Quiet Heroes Talk

Ruth I. Hoffman MPH

I am honored to be among the greatest of women – women who have lovingly carried their children in their arms, bathed them in their love, and surrounded them with hope while their little bodies fought against the cruelest of all diseases - cancer.  I want to thank each of you who are mothers of children with cancer - as you truly are the quiet heroes in your children’s lives.

What is a ‘hero?’ Wikipedia describes a hero as someone who protects, or defends … a guardian who in the face of danger and adversity; or from a position of weakness displays courage, and the will for self-sacrifice, for some greater good.

As women and mothers of children with cancer we were put in the position of ‘protecting’ our children from the ravages of cancer’ but we had to do so by offering them up to the ravages of chemotherapy, radiotherapy, surgery, blood transfusions, antibiotics, anti-fungals, and all of the associated side effects of current toxic treatments.

We ‘defended’ them against ridicule, ignorance, and misunderstanding but had to do so while watching them lose their hair, sometimes their limbs, sometimes their memory, and dignity.

We ‘displayed courage’ to give them hope at times when we felt we were crumbling under the weight of such an enormous burden ourselves.  Most of us were relatively young women when we were introduced into this world of cancer with our children.  We were in a position of weakness as this was a new world to us – one which we knew nothing about but had to learn about quickly.  We did this for the greater good of our children and our families.  We had to – because we were and are our children’s quiet heroes on their cancer journey – we are their mom.

Twenty-two years ago, I too started on this journey with my daughter.  It was 1987 and Naomi had just turned 7.  She had been sick for months and weighed a mere 32 pounds.  Her pediatrician said that she had the flu, a bug bite, an on-going ear infection, and then switched the blame to me – I was simply a neurotic mother and I was making her sick.  In March of that year I actually asked him if she might have leukemia.  … My brother had recently lost his 6 year old daughter to cystic fibrosis so his response was that it would be statistically impossible for one family to have a child with CF and a child with cancer.  I acquiesced quietly to his ‘wisdom’ while 3 more months passed with my daughter’s health deteriorating in front of my eyes. My daughter was finding it increasingly difficult to walk.  Her friends were helping her step down off of the school bus.  Her teachers commented on her being unable to participate and keep up with the rest of the kids.  Then I received that dreaded call from the school – the call that every parent fears.  It was about Naomi.  This time they didn’t say that she was ok.  She had collapsed in class.  She was laying on a gym mat, she had little red marks covering her legs, she was having difficulty breathing, and simply was unable to move.

Naomi was taken to the Children’s hospital and we quickly learned that Naomi had cancer, but doctors were unable to give us a definitive diagnosis. Bone scans revealed massive up-taking of dye in her legs, ribs and jaw but her bone marrow was fibrotic so they were unable to get a bone marrow aspirate.  After an additional agonizing two weeks of testing and waiting for results, I was told that my precious little girl had acute myelogenous leukemia, M5 – a particularly nasty and resistant type of AML.  I knew nothing about AML.  I quietly listened on the cancer ward as other parents around me whispered that my child had the ‘bad leukemia.’  Upon learning this, like many of you, my first question was “is she going to die?’ I’ll never forget the answer; “Not today, the oncologist replied.”  I knew what she meant immediately.  This was going to be an incredibly difficult battle and the odds were against her surviving. It was 1987 and few children with AML survived then.

At the time of Naomi’s diagnosis I had a 9 year old son, an 18 month old son, and I was 5 months pregnant with twin boys. We were given several optional treatment paths to choose from: 1/ not treat and try to keep her as comfortable as possible, for as long as possible: 2/ give her chemotherapy and keep her alive for a few more months or 3/ give her a bone marrow transplant – a procedure that was new and highly experimental in the mid 80s.  After hours of consultations and consideration my husband and I actually decided to not put her through such agonizing treatments and decided to not treat and to keep her comfortable for as long as possible. We had lost hope.

Martin Luther King Jr. once said: “If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all."

I had lost that.  I had lost the courage that is required to be a hero for my little girl.  For a brief period of time, I lost the vitality to keep her life moving, lost the courage to go on in spite of it all. Then, from some still unknown quiet hero, I was given a Reader’s Digest Story.  It was left at the front door of my home while I was at the hospital with Naomi. It was a story of a survivor – a survivor of cancer – a survivor of leukemia – a story of a 20 year old young woman who underwent a bone marrow transplant, with her brother as her donor – a story of a young woman whose name was unbelievably … Naomi.

I never found out who left that Reader’s Digest for me but that individual changed the course of both my daughter’s life and my life and the lives of so many people since then.  That unknown individual gave me back the hope that I had lost.  They gave me the courage to keep on going.  Most importantly, they taught me to believe in those serendipitous moments when ‘doors’ are opened unexpectedly and with faith you walk through them, and by doing so, life is changed in some significant way.

So, Naomi underwent a BMT, with her older brother Nathan as her donor.  She underwent induction chemotherapy – 5 days on (24 hours/day), 3 weeks off, 5 days on again for 4 long months.  She then received 1200 rads of total body radiation, and high dose cyclophosphamide in preparation for her transplant.  She vomited every 5 minutes for days.  The radiation burned her skin.  Even her fingernails had radiation marks.  This was the mid 80’s - before effective anti-emetics, and before Emla cream—the physical pain was often agonizing.  The emotional pain because of isolation added to the agony.  Naomi lived in a complete bubble environment – a 10X10 foot room with a single bed and a commode chair being the only furniture. Her feet were not allowed to touch the floor. Worse yet - I was unable to touch her. I was double gowned, masked and gloved for 6 months yet unable to even touch my little girl regardless of the physical or emotional pain she was enduring.  We quietly gathered strength from each other.  We made this pact that ‘whenever one of us was down, the other one promised not to be, and to lift the other person up.’  It worked.  We both endured being isolated from the outside world.  Even the newborn twins who were born 6 weeks prior to Naomi’s transplant were excluded from our lives during that time.

Naomi survived her cancer.  She grew up.  She graduated from high school and college, fell in love and was married a few years ago.  She graciously endured all of the physical late-effects from her treatment as a little girl which included heart damage, cataracts, and endocrine dysfunction.  She quietly accepted the news from her oncologist that she would be sterile.  We endured the emotional heartaches of her father abandoning the family after the transplant and the breakup of our family.  Naomi was happy to be alive.  I was grateful for her life and our love for each other continued to remain strong.  We were each other’s soul-mate.

Then in November 2004, it was Naomi who called me.  My second marriage had left us in different countries.  She was in Canada and I was here in the US.  She asked me if anyone was there with me.  I instantly knew that something was very, very wrong.  Stoically, Naomi told me that she had a second cancer battle to face.  The radiation that had saved her life as a little girl was now the direct cause of another cancer.  I felt betrayed – betrayed by the hope that I had believed in, a hope that I believed had completely cured my little girl.  I flew to Canada and a few days before her treatment I walked in upon Naomi sobbing in her bedroom.  I immediately assured her that this cancer wasn’t like the first one.  This one had a high survival rate.  Treatment would be short.  She wouldn’t lose her hair.  Naomi’s response still echoes in my heart today.  She said “I know that mom, but when I was a little girl, YOU carried me in your arms, you bathed me in your love, and you surrounded me with hope.  I was a child and you were my hero.  Now I am an adult and now I have to do this for myself.”  I learned then of the true role that I had as a mother to my daughter as she battled cancer as a child.  I truly understood that day how vital it was to her survival that I was her quiet hero.  I can’t impress upon you enough how great that role is for each of you as mothers.  You are, and you always will be ‘the wind beneath your child’s wings.’  You always will be their quiet hero.  I believe that there is no greater role that any mother could ever have for their child.

I learned another thing that day that.  I learned that life is 10% what happens to us and 90% how we react to it.  I was reminded of the serendipitous event that led to Naomi’s transplant in the first place - that Reader’s Digest book that led to her survival … and it was that reminder that made me realize that I needed to be open to those serendipitous opportunities which would expand ‘the greater good’ beyond my daughter’s second battle to a larger battle – the need to change the way we continue to treat children with cancer.

Each year in the US, approximately 13,000 children between the ages of birth to 19 are diagnosed with this dreaded disease.  Babies are born with brain tumors, toddlers learn to walk holding on to an IV pole while it pumps their little bodies full of chemotherapy, children face the possibility of dying instead of starting kindergarten, and teens may never know if they will ever experience their first date and first kiss.  This is a disease that at this point in time cannot benefit from cancer screening, or cancer prevention.  Our children did not do anything that resulted in them being diagnosed with this life-threatening illness.

While information out of the National Cancer Institute and the American Cancer Society has shown that the survival rates for adult cancers continue to improve, I want to emphasize, that the survival rate for childhood cancer has not changed in the last decade!  Cancer continues to be the number one disease killer of our nation’s children and progress towards cures has reached a plateau.

On the other hand, scientific technology has advanced at an astounding rate, enabling researchers to learn about even the smallest aspects of disease at the molecular level.  This research has led to new types of ‘smart drugs’ to treat many types of adult cancers.  Sadly, there has been just one new drug – another standard chemotherapy drug approved to treat childhood cancer in the last decade.  Current treatments were developed 20 to 30 years ago.  They continue to offer little hope for too many children with cancer.  A child diagnosed with a DIPG tumor has no possibility for cure in spite of intensive chemotherapy, radiation and high steroid dose treatment.  Most will die within 9 months of diagnosis.

Children who do survive cancer face life-long late effects as a result of current toxic treatments.  Two thirds of childhood cancer survivors will face chronic health conditions, one third of which are classified as moderate to severe. Some childhood cancer survivors like Naomi endure second cancers that were directly caused by their original cancer treatment.  We must not let this trend continue.  We must not leave our cancer children’s hope for a cure on the back burner!  We must not remain just quiet heroes to our children. As Naomi pointed out to me, she relied on me to be her hero.  Our children don’t have a voice.  They hand over the responsibility to us to fight their battle for them as children and as such we must also fight the broader battle and become vocal heroes about this cause that impacts each of our lives as mothers of these precious children with cancer.

How do we do that? … by being open to those serendipitous moments that come to each and every one of us.  By embracing this cause, by raising awareness of the gold ribbon and the devastation of cancer on our nation’s children, by supporting research, by calling members of congress and asking them to support legislation that impacts our children, by connecting to individuals within our circle of friends and colleagues who can make a difference or who know people who can make a difference; by taking steps through those open doors and opportunities that come into our lives, and by not being afraid to fail because only through failure do we learn how to succeed.

Within weeks of Naomi’s second cancer treatments we agreed that children with cancer were getting the short end of the stick with regards to the development of new types of molecularly targeted drugs. Ours is a small patient population.  There is little incentive for pharmaceutical companies to invest in the high cost of drug development for such a small group of patients – patients who weren’t even able to speak for themselves.  We embraced the vision that there needed to be molecular research done on childhood cancer.  Pediatric tumors needed to be characterized so that biomarkers could be identified as a first step towards any potential new types of therapy.

With that vision, we engaged the people around us who had serendipitously come into our lives.  We hosted a dinner at our home inviting these individuals from the larger cancer community.  The dinner lasted 5 hours but by the time they all left that evening, there was a financial commitment to host a 3 day meeting with the top researchers from around the country focused on the need to develop a program for targeted drug development for pediatric cancer.  The meeting was held in May 2005 and today it has morphed into being the leading program within the NCI identifying pediatric cancer tumor characterization.  Known as TARGET – Therapeutically Applicable Research to Generate Effective Treatments (www.target.cancer.gov),  this initiative has resulted in great advances in the classification of high risk ALL, as well as cutting edge neuroblastoma research.  In the last year alone, the research resulted in the identification of a gene mutation known as IKAROS or IKZF1 which when present in high risk ALL increases the patient’s risk for relapse. This research is leading to new genetic tests to identify ALL patients with this mutation, who will subsequently be given more aggressive therapy.  TARGET started around the dinner table with friends met serendipitously, a vision and an opportunity.

As an extension of that initiative, Naomi and I realized that increasingly scientists were doing pieces of tumor characterization in labs across the country.  There was no integration of that data into a common dataset. This too didn’t make sense. We needed to develop an integrated molecular database where scientists could put all of their research information together. It was difficult to believe that this wasn’t being done anywhere.  But how do we do that?  We needed money again to bring together researchers to get their buy-in on such an idea.

Serendipitously, or as others believe, by the grace of god, another individual was brought into our lives. She reached out to her boss Mr. A. James Clark and his daughter Courtney Pastrick and through a generous donation from the Clark Foundation, we secured the National Building Museum in Washington DC for us to hold a gala with no cost to us.  Five of us organized a gala event which raised a quarter million dollars.  May 2009, a second meeting was held in Washington DC of the top molecular researchers in the country and a follow up survey from those scientists showed a supermajority vote in support of the development and subsequent use of an integrated molecular database.

This past year has led to additional opportunities, open doors and realizations.  I was asked to join a committee based in Geneva and subsequently act as mentor to developing a childhood cancer program in Bangladesh.  I had never been to a developing country before.  How could I be a mentor?  I didn’t know anyone who had any connection to the country at all and certainly wasn’t qualified to be a mentor!  Then a door opened, and an opportunity arose in July for me to travel to Dakar Senegal.  There I saw the horrors of the combination of childhood cancer and extreme poverty.  I will never forget the little girl, 18 months old who was dying without even pain medication from two massive tumors – retinoblastoma and Wilm’s tumor.  The trip to Dakar opened my eyes and heart to the children with cancer in developing countries and what I now saw as an opportunity in Bangladesh.

Days later in a dinner conversation with a colleague at a meeting of C-Change, I was telling him about this latest opportunity.  His response was that he had a friend who was building a cancer program for women with breast cancer in Bangladesh and I should go talk with him.  In the last few months, that meeting has led to more doors being opened—doors opened and lives that can be changed forever as a result.

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April 1st, 2008, Naomi learned that against all odds she was pregnant.  She had been told since those early days in transplant that she would be sterile.  As such, this little life represented hope to her and to all those BMT survivors who like Naomi believed they would never be able to have a child.  This little life also though represents however another generation whose lives have been directly impacted by their mother’s cancer treatments as a child.  Because of radiation damage to Naomi’s body which led to cervical incompetency and uterine vascular insufficiency, her daughter who she named Hope, came into this world 4 months early.  Born weighing 1 pound 7 ounces, she too has had to fight to survive.  Baby Hope represents another generation of children who had to fight for her life because of the toxic cancer treatments that were given to her mom to survive cancer as a child.  Here is Hope’s battle as a result of being born so early:

www.youtube.com/watch?v=xL4YNlV8fWU

The cause is great, and the work must go on.

I want to challenge you with Naomi’s favorite quote: “Do not go where the path may lead, go instead where there is no path and lead the way.”  I challenge each of you to create a path and lead the way on this cause that remains the number one disease killer of America’s children.