I remember every detail of the day my daughter was diagnosed with brain cancer at nine months old. It was a perfect September Day without a cloud in the sky. I still remember the feeling of the breeze as we laid in the grass with Francesca and thinking “life can’t get any better than this.”
Like so many families here today, that day will be etched in my mind forever. It was on that day I entered a world I did not know. Where my life stood still, but all around it kept going on. It was on that day I learned firsthand about childhood cancer.
Every three minutes a new child gets diagnosed with cancer and a new family enters this world. Nationally, 1 in every 285 children get diagnosed with cancer, the number one disease-related killer of our kids.
What is childhood cancer?
Childhood cancer is waking up one morning not knowing your world is about to be shattered with a diagnosis. Childhood cancer is emergency surgeries, it is calls to loved ones to break the news of diagnosis to them. It is dropping in your entire life, your work, your social life, visit with friends and family to care for your kid.
Childhood cancer is the visits to oncologist, specialist, surgeons in the days following a diagnosis. It is a trip to and from the hospital every day. It is sitting by your child’s side as they struggle through the treatment. It is holding your children and loved ones as they struggle to understand what has happened to you and why life has pushed this terrible burden on you.
It is smiles and entertainment in the hospital making the best of what they’re is the world’s worst situation. It is sitting by your child’s side through a bad diagnosis and putting a strong face for them. It’s carrying your kid home in your arms on a long walk, because they’re not feeling well from treatment and just want to be held.
It’s the triumph of beating the disease, or the euphoria of a good scan. It’s a trip to physical therapy because childhood cancer doesn’t and when treatment is over it is lifelong. It is struggling to pay bills, moving away from family for treatment, and doing every single thing you would do to save your child’s life.
it is being with your child as they die and it is going on because you have no other choice.
My daughter had cancer. My daughter died of cancer, but her story is not done. She lives on in our efforts to fight pediatric cancer. She lives in the hope and joy she inspired in this world. And she lives on in my wife and I, in remembering her everyday and the lessons her life still continue to teach me.
When you lose a child, your life is never the same again. Never. Never the same. Never. We call it the dividing line in our life. I’m never going to be the same, and none of those people will be, either. When Francesca was diagnosed, and when she died, the outpouring of love and support was something I would have never imagined. I want to help anybody that I can because of what was given to me by other people.
Francesca was real and she was perfect.
Even though I’m in the midst of so much heartache, I am also filled with a lot of hope knowing advances are being made. Knowing that so many doctors and researchers are working so hard, even with the odds they face to create better outcomes for childhood with cancer. It is knowing families who have kept their children alive and had them thrive even after several relapses through sheer will and determination — even when doctors told them there was nothing they could and even when the odds seem long and hard.
It is the spirit I see here today of families of children. Those who have survived, those who have passed, and those still fighting are coming together to fight for more funding, better treatments, and letting the world know that childhood cancer is real and not some far off suffering to be pushed away.
It’s watching families turn their greatest heartbreak into hope. Fighting in their child’s memory so that other families don’t have to go through what they went through.
I’m reminded of the parents of Gabriella Miller, who died of DIPG and who spoke at this very same event eight years ago. In her speech, Gabriella said, “if not now then when.” In the year after her death, Congress passed the Gabriella Miller Act to fund childhood cancer research at the National Institute of Health. Today, her mom, Ellyn, is fighting to pass another bill in Gabriella’s honor to fight childhood cancer and fund research in potentially hundreds of millions of dollars.
I think about Nancy Goodman, whose son Jacob passed away in 2009 at age ten. Nancy helped pass the Creating Hope and Race for Children Act to incentivize the development of drugs for kids with cancer. And she’s working on another bill, the Give Kids A Chance Act, to do the same by requiring more pediatric studies.
I think about how even though it is hard for families like mine who have lost a child to remember, incredible advances have been made in pediatric cancer research in the last few decades. How the type of cancer Francesca had was only classified in the 1990s and was nearly universally fatal and how incredible oncologists, including our’s at Dana Farber, helped develop a protocol which has allowed ⅓ of kids to survive. How they are everyday working on new clinical trials, some of which are showing such promise in preventing relapse.. And how 1.4 million dollars we’ve raised for Dana Farber will make sure this important and underfunded work continues.
But I also think about how far we have to go. We still have childhood cancers that are universally fatal upon diagnosis. That’s an injustice. That’s unfair. And it is up to us to change it.
Improving outcomes won’t be simple.
Sadly, given the small market of patients, it’s unlikely that a profit-driven industry will develop a miracle drug for pediatric brain cancers. And to date there has never been a drug approved by pediatric brain cancer. Ever.
Instead, fixing the world for our children will require more of everything: more funding from the National Cancer Institute, the Defense Department’s Peer Reviewed Cancer Research Program and the Rare Cancers Research Program; stronger requirements for the pharmaceutical industry to share drugs with pediatric oncologists; and improved data-sharing.
Why must we do this?
The average child who dies of cancer will lose 70 years of life. That’s 70 years of life my daughter will not get to live. Globally, that’s millions of years we lose each year when children die of cancer. We are losing generations of childhood and we are not doing enough.
For those whose children do survive, immediate and lifelong challenges related to their cancer and treatments are often a continuing burden. And families will often then face tens of thousands of dollars in out-of-pocket medical costs related to physical, speech and emotional therapy over the years following treatment.
Curing childhood cancer doesn’t just mean survivorship, but developing less toxic treatments. And there is still so much to be done.
When Beans died, I received a kind message from a total stranger I want to share with you.
“Her life is not going to be measured in time, but instead for the love you feel for her. You have the gift of knowing a love that steals your heart.”
Be kind, be empathetic. I will never be the person I was before, but I am accepting who I am. Treat others with respect, you never know what they are going through. That’s what Beans taught me. She continues to teach me. Beans we will never forget you and we will never give up this fight for you and every child and family.
