By Nicole Jones, daughter of cancer survivor JoAnn Jones
Growing up with a parent battling cancer
When someone is fighting cancer, it is easy for well-meaning people to focus all of their attention on the cancer patient and overlook those closest to them who are also feeling the effects of the disease, especially children and other family members. As the proud daughter of cancer survivor JoAnn Jones, I wrote this blog as a way to share my journey, helping others understand my mother’s disease and hopefully assist others as they cope with the many highs and lows that come with cancer diagnoses and recovery.
It was a normal day…
In October of 2012, my mom was driving me to high school one morning of my freshman year when she told me that she was leaving work early for her annual mammogram. I remember asking her a few questions about what a mammogram was, but I never thought anything would come of it. When I got home later that night, she told me they found cysts in her breast, that it was completely normal for women to have, and that she scheduled a biopsy to ensure nothing was wrong.
My mom had never shied away in talking to me about anything, let alone health problems. This is something I have learned to appreciate because once she was diagnosed with cancer, it made me keenly aware of the life challenges she struggled with, and it truly brought us closer. During this time of uncertainty, she kept me in the loop and told me everything she knew to make sure I understood to the best of my ability. I never liked dwelling on the topic for a long period of time, and I tried to avoid talking about it as much as possible. I never wanted to be the one to bring up negative feelings, as if that would somehow change the diagnosis.
“My doctors think it might be cancer…”
Hearing the Words
A few days after the biopsy during a normal conversation, I asked my mom if she had received the results from her doctors. With a troubled look on her face, she told me that they wanted to do more tests because, “My doctors think it might be cancer.”
“My doctors think it might be cancer…” isn’t a sentence you ever want to hear, especially from your mother when you are 14 years old. I was shocked, especially because my mom was a generally healthy person who never displayed any symptoms. She was always proactive about her health, making a point to have an annual physical and get screened for cancers at the recommended ages.
One reason I was deeply disturbed by the news was because cancer and its effects weren’t new to me. A few years prior to my mom’s diagnosis, an aunt succumbed to pancreatic cancer and one of my grandfathers was treated for prostate cancer. After watching their struggles, I associated the disease with fear, harsh recovery and loss – nothing I was prepared to experience again, especially with my mother as the patient.
My mom remained open and honest with me, telling me the MRI she had scheduled would be key to learning the severity of the situation. I hesitated to ask her anything else because I didn’t want to know the possibilities of what could happen. I now know this is a common response for teenagers whose parents are battling cancer.
After the MRI, my family’s life became a whirlwind. Not only did the scan determine my mom had Stage I breast cancer, it also detected a tumor on her kidney. After more scans and tests, my mom was diagnosed with not only Stage I breast cancer, but also Stage III kidney cancer, including a cyst on her pancreas that was cutting off circulation to her spleen.
Letting the diagnosis settle in
After all the diagnoses, there was procedure after procedure and test after test, and I shut down a bit. My mom decided to go out of state for a second opinion, so I stayed at my grandparents’ house during midterms. The long distance and frequent house changes with my mom at appointments hours away disrupted my day-to-day life, and nothing ever felt normal.
From October to the end of December, I didn’t tell any of my friends or teachers about my mom’s situation. Not only was I afraid they would treat me differently, I was also afraid to say out loud, “My mom has cancer.” After that it would be real, and I would be faced with confronting the reality I was trying too hard to avoid. I have learned that this is typically the hardest thing for children of cancer patients to come to terms with – the fact that what they are experiencing is real.
In January of 2013, my mom scheduled surgery to remove her breast cancer, and in February surgeries for her kidney, pancreas and spleen. I had to miss class to be there for her, so before I left I told my teachers about my mom’s diagnosis. I was met with sad eyes and warm hugs. I also made the decision to share the news with two of my friends so they would know I wouldn’t be at school for a few days. It was like a burden was lifted off my shoulders when I finally felt comfortable enough to confide in someone about what was happening.
Opening Up
In the following months, I experienced lows and highs. I was met with the stark reality of how sick my mom really was, from watching her being fed by a tube to seeing her eat ice chips for a week. But along with the negative emotions, I was also met with so much support from classmates, friends, teachers, school administration and my mom’s co-workers. Neighbors brought my dad and me dinner, and my teachers let me take my time to complete homework and tests. My school counselor met with me frequently to make sure I started talking more about how I was feeling with respect to my personal boundaries.
When my mom was released from the hospital, it was an uphill battle. There were days where she was laughing and cooking, and days when she got so sick she had to be rushed to the hospital because her blood sugar was too low. When everyone was worrying about getting a date to formal, I was making my lunches and organizing schedules of how I’d get to school since my mom couldn’t drive and my father had to be at work early in the morning. Taking on serious responsibilities around the house and growing up faster than my friends were major adjustments for me that I resented for a long time. But because of these adjustments, I have now come to realize I wouldn’t be the person I am today if I hadn’t had those experiences.
By the time summer rolled around, I had grown accustomed to my “new life” of going with my mom to doctor’s appointments and radiation treatments. For the first time, I got to spend a summer with my mom, who before this was a full-time businesswoman. Looking back, that summer and all of the summers since her treatment have been the greatest of my life because she’s been there, living them, with me.
Tips for Handling a Parent’s Diagnosis
There are hundreds of different cancers with hundreds of different outcomes, but some things remain the same no matter how the disease progresses. Here are some tips for kids and teens who are coping with a parent’s diagnosis:
- Don’t close yourself off to people who want to help you. I say this from experience, because I did exactly that and it didn’t help at all.
- Don’t be afraid to keep talking to your parent. You are NOT a burden to them and you won’t worsen their disease by talking about it. Talking to them will also give them back some humanity that can be lost along the way.
- Don’t let life pass you by. Sometimes you may feel selfish if you start doing something fun when you have a sick parent at home, but try not to feel guilty. It will hurt your parent to see you not having fun, especially if they think they are responsible.
- If you have the opportunity, go with your parent to the doctor. It will help you understand the disease, and it also gives you a chance to meet the person who will be instrumental in your parent’s treatment.
Also, parents who have cancer, please be aware that your child or teen will know something is wrong even if you don’t tell them. Be upfront with them and let them ask you questions when they arise. Having them as a part of your journey will grow your relationship and make it stronger.
STRAIGHT TO THE POINT
Mary Bird Perkins Cancer Center offers a wide variety of resources to assist cancer patients and their families throughout their cancer experience. To learn more about the resources offered, visit https://marybird.org/survivorship/.
- Nicole, daughter of cancer survivor JoAnn Jones, was a high school freshman when her mother was diagnosed with multiple cancers.
- She reflects back on the impact this period had on her life and offers tips for others whose parents have been diagnosed with cancer.
- One of the then 14-year-old’s main struggles was talking about the diagnosis. Today she encourages fellow children of cancer patients to confide in someone to help them get through this challenging time.