At a meeting in 2013 of the Coalition Against Childhood Cancer (CAC2), it was evident to me that most of those attending who were directly affected by childhood cancer were parents of children with cancer. As one looked around the room, the four of us (Donna, Tom, Joe and me) stood out, having nothing in common other than we appeared to be older than others in the room, with graying hair, a few wrinkles and a wisdom that only comes from years of experience. We came from Alabama, Virginia, Pennsylvania and New Jersey, being two Corporate Executives, a U. S. Civil Servant, and an Attorney, all retired and all knowing the emotional pain that comes from having both grandchildren with cancer and children undergoing the stress of having been told, “Your child has cancer.”
It has been over two years since Joe, Tom, Donna and I, all grandparents of children with cancer, decided to form Grandparents In Action (GIA), the initial posting having been done on January 24, 2014. I attempted to memorialize our motivation in an initial blog that appeared in that first posting, Motivated. Joe and I are grandparents of pediatric cancer survivors, Conor (Joe) and Max (me). Max was diagnosed on the eve of his fourth birthday in May, 2007. He is now 12 years old, a 9-year pediatric cancer survivor. Conor was diagnosed in 2006 and is now eleven, a ten year childhood cancer survivor. Joe and I, grandparents of pediatric cancer survivors, do not pretend to equate our experiences with those of Donna and Tom whose grandchildren did not survive. The intent of GIA though is to let all grandparents know that they are not the forgotten few – we are in this together.
In July, 2009 at age 6, Max had concluded his two plus years of active cancer treatment. He soon thereafter started first grade at the Dalton School, a private school in Manhattan. Every week, one hour was devoted to reading with an adult. Adults were invited to attend the class and to bring reading material for themselves while the children read books made available to the class. I was delighted when I was “assigned” by Max’s parents the one hour to spend with Max in class during the weekly reading period. I noticed immediately that Max’s classmates were reading what was known as chapter books while the books Max selected to read were picture books. I clearly recall Max “reading” (it was evident he memorized the words), “The duck in the truck got stuck in the muck” and so on. He was clearly substantially behind the other kids in the class who were light years ahead of Max in reading. After spending time on the internet, I concluded that Max had what is known as “chemo brain”, a diagnosis that was not uncommon to those that had concluded a lengthy period of chemotherapy. I read all I could about “chemo brain” and its lasting effects. Max was not yet a 5-year pediatric cancer survivor which I understood was an important benchmark. That Max would grow up to be behind his peers in educational prowess such as with his reading skills was not of great concern. Nonetheless, the family was concerned and on the recommendation of the treating hospital, brought Max to a pediatric neuropsychologist who, after examining and testing Max, concluded that he did not have chemo brain but rather, while the other kids were learning to read, Max was fighting for his life, undergoing treatment for his cancer, reading not being a top priority. It is now six years later, Max, in his last report card (he is in the 7th grade), received all “A’s”. And as to his reading skills, he is a voracious reader, having completed 91 books since September 2015, substantially more than any other children in his class. Moreover, as he continues to grow (he is one of the tallest kids in his class) and is not showing any of the physical side effects that some pediatric cancer survivors experience, he more than holds his own in sports such as football, basketball and baseball. He continues to be my hero!
As I write this blog, I also recall another incident involving Max while at Dalton in the second grade. A teacher in the school had died of breast cancer and being the progressive school it is, Max’s teacher asked the class if anyone knew what cancer was (Max’s hair had grown back – the teacher knew he had cancer and was curious if Max would raise his hand). Max did, in fact, raise his hand and according to the teacher, told the class he had cancer, that he had a “boo boo” on his arm – he had B Cell Lymphoma in the bone – that he was treated at the hospital for a long time and that he beat the disease. A little boy asked Max if he lost his hair because of the cancer. Max responded, “No, I lost my hair because of the treatment for the cancer.” How quickly kids with cancer grow up! The teacher told Max’s parents it was like an adult was explaining to the class what cancer is – it brought the teacher to tears. As I said, he is my hero.
Whenever I am told of the impact on parents who have a child with cancer, I typically respond, “Do not leave out the grandparents who suffer not only for the cancer in their grandchildren, but also for the pain being experienced by their children, the parents of the kids with cancer.”
Author: Richard Plotkin
Editor’s Note: Richard is one of four co-founders of Grandparents In Action. It is an advocacy organization for Childhood Cancer made up of grandparents whose grandchild was affected by cancer. The organization is now two years old and has over 850 members. Here are other recent posts by other co-founders:
Pictured below are the original Grandparents in Action at the White House Childhood Cancer Summit. Starting at left, Joe Baber, Richard Plotkin, Donna Carmical, Tom Pilko