JZ Heroes

We live in a day and time when the word "hero" is used all too freely to describe acts of accomplishment.  This is a story of a true hero that performed an altruistic act of bravery and decency, all too rare in our current world.  Let me start when our daughter, Jori, was diagnosed with cancer.

At the time that Jori was diagnosed she was a vivacious cheerleader, played softball and gymnastics.  At age 12 and in sixth grade, her leg started bothering her, but since she was so athletically involved, we assumed she had pulled a muscle.  The pain persisted intermittently and on April 27th 1999, Jori was diagnosed with a rare childhood disease called osteosarcoma.  April 27th is a day that we will never forget as long as we live.

Osteosarcoma is a rare cancer that typically strikes children during adolescence.  Each year, approximately 1,000 children are stricken with osteosarcoma.  with no drug currently available to cure this disease, many of the children die.  Sadly, osteosarcoma is referred to as an "orphan disease" because it is rare and very few research dollars go into finding a cure.  You can read more about children's bone cancer here.

When Jori's cancer spread from her femur to her lungs we tried every possible option to help save her life.  One day, while researching on the internet, we came across a drug that had held promise in previous clinical trials curing osteosarcoma.  The drug, Muramyl Tripeptide Phosphateidylethanolamine, or MTP-PE had been given to children who had a relapse of cancer.  The drug showed some very promising results.  The problem we ran into was that the company that had developed the drug had stopped production because they were a small biotech company that had exhausted its capital and was unable to continue to manufacture and development of MTP-PE.

I was able to contact Hayden Leason, The CEO of Jenner Biotherapies, a biotech firm in California, which currently owned the drug rights to MTP-PE.  I still remember my first conversation with Hayden.  He explained the cost of the drug to me by saying, "Mr. Zemel, are you a wealthy man?" to which I responded, "Well, no sir, I am an educator, why?"  He replied, "This drug is extremely expensive to produce."  I replied, "How much does the drug cost to manufacture?"  He stated, "Around a million dollars."  My heart and all sense of hope were momentarily obliterated.  I regrouped and did not give up on my hope of getting the drug for Jori.  I told Hayden, "If it cost a million dollars, then I'll come up with a million dollars."  He responded that he would make some phone calls and see what he could do.  I hung up the phone and began crying.

A few nerve racking days later, I was standing in the neighborhood Kroger's supermarket when my wife, Nina, with new vigor and hope in her voice called.  She said that Hayden Leason had found 1,000 vials of MTP-PE sitting in a warehouse where they had been for two years.  Hayden was going to the Board of Jenner Biotherapies to get permission to give the drug to Jori.  I will never forget that day!  I broke down crying in one of the aisles, I'm sure people thought I was experiencing some form of supermarket shopping disorder.

My next conversation with Hayden began with his explanation that the Board, along with the company lawyer, had advised Hayden not to give us the medication since they were worried about a lawsuit from us, in the event the drug did not save Jori's life.  As Hayden relayed this story to me my heart and hopes began sinking to even lower levels than I thought were imaginable.  I knew without the MTP-PE Jori's death  was inevitable.  At that moment, Hayden informed me that against the advice of his Board and Lawyer that he would give Jori the drug.  Nina and I were elated that he would risk everything to try to save the life of our daughter; a child that he had not ever even met.  This is the moment that we knew that this man was a true hero.  Hayden, along with Nina and I, began the process needed to receive hospital approval in order to receive and dispense the MTP-PE to Jori.

Unfortunately, by the time Jori received permission from the hospital to administer the MTP-PE and treatment began, the tumors in her lungs had grown too large.  Although the medicine still showed signs of progress, it was just too little, too late.  The earlier success of this medication had occurred when it was used on extremely small tumors and on the microscopic cancer cells associated with this disease.

Hayden is the hero in this story because he took a major risk against all advice to help save our daughter, Jori.  Nina and I still think back to one poignant moment shortly after Jori found out that she would be receiving the MTP-PE.  While Jori, Nina and I were in the hospital we called Hayden to thank him.  We fondly remember Jori talking to Hayden and the tears of hope and joy rolling down her beautiful face.  That's what being a hero is all about.  Through his actions, Hayden placed a young girl's life and well-being before his own.  It's for this reason and with love in our hearts that we have dedicated this poem by Jori to Hayden Leason, his wife Helen and his entire family.