The Hayden Story
The Hayden Story is a sad one. As his mother, it is hard for me to tell it. But maybe, just, maybe, the story of our journey and our fight can help others who face similar medical challenges
On March 13, 2005 Hayden was diagnosed with Acute Lymphcytic Leukemia (ALL). Prior to that time he was a healthy and popular l4 year old boy who excelled in math, choir, tennis, golf, soccer and was quarterback for his school football team. His family and many friends called him the Golden Boy. He lived an idyllic life.
He had never been sick before, not for a day. . Although the cramps in his stomach had bothered him for a few days, we never thought anything was wrong. Four days prior to his diagnosis I had taken him from school to see a new doctor, a family doctor, who completely misdiagnosed him. Although the nurse asked “how long has he had this low grade fever and rapid pulse”, both of which were news to us. When the doctor appeared, she dismissed his symptoms as bronchitis, prescribed antibiotics and returned him to school.
By Saturday, the l2th, I knew we weren’t dealing with bronchitis. By Sunday we were in the emergency room with a white cell count in the high 300,000’s. As Leukemia is a fast moving, fast divider and multiplier of white cells, I have wondered many times if we had had a competent doctor and caught these cells at 40,000 or 50,000 could we have made a difference in the outcome.
We began chemotherapy that very evening. It was as dreadful as you can imagine, but Hayden never complained. He had been going through the usual Middle School things with the school regarding the length of his hair, and a true definition of “the collar.” Of course the chemo took those everyday arguments off the table.
There was only one pediatric oncologist in Las Vegas and we, at that point, had no reason to question him. He administered the chemo, and we started with the treatment and prayed. By mid-May Hayden was in remission. We were ecstatic. When I asked the doctor here what was the next step he told me it was three years of heavy chemo. Because that is an arduous and invasive course of action, I asked the doctor “what if I have some questions about that” and he told me flat out I didn’t have the right to ask those questions.
The right? I was the sole parent to his child his whole life. I’m an internationally acclaimed political consultant, I excel under pressure. I am no dummy. But according to this guy … I had rights to look at the best treatments for my own son only as long as those treatments were exactly what he recommended. No second opinion. Nothing.
When I refused the next course of heavy chemo treatment to explore what other options were available, I was sued. The State of Nevada, the doctor and the District Attorney all joined in to fight me for medical neglect and proclaimed me an unfit mother because I asked whether there might be a better, more effective treatment for my son.
I was lucky. I was able to get the best attorneys and the best team. I pointed out that the cancer treatment for children in this country has not changed since the l960’s, while top medical professionals in other countries were leading the way in testing – and proving -- more effective, less intrusive treatments. I pointed out that by refusing the perhaps outdated treatment the doctor insisted upon, we were taking over a million dollars out of this doctor’s pocket – which may not have been a concern for him if I hadn’t had a gold plated insurance card to pick up the tab – no questions asked.. I suspect the doctor would have had no objections to a patient looking for alternatives if the patient were the child of indigent parents with no ability to pay.
Hayden and I went to court four times on this issue between mid May and mid July. Adding to the nightmare scenario, his natural father -- who we had seen only on forced visitation for l2 years -- filed a Friends of the Court Memo with the court against Hayden and me and sided with the Doctor.
In mid-July, as we were fighting the bad guys instead of Hayden’s cancer, it returned. His white cell count jumped up again. The doctor couldn’t wait to get rid of us then. He told us in the hallway of the hospital while we were doing another round of chemo that the best we could hope for was to “take him home to die.” I put those words in quotation marks here because those were his exact words. Instead, Hayden and I got on an airplane the very next day and went to Switzerland. We talked to doctors there and moved to Germany, where it seems the most innovative cancer research and treatment in the world are ongoing. We had the most wonderful doctor who stayed with us and held our hand from day one. When we would try one thing that wouldn’t work his whole office would look into what was next. And the whole while Hayden and I had a time, we talked, we laughed, we discussed what if, but most of all we treasured our time.
The Doctor in Germany finally found a virus that attacked the bad cells and left the good ones alone. We tried it. The balance of Hayden’s good cells (20%) and his bad cells (80%) reversed, in 36 hours. It was miraculous. Then we couldn’t get the virus again so we went backwards, but we persevered. We were finally able to get the bad cells down to l00 and we knew we were close then.
Then we got the bad news, the entire l5 weeks we had been in Europe fighting for Hayden’s life, his natural father had been in courts in Las Vegas convincing a judge we were hiding from him. He got the Judge to proclaim if we weren’t back here on October 25th to testify in court then he was taking Hayden from me and giving him to his father. The physical custody issue itself didn’t frighten me with a l5 year old son, as he was old enough to make his own decisions. But the medical custody was frightening. We returned.
It took us l0 minutes in court to get the case dismissed. We got ready to return to Germany to eradicate the few remaining cancer cells … but Hayden had caught a fungal infection in his port line (a line inserted to administer drugs) on the return trip. We couldn’t outrun it...fungal infections are harder and longer than normal infections.
Hayden died within a month of our returning from Germany at the insistence of his father, the Nevada oncologist and the court.
I write this sad story to tell you some important things … cancer treatment in the United States is a complete racket. There are well-documented actions we all can do take to keep the cancer from attaching in our bodies and to get rid of it, but cancer doctors seem disinterested, unwilling and unable to tell you about these things I find this heinous.
Secondly, the fact that a parent’s rights can be overridden by a money hungry, ego driven doctor is beyond belief. But Hayden’s case is a perfect example of this. It happens, and children die as a result.
Thirdly, I want everyone who is facing some sort of personal physical challenge to look at the alternatives. There are a lot of them out there. Sure, not everyone is able to take off and seek these treatments like we were, but if you ask questions and challenge your doctor to get outside the box you will be amazed at the results. I was.
I have started this Scholarship in Hayden’s name to help continue what good works I know he would have done in his lifetime. Someone told me recently they didn’t believe the final chapter of Hayden’s life had yet been written, and maybe the real message of his life is a lesson for other parents about the state of cancer treatment in America -- and the more effective alternatives available elsewhere.
I’m dedicated to getting that message out.
Nancy Todd Tyner