Our 13-year-old daughter, Kirsten, was living the normal life of a seventh-grade student. Before an annual doctor visit, she asked her mother if she should mention that her menstrual cycle stopped for about six months. Our pediatrician was concerned and ordered several tests. Several experts recognized an increase in her hormone level based on the test results, but it seemed everyone was unclear of the exact cause. She received advice to change her diet, take vitamins, increase exercise, etc. After many different doctor visits, blood tests, and an ultrasound, an MRI was finally done. Having had so many tests with inclusive results, we did not have high expectations of any new theories.
I received the surprising call on a Friday morning at work from Kirsten’s pediatrician that they had found the issue. Based on the MRI and other test results, she was diagnosed with a Sertoli-Leydig Cell Tumor in her left ovary. This was very rare. The pediatrician gave me the name of a gynecologic oncologist at the local hospital. I spent the entire morning on the phone talking to doctors and scheduling appointments. Between the shock of the news, talking to doctors, and scheduling appointments, before I knew it was the end of the workday. I left work early to go home and give Kirsten the news.
As a parent, this is such a very difficult situation. You always want to protect your children from difficult situations and help them get through challenges. During our discussion, I really felt the extreme weight of the situation. Not only that, we had to deal with the cancer diagnosis, but realizing that this 13-year-old is completely reliant and trusting of what you are telling her. We made quick, semi-informed, critical decisions relating to her health. Being in a completely new situation, you are trying to get as much information from doctors, reading and researching in a very short amount of time. As a parent in this situation, you feel completely powerless. You are relying completely on the doctors and medical caregivers to resolve the issue.
After meeting with a gynecologic oncologist and a gynecologic surgeon, we scheduled the surgery. I was surprised by the direct and honest conversations between the doctors and our daughter. I think as parents, we all try to shelter our children from harsh news, but the doctors were very open and honest in speaking directly to us (including Kirsten in all conversations). The optimism and professionalism they showed really gave us all confidence that we were moving in the right direction.
My daughter impressed us all with her positive approach to the situation. Instead of dwelling on the “Why me?” that could easily happen in a unique situation, she often talked about being thankful for the early detection, and let’s get this behind us. I think that a positive attitude was critical to get through the situation successfully.
As difficult as it was, during the surgery and recovery period, it allowed me to spend significant one-on-one time with my daughter. My wife was instrumental in the support too. The outpouring of support from family and friends was overwhelming. This overall support continued to reinforce the positive feeling during the recovery.
Having access to more information could have been the most significant way our situation could have improved. It might have helped us feel more informed if we could speak with people who have gone through a similar experience. We were challenged with moving at a fast pace in the treatment versus being very deliberate to gather as much information as possible. Hopefully, through our involvement in the NOCC and these types of publications, we could be a resource for someone else facing this type of news.
As Kirsten is getting ready to take the next step in life by going off to college, I look back on the experience with some key observations. As you are faced with a situation that is especially challenging, keeping a positive outlook is critical. Leaning on the support of family and friends really helps keep spirits high. As a person providing support, your constant encouragement really does make a difference.
Mike Burns is a husband and father of 3 daughters living in Pittsburgh. The entire Burns family continues to be active in NOCC Pittsburgh events including the walk/run and Teal Taps program.