagnosed with cancer and their caregivers. My son was my inspiration to keep living each day to the fullest, serving and supporting others to the best of my ability.
Remembering Gilda’s
Approximately one year into treatment, my son’s oncologist determined chemotherapy had shrunk the tumor on his heart as much as it was going to without causing further toxicity to his body. The surgeon moved forward with conducting open heart tumor debulking surgery.
Missing his girls, my son made it his mission to return to Iowa as soon as possible. He flew home a week later. Upon recovery he returned to work, and more chemotherapy.
Because my son knew full well that he wasn’t going to survive his cancer, he’d prepared a bucket list. In 2017 he promised to take his family to Disney after Christmas. When the family returned home from Disney, my daughter in law called to let me know my son was having a difficult time breathing. He hadn’t slept well on their trip and he needed to use a wheelchair their last day in Florida.
My daughter in law was scheduled to work the following day, so I drove to Iowa and took my son to University of Iowa Hospital. An MRI revealed my son had relapsed. He was in heart failure. The doctor wanted to admit my son to the hospital but my son refused. Any time he had left had to be spent at home, with his daughters and wife.
It was during this time that I began to question my capacity to fully be there for my son and his family while also being fully there for my patients and their families. I knew I had what it would take, but I also knew I couldn’t do it alone. I would need support.
That’s when I remembered Gilda’s Club.
The next day I called Gilda’s to schedule a new member appointment. I started attending a Family Night support group on Tuesdays. It was the best decision I could’ve made for myself. My group was so special. It didn’t take long to form a connection with each person in the room. I experienced community in a very unique and real way.
Being part of the Gilda’s Club community positively impacted my mental health. And I found that truly sharing life with others fostered personal resilience. Gilda’s was just what I needed to see me through.
Surviving Loss
As is typical of the hero’s journey, my son came into his own during his battle with the most ultimate of foes. The last four months of his life were incredibly difficult. I thank God for the gift of my son and for the legacy he left behind. His daughters exude many of their father’s beautiful character traits. They are witty, sensitive, compassionate, empathic, and loving.
My son’s “heartbeat” truly lives on in them.
Characteristic of his generous nature, in passing my precious son provided me with a final precious gift…when I feel that I cannot possibly go on, that a challenge is too tough or my goal is unrealistic, I remember my son and know that I will go on, that no challenge is too great nor goal unachievable.