It was four years ago, in January 2011 that debilitating headaches began to plague then 14-year-old Alysa Erwin. A few months later the Erwin family’s lives were upended when she was diagnosed with grade 3 anaplastic astrocytoma – brain cancer – at the Mott Children’s Hospital at the University of Michigan Medical Center. The prognosis was grim; Alysa might live 18 to 24 months with the help of chemotherapy. The tumor was one of the spider web types; it was spread through her brain with no centralized mass that could be targeted with radiation.
It was shortly after they began the treatment that the Erwins became familiar with medical marijuana and Rick Simpson Hemp Oil, a cannabis extract that some people use to treat cancer, and began traveling an up and down trail that they’re still on. Unfortunately they are foundering their way through the process with little guidance from the medical establishment as they try to save Alysa’s life.
After Alysa was first diagnosed she was given a course of chemo, a pill form drug called Temedor and sent back to their northern Michigan home. The chemo treatment had her bedridden.
“She was deathly sick,” says her mother Carly Erwin.
The teenager’s headaches were worse and she couldn’t keep food down. Her parents worried that the treatment was as bad as the disease. Then they heard from Carly’s father who lived downstate. He’d heard about the Simpson oil and thought that might hold some hope for his granddaughter. The family began researching and watched the videos What If Cannabis Cured Cancer and Run from the Cure. Those and numerous others on the subject are available on YouTube.
“This is the end, we thought,” says Carly. “If this is all that chemo can do, at least we can make her comfortable for the months that she had left with us.”
After some family discussion, including Alysa, they decided to stop the chemo and try the Simpson oil. The next step was to actually get some, which they did with the help of Gersh Avery in the Ann Arbor area. She took her first dose of the oil in early August. Carly mixed some with peanut butter and fed her daughter a teaspoon full. After the very first dose there was a miraculous transformation in the sick girl.
“About 30 minutes after taking cannabis oil she was out of her room eating and smiling,” says Carly. “We knew what we wanted after seeing her but we wanted to see what she wanted because it was her body. The light was back in her eyes again. She was back to herself. She said she wasn’t doing chemo anymore; she was only doing cannabis oil.”
The Erwins were unsure of the legal territory they were in and feared telling the doctor what they were doing. The next MRI was taken about three months after the initial chemo treatment. That one showed no growth in the cancer. The next one showed similar results, but the doctor had some questions. Alysa’s blood work was not showing indications of her chemo. The Erwins admitted they were using hemp oil instead of the chemo. The doctor’s response was, “whatever you are doing, keep doing it.”
Unfortunately, like so many other cancer patients using hemp oil treatments, that’s the extent of advice they got from the medical establishment regarding marijuana. However, cobbling together information and strategies from a number of different sources – Carly talks to others using the treatment from as far away as Australia – and using trial and error the Erwins have developed a protocol and drastically changed the way that all of them eat. They stopped drinking tap water.
“Natural meat, organic fruits and vegetables, we’re staying away from all the processed foods,” says Carly. “We used to eat frozen food, canned food like a lot of other people out here. We haven’t eaten fast food in I don’t know how long. There are just so many people getting cancer out there. It’s just in our food; I really believe that.”
In the summer of 2012 the cancer evolved into five solid tumors at the back of Alyssa’s head. One was near her brain stem and threatened her ability to breathe and walk. The Erwins agreed to have radiation treatment then, although they continued the hemp oil. In January 2013, two years after the onset of her headaches, and about the time Alysa was originally expected to die, her MRI showed no cancer.
“The doctor looked at the MRI and she just smiled,” says Carly.
Cancer patients have to take drugs to keep their cancer away even after they are declared cancer free. Simpson oil patients generally take a maintenance dose in order to keep their cancer at bay after the intense treatment. Alysa took a maintenance dose for a while, but circumstances and the cost led to her not being able to get a steady supply. Financially the Erwins live from check to check and don’t have a lot of money. Also the teenager had wearied of taking the oil which sometimes upset her stomach.
“Once you have brain cancer like that, you always have to be on the oil,” says Carly. “What’s the maintenance dose? We don’t know. Wish we had doctors on board because there’re so many questions. It’s awful.”
In summer 2014 Alysa got sick and started losing weight. In mid July she weighed 88 pounds. A July 24 examination revealed that after about 18-cancer free months it was back. The tumor was more like putty surrounding her brain, but it had also spread to her ventricles, her brain stem, and spinal fluids. Her pain was off the charts. Carly says doctors told her that Alysa had a couple of weeks to live. The family agreed to radiation therapy in order to buy time to get hemp oil into Alysa’s body.
She responded quickly to the hemp oil. It allowed Alysa to forgo pain medications such as morphine, dilaudid, and oxycontin. However, regarding the cannabis treatments, all the doctors said was, “Keep doing what you’re doing.”
The financial strain is tremendous. While Alysa went through radiation treatments she and her parents spent a month living in a hotel. Unable to work, they collected donations at meetings of medical marijuana activists. They were separated from their two sons who stayed up north preparing for a new school year.
Alysa began gaining weight and they were back home by the time her 18th birthday rolled around in early October. She had again beaten the odds. A November 24 MRI showed improvement.
“The tumor has shrunk a lot,” says Carly. “The doctor said that it looks really, really good, we’ll see you back in three months.”
Carly says the doctors still won’t talk publically about it. They declined an opportunity to allow a news team that wanted to cover the story in September.
Things are still tough for Alysa and her family. Most of her father’s work is during the summer, which he missed much of this year. Alysa spends much of her time in bed as she weathers the cancer fight. They have little money for recreation or things the three teenage kids would like to have. There is social stress as some friends don’t approve of the hemp oil treatments. Carly and her husband David wonder if they are doing the right thing as they struggle through this.
Alysa’s weight is up to 110 pounds. Her tumors are receding. She is alive and there is hope she will have a future.
“Her scans look amazing, they really look amazing,” says Carly.
When there was no other hope, like thousands of others, they turned to hemp oil. That’s the bottom line.