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Dialogue: Children’s Perspective on a Parent’s Diagnosis

A dialogue between two young adults who dealt with a sensitive issue no child wants to go through.

Katie McIntyre and Cayla Hanousek are young adults who had to deal with a parent’s cancer diagnosis. The AACR’s Survivor and Patient Advocacy Program spoke with them about how this experience impacted their lives.

Cayla Hanousek

Cayla Hanousek currently lives in Charlotte, NC, where she works as an interactive producer at MODE and is the founder of Step Up to the Fight. She graduated in the spring of 2011 from the Savannah College of Art and Design with a BFA in advertising design and is going on her 10th year volunteering and raising awareness in the community about cancer societies and the fight against cancer. She recently joined the Charlotte Chapter of the Leukemia & Lymphoma’s Society – Team in Training and will be participating in her first Triathlon in Washington, D.C., in September.

Katie McIntyre

In 2001, Katie McIntyre graduated from EMT school and began working at South Georgia Medical Center in Valdosta, GA, in the emergency department. After seeing firsthand the level of disparity in health care, she became involved on the ground floor of a health care initiative called the Lowndes County Partnership for Health, a free clinic for the working uninsured. After graduating with her degree in biology from Valdosta State University, Katie chose to continue her career in patient advocacy in the non-profit realm. She is currently the project director for a breast health disparities grant in Savannah, GA. In addition, Katie is the project coordinator for the Buddy Check 3 program, a collaborative effort between the cancer center and the local NBC affiliate to encourage women to obtain their mammograms.

SPA: How did your parents tell you about their cancer diagnosis?

Cayla: I was in my junior year of college when my mother was diagnosed with cancer. I was going through my fall quarter. My parents didn’t tell me until I came home for break. It was right before Thanksgiving when I actually saw my mom for the first time after her cancer diagnosis.

Katie: I remember it very well. It was October 12, 2010. I lost my grandfather on January 14, 2009, to skin cancer. My parents retired to Vero Beach, which is about six and a half hours away from me. My dad called and told me about his diagnosis very matter of fact.

Due to my career in the medical field and working in the ER, I immediately started thinking about what we (my family and I) needed to do next.

SPA: Were you adults when you were told this information?

Katie: Yes, I was 32.

Cayla: I was 20 when I found out.

SPA: Is there anything that you would change about how your parents shared their diagnosis?

Katie: I wish that I had been closer, face-to-face. But in retrospect, it was probably good that I wasn’t. After I hung up the phone, I broke down a little bit. I was very close to my grandfather and having just lost him, it was very scary.

Cayla: It was very strange going through that fall semester. I knew something was up because my mom had slipped, fell and cut herself. She was going to the doctor for her injuries and would drop little hints here and there about her cancer. I was in Savannah, GA, and they were in Wilmington, NC, which is five and a half hours away. It was hard to deal with the situation but I knew they wanted me to stay in school. I wanted to know what do we do next, how are we going to beat this. I probably went into a little bit of a denial. I didn’t know if there was necessarily a correct way to address a diagnosis.

Everything happened so quickly. She passed away quickly. I just wish I would have gotten a few extra weeks to spend with her.

SPA: What aspects of your parent’s treatment affected you most?

Cayla: Unfortunately, she was already in stage 4, so it was pretty bad when they found out she had cancer. They just basically kept telling me that she was having a problem with her head because she had a slip and fall and her eyes were bothering her. They didn’t really tell me anything. It was all kept a secret. My dad would break down on the phone, but he wouldn’t tell me what was going on.

SPA: Do you feel that they should have told you more details?

Cayla: It’s hard because my parents wanted to be the strong ones and they wanted to do what was right by me. They wanted to keep me in school to ensure I finish my quarter. I honestly couldn’t tell you if it was the right decision. I think they were just trying to be parents and they were trying to let me be the kid.

Katie: For me, it was different because I was older and also because of my many years in the health care industry, I basically hounded them until they told me. Luckily, my dad is now in remission but at that time I wanted to get the best oncologist and the best of anything that they needed. My dad also did a lot of research on his own.

The biggest thing that I noticed about the radiation treatments is it “aged” him tremendously. My father started sounding tired and it was very difficult for him to recover from the actual treatments.

SPA: What is one thing that affected you the most?

Katie: I think probably the shock of the diagnosis was one thing but seeing him go through treatment and how much it changed his demeanor really affected me more.

Cayla: When I arrived home, I think my mom only had one chemo treatment and maybe one radiation in November. She had lung cancer and it metastasized to the brain, so by that point, it was inoperable.

The doctors informed us that she might live two years but from the time I got home, it was only about six weeks. It was very upsetting. I became her main caregiver because my dad was very unstable in handling the situation. Having to take her to the doctor and sit with her during treatment, you see just how drastic the changes are.

We would have a conversation one day and then the next she would have trouble remembering who I was. I saw her condition progress from her being my mom to not being able to function in that role anymore. That was the hardest thing. It’s definitely something that changes you forever. I was there when she passed away and it altered me completely. Luckily, I can be positive and celebrate her memory.

SPA: Who or what did you turn to as a support system?

Cayla: My mother’s mother was alive at the time and was one of my support systems. She was there for moral support. Believe it or not, my friends were also a main support system. They were there every step of the way. Being an only child I didn’t have any siblings to turn to. I had a lot of friends that were volunteers at the American Cancer Society. They would ask if I was okay and if needed anything. They would send us (gas) cards or little things here and there.

Katie: There are a lot of support groups for teens who are diagnosed with cancer and kids who have parents diagnosed with cancer, but as a young adult, you really don’t have any kind of formal support groups. I relied heavily on my brother.

He and I would talk daily. Since he lived in Orlando, he was able to visit more often. They were lucky enough to spend a lot of time together while my dad was going through treatment, so I would get updates from him.

SPA: What advice would you give to other children whether they are teens or young adults whose parents are diagnosed?

Katie: You have to keep your head up for your parents. You have to be focused on them and their wellbeing. Make them think that everything is perfectly fine in your life even though you are concerned about their welfare. It’s difficult but I think that keeping a strong united front is important.

Cayla: Our parents care for us our whole lives and now it was time for me to care of my mom. I turned to my mom and I said, “Well you know, it’s now my turn to take care of you,” to let her know that everything was going to be okay.

I think her biggest fear was that if something were to happen to her that she wouldn’t be here for me. I had to remind her that the 21 years she spent with me were amazing and I’m lucky we had those years together.

It was just being able to let them know that it was okay, like Katie said. You had to make sure that they know everything is okay in your life. It’s a time to be selfless and reach out and help them. No matter what pain you are going through, their pain is so much worse, especially when it’s physical.

Cayla: Don’t be afraid to reach out. I just recently had a friend come up to me and tell me she has been frustrated for the past 13 years, and seeing how I have celebrated my mom, and moved on, she wants to do the same.

Instead of being mad at the situation because unfortunately that’s something we can’t control, figure out how you can keep them in a positive aspect of your life.

SPA: What advice you would give to parents who need to talk to their children about their diagnosis. How can they be strong for their kids?

Cayla: I think the advice that I would give to parents is to not be afraid to answer their kid’s questions. Being out in the open, explaining things, and not necessarily keeping things in the dark, brings you closer instead of pushing them away or hiding the situation.

Katie: I completely agree with what Cayla said. Honesty is always the best option because your children are going to worry about you. If you both know what is going on – it is never easy, but it makes it easier.

SPA: Thank you ladies. There are a lot of children whether teens or adults going through the same situation – they just don’t know how to deal with it. The biggest thing is letting them know that they are not alone. I am hoping that this dialogue will help them understand that there are other people who have gone through this. They are not alone in this.

Cayla: I think one shocking thing I found out in establishing this support group in Savannah is that some people I knew before have now confided in me that they, too, battled cancer. It’s very surprising when you are a part of a group, just how many people open up. People didn’t seem to open up until I said something first. Many people suppress their emotions; this is not something we need to keep in anymore because so many people go through the same circumstances.