I So Want To Be Around To Wish You A Warm, “Goodbye.”

Dear Cancer,

Shortly before you and I became closely acquainted, I was sixty years old, bouncing back from congestive heart failure, and at a crossroads in my life.  I knew I could not continue working for the rest of my life and I wondered what I was going to do after I retired in five, or six more years.  I had been working for over 40 years and the last half of my career was in very high stress areas.  I wanted to relax in my retirement and spend time with my wife, family, and friends.

I have a wonderful wife and I was looking forward to spending time with her. We are empty nesters. We have five grown children who are scattered all around the US; therefore some travel was certainly in our future. That was OK, but it didn’t take long before I realized that, outside of work, I really didn’t have any friends.  All my friends were work related.  My wife suggested that we needed to expand our social network and find some friends that were not work related.  We tried a few things, and we became regulars at a very nice neighborhood wine bistro. We learned a lot about wines and met lots and lots of new people, many of those we met are very close friends today. As good as that idea was, it still did not hold a candle to what you have done for our social life since we became acquainted.

Although you had some encounters with a few of my friends, I really did not know that much about you, particularly your interaction with children.  You’re so busy, you probably don’t remember, but we became acquainted in 2005 through my daughter, Beth Anne who lives in San Diego and was pregnant with my second granddaughter. She called me one night to tell me that my grandson Conor had something called stage IV neuroblastoma.  I remember it well, I was sitting at the kitchen table and I’ve never seen her so upset in my entire life!  At the time, Conor was about 16 months old and his mother was a researcher at the Salk Institute and his father was a cancer researcher at Scripps. For nearly 15 years, she had investigated you and your work. I had to believe her when she told me Conor had a good chance of dying and you were the one responsible.  I have to admit it was very difficult to believe or comprehend at first.

Back then when I was trying to find information on my computer, it was not as easy as it is today.  Every night when I came home from work, I would search the Internet and look up neuroblastoma to try to find out as much information as possible. I also was hoping to stumble across something that would provide a little hope. It took me a week of sorting through tons of terrible stats and news and then one night, I found an article about a little boy who was 8 years old and he was still alive after 5 years of treatments.  A diagnosis of neuroblastoma is a dark place and I needed that sliver of hope so, so badly.

When my grandson was diagnosed, he was immediately hospitalized and ended up staying for months.  The tumor was wrapped around his aorta and it was literally suffocating him. He had to have high doses of chemotherapy to quickly reduce the size of the tumor so it could be removed. We live in Virginia and had to watch everything unfold at a distance.  Beth Anne and her husband had to split their time between work, home and hospital.  Conor, because of his age, required someone to be with him at all times. I had to watch my daughter, her husband, and Conor’s ten year-old sister cope with their new and very challenging life dealing with everything you could throw at them. You made me feel so helpless.

I was deeply concerned about Conor surviving, while watching my pregnant daughter, and her family deal with the all the stress and sudden major changes you made to their lives.  After Conor’s surgery to remove his reduced tumor, I saw the stress first hand when Beth Anne’s sister and I went to help by taking overnight shifts watching Conor in the hospital for a few weeks.  We did 12 hour shifts overnight to make sure he was OK and did not pull his tubes or wires out during the night.

One night at about 3 AM in the PICU where the quiet time is punctuated mostly by various beeps and sounds from the equipment near the beds, I came to the realization of the brutal finality of a child’s death. I will never forget that night when, from down the hall, I heard a horrible sound of uncontrollable crying and sobbing.  I actually felt the pain and sorrow coming from the parents of a child who had just died of cancer.  Watching Conor’s struggle against you, and what I heard that night are embedded in my memory forever.

You probably haven’t noticed yet, but hopefully you will. Because of you and knowing how much you have affected my family and others you have touched, I retired. I found a purpose!  I found ways to make my retirement years productive.

I spend my time visiting Capitol Hill and using social media to help obtain support for increasing research to find effective, non-toxic therapies to improve the outcomes of the children you will attempt to meet in the future. I work in conjunction with thousands of my friends in the childhood, AYA cancer community to help make you a national priority.  Have you checked out some of the great stuff coming out of Washington lately?  We’re not where we want to be by a long shot, but we are making real progress.

There is one thing that would thrill me completely and that would be seeing you become listed next to polio as a disease that has been eradicated.  I so want to be around to wish you a warm, “Goodbye.”

Oh, by the way, Conor is fifteen now and you should see how that boy can surf, skateboard, mountain bike, and play guitar, all while making excellent grades in school.

Worst to you,

Joe

All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://elephantsandtea.org/contact/submissions/.