Nolan L. had just had his 9th birthday in November 2002 when he started having crippling headaches. As his mother remembered a year later:
I was concerned about Nolan’s behavior problems at school and was meeting frequently with his teacher, the principal and the vice principal. We had no idea that a monster was lurking inside his head, ready to strike.
I attributed the crankiness, complaints of headaches, and other subtle symptoms he began displaying as emotional distress because of the turmoil within our family. But sometime in October I made an appointment with his pediatrician. And it was at that time that the first fateful MRI was scheduled.
I vividly remember the drive to Sacramento with Nolan’s dad, clutching the films containing that ominous looking huge white spot in the center of his brain. Despite the dread I felt, I was still completely unprepared for the actual prognosis:
Brain Tumor. Highly malignant. No cure. Death imminent.
Nolan was with my mother in the other room, thankfully. I remember the wails coming from deep within my soul. I remember thinking I was going to faint. I remember feeling as if I was being turned inside out.
My baby, my little boy, my son!!!
The prospects were, of course, grim:
Conventional medicines and treatments offered no cure. Nolan was subjected to six weeks of intense radiation treatments and a round of chemotherapy, which would only offer a slight increase in his life expectancy.
On November 25, Nolan began the first course of treatment, Temodar and radiation. The hope was that it would stay the growth of the tumor, but his headaches continued after this stage of treatment ended in January 2003. February’s MRI brings bad news. The tumor continues to grow. In fact, his pediatrician makes arrangements for Nolan to enter hospice. Nerves in his face have been damaged by the radiotherapy and he has partial paralysis there.
Parents who end up choosing Burzynski are rarely interested explicitly in prolonging life–merely prolonging a child’s life for a matter months, anything less than giving them a full life, in fact, is an unacceptably unthinkable failure. Burzynski, at a steep price, holds out the specter of a cure. This is at the expense of vetted therapies and palliative care, which really do reduce suffering. Sadly, Nolan’s parents decide to go to Texas.
On the 22nd of March, a third MRI shows more growth, and he has lost some sensation in his limbs on his left side. Nolan and his mom are on the plane to Houston the next day. Over the next few days, Nolan has surgery to put a tube in his chest to receive the drugs, which will be infused continuously over the next several months. According to the family:
On March 25, Nolan was enrolled in a phase II government-approved clinical trial of the antineoplaston infusion therapy, which has shown great promise in treating the most difficult forms of brain cancer.
The phrasing here is somewhat misleading, though I understand the hope that it embodies. One should not understand that any drug in a phase II clinical trial is by definition unproved. A decade later, antineoplastons are still unproved, and the study that Nolan was enrolled in remains unpublished to this day, even though the family had to raise the money for him to enter the trial. In fact, antineoplastons are unpromising as ever.
On March 26th, Nolan starts on antineoplastons. He and his mom remain in Houston until April 17th, after they have been trained on how to use the pump, administer the drugs and fend for themselves. He remains on steroids.
An MRI on May 20th reveals that the tumor is stable. This is what someone might expect even for an untreated tumor. When a tumor is small and has, say, access to unlimited nutrients, it can and does grow exponentially. But as the tumor becomes bigger, the time between doublings increases, so what you have is a flattened ‘s’ shaped curve, illustrating Gompertzian growth. He is dizzy and has a lot of pain in his joints, the latter because of the steroids.
The MRI on July 15th shows that the tumor has grown by 13%. Even though Nolan has been on the ANP longer than he was on tested and approved chemotherapies and the treatment is clearly not working, the Burzynski Clinic recommends upping Nolan’s dose, keeping a paying customer on treatment.
Just three weeks later, on 6 August, Nolan has a number of seizures and goes into the hospital for two days. The family lowers the dose of the ANP. On the morning 23rd, Nolan is only semi-conscious and taken again to the hospital. By the next morning, he is unable to breathe on his own, his mother reports:
The kind team at Santa Clara Pediatric Intensive Care Unit kept him alive until his father and siblings could arrive at his bedside to say their last good-byes.
The next year, Nolan’s mother reflected on her experiences:
This time last year we were in Houston, Texas, undergoing those antineoplaston treatments. Even though the treatments are not something I would choose again, I did receive the huge blessing of renewing a friendship with my wonderful friend Lauri […] and her beautiful daughters (and awesome husband). They have been a continued source of support and encouragement to me this past year, and I know the bonds we share will carry through to eternity.
Perhaps, then, it is to be expected that nobody from the Clinic was singled out to be thanked when Nolan’s ordeal ended.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.