Burzynski Patient Rebecca L.’s Story

In January of 2000, according to the New Hampshire Union Leader (24 Apr 2000), 9-year old Rebecca L. became unsteady (she was not skiing well during a family trip, and couldn’t get off the bunny slopes) and she started vomiting.

The Boston Sunday Globe (14 May 2000) tells the story:

For the next few days, Rebecca didn’t feel like going to school. Then, when she did go, her parents received a phone call they will never forget. “Her teacher, who know the signs of brain tumors because she lost both her parents to brain tumors, called us,” [Rebecca’s dad] said. “She was crying when she called us. She said, ‘You’ve got to get her checked out today.'”

When they got to the doctor, according to the Union Leader:

The next day, the doctor told them: “We’re going to be looking for a brain tumor.” The [Ls] were stunned.

Becky was taken directly to the Elliot Hospital and following a CAT scan was transferred to Dartmouth by ambulance, where she underwent an MRI. [Rebecca’s dad] said doctors initially thought she was suffering from a benign tumor on the brain stem and scheduled surgery.

It was not benign. It was a malignant glioblastoma multiforme, and without treatment, Rebecca might have 2 months. She underwent 6 weeks of radiation. And that was about all that could be done. After hearing of two of the patients in area who claimed success on Burzynski’s treatment, they determined to go see him:

The family’s insurance policy with Anthem Blue Cross won’t cover the Burzynski treatment because it’s part of a Food and Drug Administration trial. Their old insurance policy with Tufts would have covered it, [Rebecca’s dad] said.

But he said Blue Cross did more than just refuse to pay for the Texas clinic treatment. “They cut us off from all the support,” he said, and won’t pay for MRIs, blood work or anything else.

While the costly Burzynski treatment offers only a 44 percent chance of success, “I have to try it. If you give up hope, you have nothing,” said [Rebecca’s dad].

The drugs that were supposed to be in trials were Burzynski’s patent medicine, antineoplastons. There is no compelling evidence that the substances originally derived from blood and urine have an effect on cancers. The Boston Globe (14 May 2000) also reported on this:

“The treatment in Boston offers no cure, but down there [in Texas] 44 percent of his patients have a response,” [Rebecca’s dad] said. “It affects their tumor in some way. And, half of that 44 percent are in remission. That’s not bad, going from zero percent chance of living here to 20% down there. When you are talking about your child, I would do it for a 1 percent chance.”

The 20 percent cure rate the father believes is absolute, unmitigated, unsubstantiated bunk. There has never been a trial that established efficacy; there have been zero convincing publications. That number is apparently conjured from the ether. It’s even sadder to realize that when the FDA went in and examined his trial results, they found the recorded outcome did not match the actual response 66% of the time, and apparently it was always inflated. Rebecca’s dad unwittingly lays out exactly why Burzynski has been so successful attracting desperate parents into his office. He oozes hope to the hopeless. How anyone could give that number to this family when they are the most vulnerable is unfathomably cruel.

The cost was sufficient that Rebecca’s father, like those of so many other desperate dying children, went to the media to raise money.  Both the Globe and Union Leader ran the address of the fund that had been established for Burzynski. The Globe quoted Rebecca’s father:

“There are a lot of expenses and I don’t know how we’re going to do this, but we love our daughter and we’re going to do it.”

And they did it. They raised over $100,000 for Burzynski. The stunning generosity of communities is Burzynski’s cash cow, and he milks it over and over. In March of 2001, the Union Leader filled in some of the gaps about the fundraising:

Their insurer would pay none of the bills, so the family let Becky’s plight be known. Fundraisers included a Christian music concert at Veterans Park, a golf tournament at Tory Pines and a NASCAR fundraiser at the Pinardville Athletic Club.

A phenomenal effort. We don’t get a play-by-play about what happened with Rebecca’s treatment. We get a summary from her father:

For a while they worked, said her father […]. “The money, if people donated, it was so worth it. We had a whole year with her. Every day was treasured,” he said […]. She took a turn for the worse in November, and doctors said nothing else was possible.

Yet another family reporting that the treatment was working before it wasn’t. There are endless cases of this on the website. We don’t see what “working” means here. Not growing? Shrinking? Unknown.

It’s difficult to explain why the father credits the treatment with the year, as it is exactly what the doctors at Dana-Farber said the radiation might give her before the family even went to Burzynski, as reported in the Globe on May 14, 2000:

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Sadly, the intervening year can’t reasonably be credited to Burzynski, no matter what the family believes, though it is wonderful that they did have a year together before the end.

On February 22, 2001, teenaged singer Aaron Carter performed in the area, and a local radio station managed to get tickets and a back stage pass for Rebecca. The encounter was described the next day in the Union Leader:

Before the show, he met with 10-­year ­old Becky [L], a wheelchair-bound Manchester girl with inoperable brain cancer. Her meeting with him was quiet ­­ she was really too shocked to speak.

“I like your nails,” he said to her. She grinned . She’d had them done for the show.

Then he wrote “Becky” on his palm and said, “I might even mention your name on stage.”

And when it was time for the thin, towheaded superstar to go, he told her, “You better enjoy the show.”

“I will,” she said back. He “adiosed” and ran toward his backstage area.

Becky’s mother […] said her daughter acted like any other teenage girl this morning.

“She couldn’t wait to start getting ready,” she said. “She knows every word on his CD these days.”

The following Tuesday night, her breathing became erratic.

The nurse gave her sedatives, then pain relievers. Before Becky closed her eyes, she and her father exchanged their last words.

“I asked her if she was still in pain. She shook her head she was,” he said.

[He] stayed up until 5 a.m., and went to bed after the hospice nurse said it could last for days. His wife […] checked on Becky at 6 a.m.

She died before 7.

Rebecca L. died at home on Feb 28, 2001.