My life as I knew it ended on May 26, 2002, when my eighteen-year-old daughter Jeannine was diagnosed with alveolar rhabdomyosarcoma, a rare, aggressive and incurable form of cancer. Jeannine died on March 1, 2003, at the age of 18, approximately ten months after diagnosis.
When she was diagnosed, the experience itself was surreal. In the blink of an eye, I went from the everyday joys of being a parent to a vibrant daughter to the horror of having that same child diagnosed with a terminal illness. My subsequent research revealed that the five-year survival rate for her cancer was only ten per cent.
Needless to say, I knew that the chance of me experiencing every parent’s worse nightmare was extremely high. However, I had to maintain a hopeful outlook that through a miracle of science or divine intervention, Jeannine could somehow be cured.
Even if Jeannine ‘s cancer went into remission, I still would not have viewed life in the same light. From my perspective, a cancer diagnosis changes priorities and reinforces the very preciousness of life that many not afflicted with life altering challenges too easily take for granted.
The negative part of my experience with Jeannine’s illness, in addition to her actual death, was the pain and suffering that I witnessed for the majority of her illness. Watching her physically and spiritually deteriorate triggered grief before her actual death. I spent most of her final days at work because I could not bear to watch her suffer anymore.
There are some positives that I have taken away from the experience as well. I was able to, through the efforts of my former boss at my place of employment, take a three -month paid leave when Jeannine was diagnosed. This allowed me to spend some quality time with her and create what would be some final and long lasting memories of my life with her on earth. Jeannine through the grace and toughness that she displayed throughout her illness also taught me about courage in the face of insurmountable odds, selflessness and the power of love in the midst of dire circumstances. In death, she remains my greatest teacher.
As a result of my own experience, I would like to offer some suggestions for families who are dealing with loved ones who have life threatening illness:
- If need be, encourage your family member to get a second or third medical opinion if necessary. It is important for him/her to examine any and all available treatment options.
- Do research on the specifics of your loved one’s illness and any clinical trials for which they may qualify.
- In between appointments, write down questions or concerns that you wish to bring up with your health care provider.
- Help the terminally ill member to function as autonomously as possible. Assisting our terminally ill loved ones to feel somewhat normal in the midst of the chaos created by treatments and hospitalizations will be beneficial to both him/her and the family.
- Develop a strong support network of professionals who are trained to work with families who are dealing with the illness of a loved one and/or other families who are experiencing the same challenges.
There are days when I wish that I could become redefined as a person because my daughter survived cancer. Jeannine’s death and the challenges that I faced and still face as a result, have, however, motivated me to devote my life to helping others affected by life altering events. In the meantime, I will continue to celebrate those that have survived cancer while praying that someday we live in a world that is cancer free.