Alysa Erwin’s cancer is back, and doctors won't help her with cannabis oil treatment

Aug 27, 2014 at 1:00 am

I first wrote about Alysa Erwin in December 2013. At the time, she had been cancer-free for 11 months.

Alysa's and her family's ordeal started in January 2011 when she was 14 years old. She started having debilitating headaches, and in the spring was diagnosed with Grade 3 anaplastic astrocytoma — brain cancer — at the University of Michigan hospital.

Her parents were told she might live 18 to 24 months with chemotherapy treatments. After one round of chemo, Alysa was so sick her family decided to forgo conventional treatments and try treating her with Rick Simpson Hemp Oil.

This treatment was created by a Canadian man named Rick Simpson to treat his recurring skin cancer. It takes a pound or more of high-grade marijuana to make about 60 grams (a little more than two ounces) of oil. Cancer patients are advised to build up to three grams a day for treatment.

The change in Alysa was seemingly miraculous. After being bedridden in pain and unable to eat, she ingested a half-gram in half an hour. Soon she was up, smiling and eating. Her first three-month checkup showed no further cancer growth. By January 2013, about the time she was expected to die based on the original projection, Alysa's MRI showed her to be cancer-free.

According to the Simpson protocol (which is not an accepted treatment by any established medical entity), after the cancer has gone away, the patient has to take a smaller maintenance dose.

"Once you have brain cancer like that, you always have to be on the oil," says Alysa's mother, Carly Erwin. "What's the maintenance dose? We don't know. Wish we had doctors on board because there're so many questions. It's awful."

Alysa's doctor won't discuss the hemp oil treatment with the Erwins other than to say, keep doing what you're doing.

For a while, Alysa was getting a half-gram a day, then an amount about the size of a grain of rice. In the fall of 2013 the Erwins lost access to a continuous supply of hemp oil. Sometimes they had it and sometimes not. The quality of the oil they could get varied, so they weren't sure how much to use. Maintaining a continuous supply is risky because you're operating on the fringe of the law, and it's expensive. The Michigan Medical Marihuana Act doesn't allow possession of more than two ounces at a time for patients, and a pound of high-quality marijuana costs somewhere around $3,000 or more.

In addition, sometimes it upset Alysa's stomach, and Carly wasn't keeping close tabs on the now 17-year-old girl (she'll be 18 in October) to make sure she was taking it regularly.

"I beat myself up for not making sure she was taking her cannabis oil," Carly says.

A January 2014 MRI showed no cancer. In April, the test was done with a different kind of machine. It showed a small spot on Alysa's brain, but Carly says the doctor thought it might be because of a change in the way the test was done. Her understanding was that the doctor would check it out and get back to her. That never happened.

"I thought no news is good news," Carly says.

But over the next few months, Alysa began getting sick again and losing weight. On July 21, she weighed 88 pounds. They made an appointment with the doctor for the 24th. The family had to travel to Ann Arbor from up north. After the checkup, they got the worst news:

Her cancer was back.

The first time it was a spider web tumor spread around in her brain. This time it's like putty surrounding her brain. It's also in her ventricles, in her brain stem, and her spinal fluid. The Erwins understood Alysa had a couple of weeks to live with radiation therapy, which Alysa was undergoing as of last week. There have been various complications, such as swelling of the brain, tremors, and off-the-charts pain. However, the Erwins found some hemp oil and have been giving it to Alysa.

"She's on the hemp oil," says Carly. "She looks pretty good. We're praying and hoping that this cannabis oil is working because nothing the doctors can do for us will. They say they're just going to buy us some time."

Carly says the hemp oil has allowed Alysa to forgo pain medications such as morphine, dilaudid, and oxycontin. All the doctors will say is "Keep doing what you're doing."

"We can't give it to her in front of them," Carly says.

It's an ordeal. The Erwins have been staying in a hotel for a month and expect that, with good news, they're going to be here another three weeks. They have two sons back home who are getting ready to start school. Neither parent is able to work right now.

But there's already a bit of an uptick: Alysa has gained 10 pounds since starting her hemp oil regimen. She had radiation treatments Monday through Thursday of last week. I spoke with Carly late Thursday afternoon after Alysa's radiation.

The girl is hanging in there.

There has been much hoopla and praise for The New York Times and its recent editorial calling for the federal repeal of marijuana prohibition.

The Times followed the editorial with a six-part series examining many aspects of the issue, from states' rights and criminal justice to health and regulation. All of it coming down on the correct side of sanity and legislation based on evidence.

In response to the series, The Huffington Post wrote, "Given the [Times'] influence, it could be that the endorsement of federal legalization of  marijuana could spur politicians, organizations and publications to do in kind."

Even Keith Stroup, founder of the National Organization for the Reform of Marijuana Law, praised the editorial and the Times for its stance.

I say, what took them so damn long?! The truth is that there has been little evidence to support the prohibition of marijuana and plenty of evidence against it.

In an editorial on, Stroup touts the Times piece and a Brookings Institution report titled "Colorado's Rollout of Legal Marijuana Is Succeeding."

"These both were significant events because they involved respected institutions known for their careful and thorough analysis of important public policy issues," he writes.

With all due respect to Stroup, I say that if the Times is so careful and thorough, why didn't its editors weigh the evidence long ago and call for an end to prohibition? It mirrors the Times' lack of propriety in the ramp-up to the Iraq War and President Bush's claim that Saddam Hussein had weapons of mass destruction. The Times later apologized for not examining that claim more closely. But that's the point: It was late. Just as it's late about marijuana.

The Times' stance smacks of jumping on the bandwagon to me. It would've shown far more courage and thorough analysis had it come long ago.

That said, I welcome what the Times adds to the conversation. If for no other reason than it gives establishment figures a load of information to back themselves up when they finally decide give up their prohibition addiction. But this information has been out there for a long time; if only they'd bothered to pay attention. mt