What are the challenges and concerns associated with being a parent of a young adult with cancer?

Families are turned upside down when cancer invades and changes everything. Mothers and fathers watch, desperately, as their child begins the biggest fight of his/her life—the fight FOR life. Battling cancer is an evil that no child should have to bear. Having a child with cancer is an evil that no parent should have to bear. Yet, cancer keeps coming, children keep fighting and parents keep doing all that they can to keep their world from falling apart.

Diana Ulman knows all too well the heartbreak of having a child with cancer. Her son, Doug, was diagnosed with chondrosarcoma—a cartilage tumor on a rib—at the age of 19. Her life changed forever when she heard the news of his diagnosis and was thrown into the mysterious world of cancer treatment. No mother wants to see her child struggle and suffer. No mother is prepared for the damage that cancer inflicts. Diana had to learn the hard way how to cope with the fact that her son, who previously was a healthy, active, normal college student, was sick.Diana Ulman B&W

“My first reaction to the news that Doug had a tumor in his back was shock, followed very quickly by denial, fear and desperation. I only wanted to know when I would wake up from this nightmare. As conversations with doctors and family members continued, it became clear that I was awake and that we were living this drama. Emotions ran through me in no particular order. In any given moment I felt anger, acceptance, resolve, disbelief, confusion and hope. Depression set in, followed by determination, exhaustion, sadness and motivation. I could be infused with energy and fight and then overwhelmed with tears and pain,” said Ulman.

Young adult cancer is tricky. The patients are not children, who rely on their parents for guidance. They are not adults, who make their own decisions. They are young adults—stuck between the stages of dependence and independence. They have their own set of needs and challenges, and when cancer is thrown into the mix, these unique needs and challenges begin to multiply.

“Just as Doug should have been separating from family and becoming more independent, he was [being] pulled back into a dependent role due to the need for family help and support. He was in college 400 miles away from home. Living arrangements complicated the situation. ‘Should Doug movehome and give upschool and peer support, or should he stay away from home and be far from family support?’ ‘Should he travel back and forth and then need doctors in both locations?’ As Doug was in school in Rhode Island, and we live in Maryland, we made sure that there were medical and emotional support systems for Doug in place both in our hometown and at school,” said Ulman.

Having a child in distress forces all parental instincts to kick in. It is a parent’s duty to protect his/her children, but some things are beyond anyone’s control. It is difficult to constrain this unconditional love and desire to help, so many parents come across as overprotective. As young adults are transitioning into adulthood, they do not always like “mommy” and “daddy” telling them what to do. Diana found a way to balance Doug’s desire for autonomy and her need for involvement.

“As a parent, I found myself walking a tight rope. For all these years I had managed our children’s health care. But now that Doug was an adult this was his situation to manage. The final decisions were up to him. We were lucky that we talked about the medical issues as a family. Doug welcomed us to his appointments and we talked with the practitioners together. But we were not in charge—he was—and we had to respect his wishes and his autonomy. I worked very hard not to hover,” said Ulman.

It can be hard for devoted parents to accept the fact that there is little they can do to rid their child of cancer. However, sitting back and doing nothing is never an option. There are many things parents can do to help ease their child’s suffering and make the cancer journey somewhat less stressful. Family can be one of the strongest support systems, so sticking together can help with recovery, as well as provide comfort for the rest of the family.

“If I were to give only one piece of advice to a family dealing with cancer, it would be to keep talking. When a family member becomes ill with cancer, the entire family becomes ill with cancer. It was extremely important for our family to avail ourselves of professional counseling, allow for tears, express love openly, maintain a positive atmosphere, communicate honestly and remember to rely on humor. We rented funny movies—Doug laughed until his side hurt too much,” said Ulman, who also found relief in writing poetry and connecting with other mothers of cancer patients.

Cancer is no walk in the park. It is scary, painful, depressing, mysterious, draining, stressful and confusing for all involved. It is a thief: a thief of youth, a thief of courage and a thief of life. Cancer forces parents to hold their children and tell them that everything is going to be all right, when in truth, there is no knowing what tomorrow may bring. Cancer patients must be strong to defeat their disease, and cancer parents must be strong to help them see it through.

Diana Ulman
UCF Founding Member