What About Now: Fighting Cancer in South Brunswick

In 2010, Sherrie and Mike Wells  Brady was diagnosed with the disease when he was just 13 months old.

Motivated by their grief, the Wells started the Hugs For Brady Foundation in hopes of raising awareness for and advancing the fight against pediatric cancer.

At the foundation's third annual Winter Gala held on Jan. 26, the foundation expected to donate $50,000 to help fund a new pediatric oncology/hematology Young Investigator’s program at the The Cancer Institute of New Jersey. 

The gala, held at the Heldrich Hotel in New Brunswick, featured the presentation of the Hugs for Brady Pediatric Cancer Humanitarian of the Year Award to Mary Gondek, owner of Confectionately Yours restaurant on Route 27 in Franklin Park, and the Dr. Randy Siegel Pediatric Cancer Humanitarian of the Year Award to Valerie McRae, M.D.

Below is the text of the remarkable and moving speech given at the event by Sherrie Wells:

Our cause here today is not so much about saving lives as it is about giving children the opportunity to live their lives.

I am forced, every day, to face the fact that I will never again see my son smile, or hear his laugh. He will never suffer the anxiety of asking a girl to the prom. I will never fight with him over his college applications.

I will never see the incredible man that I know he would have grown to be. Most importantly, though, I must live with the fact that my son was robbed of his life, his chance to love, his chance to see how beautiful the world is, to witness it with his own eyes.

Pediatric cancer may not be an epidemic, but its tragedy is felt like a plague. The reality is that thousands of children, innocent and beautiful, die, every year because no one has taken the time to figure out how to make it stop. Mothers, fathers and families, like my own, are shredded at their core, pressed with the knowledge that the world shows no mercy and that cancer does not discriminate.

The situation we are facing today, is grounded in the fact that people are treated as numbers. The National Cancer Institute allocates funds solely based on incidence rate and, in doing so, severely overlooks the specific need for research in the realm of childhood cancers.

I was compelled to start this organization because when I was told that my son was dying, I had a lot of questions. I pleaded with the doctors, ‘tell me where to go. Japan, Germany, Boston, just tell me where to go and I’ll go there. Tell me what to do and I’ll do it.’

My pleas were met with blank, quiet, uncertain faces. They told me it didn’t matter. They told me that it’s the same everywhere. They told me that there were no real answers. So I ask you, would you settle for that? Could you look into the eyes of your son or daughter, and tell them that they won’t be around for Christmas because no one will profit from saving them?

The truth is that there is such insufficient research because the relative incidence rate of childhood cancers promises no extra vacation homes for pharmaceutical executives. Since President Nixon signed the National Cancer Act in 1971 we have seen major improvements in the survival rates for childhood leukemia. Since 1971, however, efforts have plateaued.

Since 1980 only one new pediatric cancer drug has been approved by the FDA as compared to 50 new drugs approved for adult cancers [1]. The Journal of Clinical Oncology set out to investigate the disparity between the FDA’s approval ratings of adult cancer drugs and pediatric cancer drugs.

Ultimately, they concluded that “reasons for a lack of New Drug Application submissions for pediatric oncology include the small pediatric oncology market compared with the adult oncology market” [1] despite the fact that pediatric cancer remains the leading cause of death by disease in children [citation].

In 2012 the National Cancer Institute allocated just over 39 million dollars to what they have designated as childhood cancer. To most of us this will sound like a lot of money but, let’s put this number into perspective.

The allocations for pediatric leukemia place it at number 19 on the allocations list out of 45 total cancers. This is a major problem. Did you know that under the category of childhood cancer there are at least 13 sub categories, each which operates independently [citation]?

Childhood cancers manifest themselves as idiosyncratic entities, each one unique to its host, and unlike its adult counterpart. The combination of ALL and AML leukemia that my son suffered from became known to his doctors as Brady’s leukemia.

They had never seen anything quite like it before and probably never will. This will be the case for the near 13,000 children who will be diagnosed in 2013. The mere fact that federal allocations group childhood cancer under one blanket category is simply illogical. The variability of childhood cancers is nothing, if not a testament, to the necessity for research.

In just the past year, we, at Hugs for Brady, have established New Jersey’s first ever Pediatric Cancer Hematology/Oncology Young Investigator program, promoting special attention to understanding the nuances of pediatric cancer. We deliver flowers and toys regularly to six local hospitals. We have aided multiple afflicted families with their crippling healthcare expenses.

We have sponsored multiple blood, platelet, and marrow drives. We have continued our effort to provide wagons for the pediatric cancer wards, and we have so much left to do.

At Hugs for Brady we not only focus on the research and relief necessary to fight this relentless disease, but we also understand the importance of improving the quality of life of children currently suffering. We understand that until we have the support of all of you, and many more, that we must continue to fight and do what we can to enhance the lives of the children that we are all here to protect.

What I am asking of you today is about more than putting money in the jar. Today, I am asking you to step up and accept your moral obligation to extend our message beyond these walls.

It is our duty to speak up, to use our resources and our voices to communicate to the world that a life is worth investing in. It is our duty to be a voice for the powerless. I ask you today to become a champion for our cause, ask others to donate, and share our message.

When Brady was in the hospital he loved to venture outside and look at the flowers. He would sit in front of the Black-Eyed Susans and, smiling from ear to ear, pick them one at a time. As he picked the flowers he would name the person each one was for -- ‘mommy, daddy, nurse, grandma...’

This boy, barely able to walk, barely able to say his own name, would, with such genuine joy, spend his play-time finding ways to thank those who cared for him, the people he loved. Brady loved to make people smile. Brady loved to love.

It’s too late for my Brady. I can not save him.  I am forced to wake up every day knowing that my son died of a disease that is largely considered curable, but only with the right research.

I know why I am here today, but why are you here? I assume that you are all here because something about our cause awoke a part of you. Maybe you have even walked in my shoes. You knew that our cause was worth fighting for, and you knew, that you could help.  

Tonight is your opportunity to tell the world that we aren’t all selfish and greedy and that life, and love, weigh more than a full wallet.

In our petition for justice against this savage disease, the Hugs for Brady foundation adopted the “moral compass” of donation. The four points of the compass include blood, platelets, time, and money -- the four ways in which every person can help. In the hospital with my son, I met many families suffering like my own.

From this I learned that, when dealing with trauma, everyone makes decisions differently, everyone has a different moral compass, and no one can say that any one decision is more right than another. However, when it comes to taking action, the compass only points one way.

At the juncture of action and inaction, the righteous path is the one which asks something of yourself.  

Decide to make a difference today.

Decide to be an advocate for an afflicted child.

If not now, when? 

If not now, when? 

If not now, when?

Citations:

1.http://jco.ascopubs.org/content/21/6/1066.full

Click here to help the Hugs for Brady Foundation raise money for the fight against pediatric cancer.