GrandParentsMotivated_edited-1I wish I never heard of The Coalition Against Childhood Cancer (CAC2) or of its members I know by their first names and their home States – Joe (Virginia), Tom (Pennsylvania) and Donna (Virginia).  I wish I only knew Michael McCaul (Rep., Texas) as the Congressman who succeeded Rep. Peter King as Chair cac2_PMScbof the House of Representatives Homeland Security Committee and my only exposure to Chris Van Hollen (Dem., Maryland) was on the Sunday morning talk shows as he espouses the position of the Democrats on a myriad of different issues.  And lastly, I wish I only know Dr. Richard O’Reilly as my former law partner’s brother.

Congressman McCaul and Max speaking at the Congressional Caucus

Congressman McCaul and Max speaking at the Congressional Caucus

As a result of the diagnosis on May 2, 2007, of my grandson Max of stage 4, B – Cell Lymphoma, I became what is known as a pediatric cancer advocate – having formed with my son, David, and his wife, Annemarie, The Max Cure Foundation, Inc., a 501 ( c ) ( 3 ) pediatric cancer foundation (MCF). MCF is a member of CAC2, a group of over 50 pediatric cancer foundations and 15 pediatric cancer advocates, whose mission is to advance the cause of pediatric cancers through collaboration among the

Rep. Mike McCaul and Rep. Chris Van Hollen

Rep. Mike McCaul and Rep. Chris Van Hollen

members; Mike McCaul and Chris Van Hollen are co-chairs of the bipartisan Congressional Childhood Cancer Caucus, a caucus MCF has supported over the last 3 years; Joe, Tom and Donna, like me, are grandparents of children who had been diagnosed with cancer, Joe’s grandson and my grandson being considered survivors and the grandchildren of Tom and Donna having passed away from this horrible disease – all four of us being actively involved in CAC2.

Dr.Richard O'Reilly

Dr.Richard O’Reilly

Finally, my wish that I did not know Richard O’Reilly as Chair of the Pediatric Cancer Unit at Memorial Sloan-Kettering Cancer Center in New York City but only as the brother of John O’Reilly, my former law partner, leads me to mixed emotions –  it was through the efforts of Dr. O’Reilly and his colleagues that Max is a survivor and hence, I thank G_d that I called Dr. O’Reilly when we suspected Max might have cancer (it was just before his fourth birthday – he fell and hurt his arm, leading to an x-ray that was very suspicious and turned out to show cancerous tumors throughout the bone of his right arm and ultimately, also in his left knee) but again, wish I did not have to make that call.

I attended a meeting in Washington, D.C., of CAC2 members in September, 2013, and noticed that most of those in attendance appeared to be of the age of my son and daughter in law – in their 40’s – with some in their 50’s.  They, for the most part, were parents of a child with cancer – most of whom passed away from the disease, with their parents not wanting their child’s passing to be without meaning.  They formed pediatric cancer CAC2-meeting_061913-900foundations or became pediatric cancer advocates.  They were committed.  The woman sitting to my left at the meeting showed me a photo of a beautiful 12 year old girl named Rachel and next to that photo was a similar sized photo of Rachel’s tombstone.  I heard story after story of the nightmares each of these parents went through watching their children, who should otherwise have been enjoying their childhood, fight for their lives, most of whom lost their battle.

Donna, Richard, Joe

Donna, Richard, Joe

Like me, I also saw others at the meeting who appeared to be older and learned, like me, they were grandparents of children with cancer – that is how I first met Joe, Tom and Donna.  We bonded as only those in the winter of their lives could under the circumstances and like the black soldiers who fought so valiantly and heroically in WW II as part of the Tuskegee Airmen, knew we were different from the rest of the group comprising CAC2.  The latter were primarily the parents of children with cancer – we were “only” the grandparents, the forgotten few, the ones who ought to have been enjoying their latter years but instead met face to face with the horror of cancer in their grandchildren and the terror and sadness confronting their children, parents of the youngsters with cancer.

That is the genesis of what Joe, Tom, Donna and I call “Grandparents In Action” (GIA), whose members shall exclusively be grandparents of children with cancer.  Our goal is to be a support group for grandparents, issuing blogs for and from grandparents and at the same time, solicit funds solely from grandparents generally (not only those directly affected by pediatric cancer – but from all grandparents) to help support a pediatric cancer charity to be selected by the four founding members Joe, Tom, Donna and me) – but not being either The Max Cure Foundation or The Nicholas Connor Institute (TNCI), my and Joe’s foundations, respectively.

GIALOGOBlogJoe, one of the grandparents I met at CAC2, had prepared the logo for GIA which showed what appeared to be an elderly couple, sitting on a bench, looking off into space.  To me, that couple symbolized the grandparents of a child diagnosed with a form of cancer. They are contemplating how their lives and those of their family have changed forever, knowing some children survive and some pass on and wondering which group their grandchild will fall into. The mantra that children are not supposed to die before their parents is even more heart-rendering when the grandparents are still alive, watching their grandchildren go through the treatments for their cancer, not knowing whether they will win the battle.  I remember the grandmother who spoke on Capitol Hill at the 2011 cocktail reception on the eve of the CongressPassesCHA-6-26-2012-Logo2011 September symposium of The Congressional Childhood Cancer Caucus in support  of the Creating Hope Act.  The Act, signed into law by President Obama in July, 2012, is intended to incentivize pharmaceutical companies to develop drugs for “rare children’s diseases” such as childhood cancers. The grandmother at the symposium was told there were no drugs to treat her granddaughter but the doctors would attempt to make her as comfortable as possible until she passed on. It was riveting to me to hear her story as she led us from the diagnosis of her granddaughter’s cancer to her death.  When pondering the obstacles that confront grandparents of children with cancer, seeing not only their grandchildren facing potential death and in some cases, actually dying,  but also seeing the toll it was taking on their children (parents of the children with cancer) and their other grandchildren (siblings and cousins of the child with cancer), leads, in my view, to the inescapable conclusion that the GIA logo is “spot on”.  Those in the logo depict folks who are “concerned, scared and motivated” – motivated to make a difference in the area of pediatric cancer as they contemplate their remaining years; concerned for other grandparents that will face the horrors that they are confronting; and scared that the Government (NIH and NCI), American Cancer Society, and the public generally will continue to be focusing more on adult cancers, inspired by the pink ribbon, without giving a darn for the most innocent among us, our children and grandchildren, giving them, for the most part, only lip service and “crumbs.”  The Congressional Childhood Cancer Caucus is intended to give the children with cancer a voice on Capitol Hill.  GIA is intended to take that one step further and give the children, through their grandparents, not only a voice – but a commitment to make things right!

Author: Richard Plotkin

This entry was posted in Childhood Cancer, Grandchildren, Grandparents, Pediatric Cancer, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

2 Responses to Motivated

  1. Marica Casey says:

    My grandson Kyle Dean Smith was diagnosed with Acute Myeloid Monocystic Leukemia/flt3 gene mutation on January 11, 2009. He underwent a boine marrow transplant on May12th 2009. After many bone marrow drives in his honor signed more than 500 onto the donor list. In July of 2010 he was also diagnosed with Acute Lymphoblastic Leukemia caused by his treatments and died on Aug1, 2010. I promised him I would continue s battle to illiminate childhood cancer deaths. That is why I am here. I foloow many many children fighting some form of cancer and I watch them waste away and die slow torturous deaths. I want to do something. I want to keep my promise to Kyle.

  2. Pingback: We’re in this together | Grandparents In Action

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