I Spy . . . Hope

Last week I was humbled to be one of the keynote speakers at Pediatrics 2040 (Peds2040). The event was the annual meeting of the international Society for Pediatric Innovation or iSPI. Below is the transcript from my presentation. It provides the culmination of my journey as well as Gold In September’s vision as we continue to innovate, collaborate, and grow GOLDEN awareness and funding so that every child, everywhere survives cancer.

iSPI: International Society for Pediatric Innovation Keynote Address

I have questioned why I would be asked to address such an esteemed group of MDs, PhDs, executives, and experts in your respective fields. Should I show you charts and graphs? Statistics and percentages? No.

I have been asked to speak to all of you because there are people and personal stories behind those charts, graphs, statistics, and percentages . . . I am one of those people. The rare disease of childhood cancer has impacted my family in more ways than I could have ever imagined.

You are all industry experts in your chosen fields…I, too, am an expert, though not entirely by choice.

“Your child has cancer.” Four words that change lives in an instant…and instantaneously change how life is lived each and every day moving forward.

As a young college grad, I couldn’t imagine anything better than putting my public relations and journalism skills to use working for the American Cancer Society. I was confident about my chosen path and purpose in the world of philanthropy. Having watched my mother and aunt both struggle with breast cancer, I felt I had more than enough personal commitment to the cause to truly make an impact.

It was with keen interest and enthusiasm that as my career evolved so did my desire to work specifically in the area of funding cancer research. Let me tell you, no one was more surprised than me to discover that reading the details of a research proposal or clinical trial project would be something I not only understood but enjoyed!

The reality is that it was an easy topic to discuss. Everyone is touched by cancer. Sadly, this is a statistic that we know all too well: 1 in 2 women, 1 in 3 men.

But the statistic we do not often hear is the one about the children. How many children? How many young lives lost, how many futures changed?

I was particularly humbled by donors wanting to remember their daughter who died very young by supporting a researcher and her work on a project for childhood cancer so that other families did not feel the devastation they felt missing their child.

As the mother of the most perfect twins, Jack and Annie, I couldn’t imagine the grief these loving parents felt each and every day in the 30+ years since losing their beloved daughter. Their perseverance in the face of powerful devastation left me shaking my head thinking I could never survive such a loss.

My work with these particular donors was going to culminate on September 23, 2005 at an annual fundraising event. I was asked to address the crowd gathered about the research project that would be funded and the wonderful work that would now be done because of their generosity. The highlight of the event was my great privilege to introduce the donors to the researcher who had flown in to thank them.

Instead, on that very day, I found myself standing in the ER being told that after a week of flu-like symptoms, my joyful, wonderful, perfect son just a couple weeks shy of turning 4 had a Stage IV metastatic cancer called neuroblastoma.

And just like that, my family became part of a statistic.

Thus began my family’s journey into the true depths of childhood cancer and the research needed. My feel-good philanthropic career goals quickly became very personal, frightening goals about the life of my own child. Confident in our ability beat the odds with knowledge and know-how, my husband John and I set out with Jack around the country for treatments, sought the insight and advice of the best doctors, and remained full of love and hope for both Jack and Annie.

We met children and families from around the world in the playroom of Memorial Sloan-Kettering enduring the same journey with whom we shared laughter and tears, joy and sadness. As parents, we quickly bonded and banded together to share information, resources, and support. We also worked together to create awareness and generate funds for new clinical trials.

I remember well a group of dads who voluntarily rode their bikes across America – it was called The Loneliest Road. Think about that for a minute – parents with kids battling cancer feeling the need to ride their bikes across the country to raise funds and awareness while their children are in the hospital or, worse, at home dying. Is this the best we can do? Make parents bike across America and organize fundraisers in hopes of saving their children? Until there are better solutions, you can bet we will do whatever it takes to save our children.

Our personal efforts to host and support fundraising efforts to fund new treatments bought Jack time, bought us time as a family…in fact, it gave us precious years. When Jack passed the 5-year mark from diagnosis, he was considered a survivor though we were multiple relapses down the road worried that we were running out of options. We just hoped we could keep kicking the can down the road, closer to a cure. And it was a lonely road.

More than 80% of children diagnosed with cancer survive 5 years. A great statistic…right? No.

Is 5 years enough when a child is diagnosed at 4? 10? 16? In reality, less than a handful of the major types of childhood cancer have a true positive survival rate.

Childhood cancer is the leading cause of death by disease of children in the U.S.; in fact, it accounts for more deaths than all other childhood diseases combined. And, as you all know, it is not one disease; there are more than a dozen types and hundreds of subtypes each as unique as the child diagnosed.

Jack died just before his 11^th birthday after 6 years and 11 months of battling cancer. My beloved Jack’s death on August 27, 2012 not only took years from his life, the disease took years of hope and happiness from all of us who loved him. Having a clever mind, a positive attitude, and an extraordinarily happy disposition, Jack, in his lifetime, had already left an imprint on all who knew him. I can only imagine his impacts after 70 more years. But all that beauty was taken away and my heart will never recover; honestly, I don’t want it to because that fuels me and has changed me. And because of that I am here and I will make a change for others.

Less than 4% of the NCI’s budget goes to all pediatric cancers combined and only 4 drugs have been approved specifically for childhood cancer. We all know childhood cancers behave differently, just like children behave differently than adults. If we don’t expect children to act like adults, we can’t expect their cancers to be any different.

Children are our most valuable natural resource. They are novel, they are here to help us innovate, create, design, advance and transform our world. As a parent, your child is your heart and your home. The depths and distance to which you will go to find a cure are endless. I understand why people feel the need to support local endeavors, local hospitals, and local projects, and I certainly don’t discourage this; however, children of this world battling cancer should all be viewed as local. They are our responsibility, they are our future, they are our hope for tomorrow.

Regardless of where a child is from, each of the children fighting cancer is the collective responsibility of our world . . . they are all ‘local’ to those who love and care for them and the community that supports them because regardless of where a child receives treatment, each child deserves the opportunity to return home. We have to change the use of ‘local’ from using it to describe geography, tumor containment, or even the classification or name of particular cancers. We have to get beyond the restricted ‘local’ thinking. Do we want to be local or do we want to be global?

Though I have questioned and agonized wondering what I could have done differently to protect Jack, childhood cancer cannot be prevented because the causes of most childhood cancers are unknown. But I expect some of you in this room are working on this very topic as well as opportunities for early detection.

And what is to come of the survivors? Nearly all childhood cancer survivors will suffer long-term side effects as a result of the treatment that cured them. Some of these side effects are debilitating and life-threatening. Don’t believe me, let me tell you about my husband John, who was diagnosed with liposarcoma in his early 20s, firmly placing him in the Adolescent Young Adult (AYA) cancer category.

Young and healthy, his life was saved due to harsh chemotherapy and massive doses of inter-operative radiation therapy with the caveat that there were unknown side effects likely down the road. He suffered the destructive aftermath of this devastating disease as a college student, as a parent, and as an adult survivor for whom there were no standards of care. John passed away in March 2016 his heart and mind strong, his body destroyed by radiation.

It isn’t cancer that directly took the life of John; rather, his death was a result of the treatments he received for his own cancer diagnosis…more than 20 years earlier. He struggled with these side effects for the second half of his life until, at age 47, his cure lead to his death.

Death should not be the side effect of a cure.

Jack and John are both considered survivors…this is not success.

This cause isn’t taken up by good citizens, it is burdened on the families fighting. As my daughter Annie said during an interview once and I quote, ‘We can’t win the fight against this awful disease with only the people trying to fight it, that’s like trying to win a war with only the wounded.’ We need the healthy and strong. We need us.

Side effects of cancer are not limited to the patient. There is grief, anxiety, depression, anger, trauma, PTSD and so many other emotions. Mental health is sacrificed for the survivors, caregivers, and devastated families.

I am a widow. This is a side effect of cancer. I am a grieving mother with grieving children. Another side effect of cancer.

John and Jack’s cancers were completely unrelated, which means our family was struck by lightning…twice. When people hear our story, they are in disbelief and shock. How can so much tragedy happen to one family? Let me tell you, I ask myself this same question each and every day.

I was 6 months pregnant with our long-awaited 3^rd child when Jack passed away. There are so many things I wish I could change, but the one thing I wish I had was a picture of all three of my children. Alas, I do not and my little 6 ½-year-old Tommy can only know his brother (and now father) by picture and by the pictures I paint for him from my memories and heart. What gives me great hope is to look out at the people in this room and know that by coming together, we can and we will make a difference.

Gold In September…G for gold and 9 for the 9^th month of September (the nationally recognized month) for childhood cancer. I didn’t choose gold, I didn’t choose September, and I surely didn’t choose the diagnosis…but I choose to fight. I choose to fight though I cannot save my own child, but because I can save another parent from feeling hopeless and, instead, assure them there is great and abundant hope.

Everything I thought I knew about cancer childhood cancer in 2005 cannot compare to what I know now…older, wiser, powered by years of fighting cancer and funding research in search of cures.

Last year, I read an article about a woman who died at 92. (I hope I can be so fortunate to live so long!) I will never forget the article because it resonated so deeply with my heart. This mother spoke openly for decades about not being afraid to die because she had already faced a death more painful than her own…the death of her 3-year-old child.

It was 1953 and a young mom took her daughter to the doctor. The complaint was fatigue; the diagnosis was leukemia; and the prescription was to go home, love her, and let her die. And while the family did not go home and rather fought and traveled the country in search of a cure, seven months later her daughter did die leaving a weight of grief and fresh tears she would carry with her for the next 65 years. That mom…was Barbara Bush.

This has nothing to do with politics, just the story of another mom. Because that mom is also me. I had nearly seven years instead of seven months, but in August of 2012, I was also told that it was time to go home. In fact, exactly seven years ago today, the only medicine I was giving my son Jack was love. We were at home on hospice, simply hoping for one more day.

We have come a wonderfully long way since 1953 or even 2012, but we haven’t come far enough. As I was compiling my notes for this presentation, I received a text from another parent seeking my advice for their multiple-relapsed child. With three hospitals and doctors weighing in, she came to me asking for my insights, my thoughts, my recommendations for her own sweet boy.

The realities of the statement I just made should have us all shaking our heads. I know I am. Who am I to provide advice on a topic of this magnitude? But all this mom wants is to avoid the day when they are told there is nothing more to do than go home. While there have been amazing advancements in technology, do not underestimate the power of human connection to play an important role in medicine, in development, in hope.

I wouldn’t be here if I didn’t think we had an opportunity to make a difference. I do believe that cures are possible. We are here because of innovation. But when I looked up synonyms for innovation, I was struck that one of the words was: mutation, a word used frequently when talking about cancer.

Cancer has already innovated which means we need to work harder, smarter, and collaboratively to get ahead. The moment a child is diagnosed with cancer, a mutation has already occurred and we are playing defense. I want to stand on offense.

Science is poised and technology unites all of us in an instant. This is why we are all here. Precision medicine requires precision funding, precision collaboration, precision strategy, and precision belief that we can create global change.

There is often talk of risk and not wanting to put children at risk with new therapies or treatments. Let me tell you, parents are not risk-averse. The alternative we have with childhood cancer is unacceptable. If a child is facing possible death, there is no such thing as too much risk to save a life.

There IS hope. There IS help. We are all here in this room. But right now, there is not enough hope and help to go around. Another child, another mother, another family will experience the pain we have experienced (and continue to experience.)

But today, everyone here in this room has an opportunity to grow that hope, to increase the help. But we can’t do it alone. Together, with our collective voices, resources, and commitment, we can be the hope and the help for those that follow.

We as humans are novel and the most novel of us all…children. Their light of hope, enthusiasm, and knowledge burns bright and it is our responsibility to make sure it isn’t dimmed too soon. G9 isn’t about my family, it isn’t about one hospital or one trial, it’s about a collective obligation and determination.

Childhood cancer is considered a rare disease, though it is the leading cause of death by disease in children. How can this be considered rare?

We can call a disease rare or we can do what is rarely done and create massive, sweeping, courageous change. I would like to make childhood cancer something parents rarely have to think about because of novel therapies funded by novel philanthropy fueled by novel medicine. That is why I am here.

If I leave you with anything, I leave you with this: diseases like childhood cancer may be rare, but the hope that exists within each and every patient and family fighting is never rare.

If I can have hope, anyone can have hope. It’s our collective job to innovate and collaborate so there is enough to go around…to ensure the road is not lonely and that kids can go home to survive and thrive.