Wednesday, February 29, 2012

Brent's illness -- a speech for the Histio Cure Fund dinner

This is the speech I will be presenting tonight at the Histio Cure Fund dinner at the River Oaks Country Club, which is raising money for Dr. McClain's research. I love writing, I love quilting, but my family is my one true passion. Being by Brent's side through his eight years of treatment for Langerhans cell histiocytosis was the most difficult,  heartbreaking and humbling thing I've ever done. I am very angry that 18 years after his diagnosis researchers are no closer to figuring out why histiocytosis occurs and haven't developed any effective treatments that are safer than chemotherapy. One reason is that there is no federal funding to support these efforts.

If you would like to help, in Brent's honor, please contact me. I appreciate you passing along the link to this post.

I thought about calling my remarks tonight, A Boy and His Doc.

Because, really, Brent’s story is as much about his relationship with Ken McClain over the last 18 years as it is about his battle against Langerhans cell histiocytosis.

Brent was diagnosed when he was just 17 months old, right before Christmas 1993. What would be his final chemo infusion finally took place nearly eight years later, in November 2001. His entire preschool and elementary years were spent under the specter of illness and treatment, alternating hope and despair ... and for us, his parents, nearly constant low-level dread.

Brent doesn’t recall his early years of chemo, but he does remember at age 3 christening Dr. McClain the Doctor with the Good Hair. It was only after he grew older, realized the seriousness of disease, and understood the extraordinary efforts that Dr. McClain had made to control it, that Brent replaced the Good Hair designation with another title, equally appropriate. At his Eagle Scout Court of Honor, Brent publicly declared Dr. McClain his hero, saying simply, “he never gave up trying to get me well.” Now, even outside of the medical care, Brent might not have achieved Eagle rank without Dr. McClain’s help.  That’s because, when Brent needed a partner for a 50-mile bike ride to complete his requirements, Dr. McClain enthusiastically agreed. On a Sunday morning, the two of them pedaled all across Houston. Brent hasn’t been back on his bike much since, but that’s another story.

Beyond cute names and adulation, however, Brent and Dr. McClain are linked together in medical history.

You know, when a disease is rare, there’s no typical case. But at diagnosis, it did look like Brent’s histiocytosis might be managed fairly easily. His first symptom, which wasn’t recognized at the time, had actually appeared about three months earlier. Of all things, it was a yellow waxy rash on his scalp. Our pediatrician prescribed topical treatments but didn’t seem overly concerned. And neither were we. Then Brent awoke one morning with a swollen eye. Our ophthalmologist felt a divot when he examined Brent’s eyebrow bone. An immediate MRI revealed a tumor in the orbit behind his left eye, as well as damage to the eyebrow and to a bone behind his ear. Although she had missed the early significance of the scalp rash by itself, when our pediatrician put that clue together with the bone destruction, she felt strongly that Brent had histiocytosis. We were seen at Texas Children’s Cancer Center two days later.

After a battery of tests to confirm the diagnosis and extent of the disease, Brent underwent radiation to the tumor and began a one-year regimen of weekly chemotherapy injections. We were cautiously optimistic when the year of treatments ended … and devastated just six weeks later when we were told the disease had returned with a vengeance. Not only were there more damaged bones, but errant cells had entered his brain and were interfering with the flow of cerebral spinal fluid. Like winning the worst lottery of all time, Brent had developed an extremely unusual complication within an already mysterious condition. We learned that most kids like Brent eventually were confined to a wheelchair or had significant neurological deficits. Some didn’t survive.

During the next seven years, Dr. McClain worked vigorously to halt the progress of Brent’s brain disease. We tried every accepted chemotherapy, including one delivered directly into his spine. When he was old enough to have radiation to the brain without it affecting his intellect, we tried that, too. But every MRI was a heartbreak, showing more disease.

On the other hand, we were heartened by the fact that Brent had no neurological symptoms. He was meeting his intellectual and physical benchmarks and was a lively, happy kid. Although he had developed diabetes insipidus, that was well under control. He had even successfully undergone a dramatic 9-hour surgery to reconstruct his eye socket.

Then his third grade teacher sent home two writing samples that Brent had done just a week or so apart. One showed his normal, large, careful printing. The other looked like it had been scratched out by a stroke victim. And when he walked, we now saw that his gait was slightly off.

We had exhausted all of the alternatives. The neurological decline we had feared had begun. When Dr. McClain shook his head and said with a sigh, “You never stop challenging me, Brent,” we imagined there was nothing left to do.

Fortunately, the Histiocyte Society – which is the international group of doctors and researchers studying histiocytosis – was meeting in Vienna later that week. Dr. McClain would take Brent’s MRI films with him and see if the world’s other experts had any new ideas.

They didn’t.

But, they agreed that Dr. McClain’s last-ditch plan to administer his new chemotherapy protocol was worth a try. Although this treatment had been effective for histiocytosis in the bone, it had never been used against disease in the central nervous system. Another course of low-dose, highly targeted radiation to the brain was also prescribed. Without other options, we agreed to what amounted to a pretty significant experiment on our child.

Astonishingly, after so many blind alleys and setbacks, Dr. McClain’s previously untested treatment worked. All we had hoped for at the next MRI was a stable report. Instead, there was actually some improvement. Within weeks, Brent’s symptoms resolved: his handwriting returned to normal, as did his gait.

Dr. McClain’s treatment, which finally halted Brent’s disease, is now the accepted protocol for children with histiocytosis in the brain and central nervous system. It has helped several other children, although so far none has responded as well as Brent did.

Brent has been off treatment 10 years now. We only see Dr. McClain in the clinic once a year. At our last appointment, he referred to Brent as a great story – a patient who’s gotten healthy and stayed that way.

Today, Brent is a sophomore at Lone Star College. He’s active in our church. He plays golf and the piano. He still has a few medical issues that keep him from doing all he’d like to, but we know those will resolve some day, too. Brent’s spirit, courage, ambition and good humor are an inspiration to a lot of people. As I hope is this story … of a boy and the doctor who was devoted to getting him well.

No comments:

Post a Comment