Whatever Happened to Billy Best?
It is early evening and in the basement of the Catholic church on McQuan St. in Hanson, Massachusetts, a small group of people sits around a table, discussing their cancers. Phyllis, a thin, fragile looking woman, perhaps in her forties, is a newcomer to the group. She has been in remission from lymphoma but has recently had a recurrence. She has come here in hopes of learning something new. Next to her is a young man in a hooded sweatshirt, hands stuffed into the pockets, as if in attempt to restrain his energy, coiled and ready. His name is Billy Best, a name that has meaning here beyond its winning sound. There are others around the table. Whether or not they realize it, everyone is slightly facing Billy, who does not speak until he’s asked a question and then it spills, a warm rush of hopeful words.
This is a scene that is likely being enacted in thousands, perhaps millions, of other churches, halls and living rooms around the globe. If nothing else, cancer is global and knows no boundaries, nor does it discriminate or make false judgments. Here is no different from anywhere else. Except that they have Billy. And because of him, they have a new kind of hope.
Phyllis has recently begun drinking Essiac tea as part of her regimen. “My family thinks I’m nuts and ooh, do they hate the smell of that stuff! I’m in the kitchen there, mixing up a batch,” and she makes the motions of stirring a big pot. “I call it my witch’s brew!”
Everyone laughs and nods. Yeah, that’s what I call it too, some mutter.
She has really come to ask Billy about 714X, another esoteric remedy. It will require her to inject herself once a day, in the lower abdomen and she is extremely apprehensive about these injections. She would like to hear from Billy how to do it.
“I never had any trouble,” he says, reassuringly. “Once you find the right spot, it’s easy.”
Again, everyone nods and says things like Yeah, you’ll see, it’s really not hard.
But is it painful? she wants to know.
“I don’t know, you get used to it, I guess,” Billy says. “Sure beats the alternative!”
Billy’s mother, Sue, is the only one here who does not have or has not had cancer. On the table in front of her, Sue has a bottle of Essiac, nothing like what one expects of a “tea.” Packaged as it is in a green, round-shouldered bottle with an old fashioned looking label, the substance has the quaint appearance of a folk remedy. Alongside the Essiac are copies of newspaper articles and books about Essiac and 714X.
Both of these substances are legal in Canada but are not approved by the FDA in the United States. Technically, what Sue Best is doing here this evening is illegal. However, most everyone who comes to the Bests, who operate under the umbrella of Best Enterprises, do so after trying many other treatments. Sue Best has no compunction about referring cancer patients to these products. She considers herself a conduit, a passage through which these people can pass if they need to. “A lot of people who use these alternatives have tried just about everything else. It would look pretty sad if they (the authorities) started hassling them at this point in their lives.”
As for the money, there is not much involved here. A bottle of Essiac costs $18 and a month’s worth of 714X goes for $300 – not much when compared to the many thousands of dollars involved in the accepted methods of cancer treatments.
The meeting lasts about an hour. These do not seem to be ordinary cancer patients. For one thing, everyone has a full head of hair. For another, they appear to be healthy, even vigorous. For that evening, Phyllis’s anticipation becomes the focus. Billy speaks mostly to her, though everyone else listens intently as he calmly tells her how to make injections, the kinds of things he eats (vegetarian, no caffeine, whole grains), and the importance of taking vitamins. He speaks with the assurance of someone well educated in the topic. His soft black hair and his dark skin reveal his Native American roots, which somehow match his softly spoken words.
There is a reluctance to break but at last the members begin to rise and climb the steps out into the big parking lot, fragrant with the blossoming trees that shine in the late May moonlight. Phyllis turns to Billy, who she has never met before tonight. She hugs him like a brother.
“Good luck,” he says.
“Thank you so much,” she says. “See you next week!”
Ten years ago, Billy was on a different mission. On October 26, 1994, the 16-year-old cancer patient pulled his backpack out from under his bed and tucked his skateboard under his arm. His father was in the basement and his mother was not home. Quietly, he walked out the door of his family’s home in Norwell, Massachusetts, hopped onto his skateboard and skated away.
Since July of that year, Billy had been under treatment for Hodgkin’s Disease at the world renowned Dana Farber Cancer Institute (DFCI) in Boston. Each week, he received another round of chemotherapy. Each week, he became sicker, weaker. To his mind, this was not the way to be healed. Like a prisoner waiting for the right moment to break away, Billy began to sell some of his belongings, a video here, a stereo there, skateboards parts, athletic shoes. Whatever he thought his friends might want to buy, he sold. The money began to build. Soon he had several hundred dollars in cash. And a plan.
Billy knew he was going to die. His aunt Judy had recently died of breast cancer. He had watched her go through the same treatments he had, gotten just as sick, just as weak and then she died anyway. So, he thought that if he could find his way to California, where he used to live with his parents, he would be happy. He thought that if he could just watch the sun set and then go to sleep, what could be better than that? That was the way he pictured himself dying. So he kept this backpack under his bed. He had four pairs of shoes in there. Of course, he would take his skateboard, the heart of his life. But he thought he might end up having to skateboard across the country, which made him think he would need a lot of shoes. And socks. He did not want to end up being one of those homeless people with smelly feet. So he felt a good supply of socks would be a good idea. He kept the money hidden. Maybe he had enough for a bus ticket to California. He wasn’t sure.
So that morning in October, when he got to the bus station in Boston, he found out he really didn’t have enough money for a trip to California so instead he bought a one-way ticket to Lake Charles, Louisiana. He liked the way it sounded, like it would be pretty when he got there. Once he got on the bus, a feeling of intense peace came over him, like nothing could touch him now. He was safe. No more treatments. No more being sick. With his skateboard stashed in the overhead, he put on his headphones, sat back in the seat, and let the music roll.
When the bus arrived in Lake Charles, Billy was disappointed to find it was a big industrial place, not what he’d expected. So for another twenty bucks, he bought a ticket to Houston. That seemed like a good place, at least it was warm. Once he got there, he put his stuff into a locker at the bus station and took off on his board. Pretty soon he met some kids, skating. He told them he had had a fight with his parents and that he’d run away. That’s pretty much what he told everyone, even though it hurt him to say it. He loved his parents and already missed them and his sister, Jenny, too. But even that couldn’t change what he’d been through. He had begged not to have to go back for the treatments, but his parents were firm: no, you have to do what the doctors say because it’s the best thing there is. Dana Farber is the third best place in the world and it’s right here next door to us. Your only chance is to do what they say. So it wasn’t any use, talking to them. They didn’t understand. He just wanted to be free, to skate, to die without feeling so sick.
So there he was in Houston, skating and making new friends. Every day he felt stronger and better. The boys he met up with – Kris, Kush, Marshall, Pat – had a kind of a clubhouse in a storage locker they had broken into. They had furnished it with some old furniture plucked from the dumpster and, since there wasn’t any electricity, they used candles for light. They told him he could sleep there if he wanted to. During the day they skated all over Houston. At night he often went home with one or another of them and they fed him. A couple of weeks went by. One night, they were over at Pat’s house. Pat’s father was in the living room, watching TV. All of a sudden he called out, “Hey, you guys, get in here. Billy’s on television!” So they all went in to see and there was Billy’s Mom on the screen, crying and saying, “Billy, just call us!”
Billy ran, out the door and onto the street. He put on his sunglasses and put the hood up on his sweatshirt and ran for his life. He found a pay phone and called his mother and told her he was all right but that he wasn’t coming home, not ever, if it meant he had to go back to the hospital. Then he ran again. People started coming to the storage locker, looking for him because the word was out that the boys were hiding him there. So he found another boy to stay with. He stayed hunkered down. Every once in a while, he called home, just to tell them that he loved them.
At home, Billy’s parents, Sue and Bill Best, had been besieged by reporters, following Billy’s story. He continued to call from time to time, never revealing where he was. They didn’t want to tell Billy about the media circus that had pitched its tent on their lawn. They were afraid that would give Billy – such a private boy – one more reason not to come home. Finally, they promised him that if he came home, he would not have to go back to the hospital. Using money donated by a sympathetic observer, Billy flew home from Houston, almost a month after he had left on that Greyhound bus. A visit to Dana Farber revealed that his cancer was worse than it had been before he left. The Bests told reporters that they promised Billy he would not have to resume treatments. They said that they were going to research alternative treatments.
It was terrible, waking up to all those microphones but the exposure had a positive side. People who had toughed it out on the chemo and won the battle had watched Billy’s drama unfold on the television and in the newspapers. They wrote to Billy, telling him to hang in there, it’s worth it. And people who knew about alternative treatments wrote them too, telling them there are other ways. Sue and Bill read all the suggestions and studied the various alternatives. Everyone who wrote maintained that the method they had tried had worked for them, so there was some conviction behind each suggestion. It was all very confusing and hard for them to make a choice. They were also under a lot of pressure. When they told the doctors at Dana Farber that they were going to seek alternatives and stop Billy’s treatments, the hospital reported them as unfit parents to the state’s Department of Social Services and tried to have Billy taken away. This only compounded their sadness. If they forced Billy to go back to Dana Farber, he would run away again. They did not feel like unfit parents. They loved Billy, a Native American boy they had adopted at birth. This chapter in his short life was not what they had expected, not what any parents expect in the life of an otherwise healthy, and in this case, handsome young man.
The Bests were religious and prayed for the solution to come to them. In fact, they always say that prayer had as much to do with Billy’s healing as anything else they tried. So they prayed and they studied. In all the information they were sent, two things kept coming up that sounded reasonable. Both of them were from Canada. One of them was called Essiac, a tea. The other was 714X, which promoted itself as a “nontoxic treatment for cancer and other immune deficiencies.”
While the authorities investigated the possibility of removing Billy from his parent’s home and putting him into foster care so that he could resume treatment at Dana Farber, Billy and his father went to Canada to meet with Gaston Naessens and find out about these intriguing treatments. “I was here alone,” Sue recalls. “I was scared that I might be arrested. Nothing like that had ever happened to me in my life. Since then, we have heard of kids who were forced to take chemo or else the child would be removed.”
The nationwide publicity that surrounded Billy at the time seemed to blow away the state’s desire to get involved with Billy’s case. “I think they would have looked pretty bad and they knew it. But if Billy hadn’t run away, he might have had to stay on the chemo and I wonder where he would be today. That stuff is poison, even the doctors tell you that.”
And so, in January of 1995, Billy began drinking nine ounces of the foul-smelling Essiac tea and injecting himself with 714X every day. He also began eating a diet of whole grains and organic foods. No red meat. No caffeine. The Bests were not a whole grain family – hot dogs and macaroni and cheese had been their daily fare until then. “I wasn’t involved in anything like this, ever,” Sue Best says today. “When Billy was diagnosed, we knew nothing about alternative medicines. I was never the medical kind. I wasn’t much interested in things like that.”
They read everything they could get their hands on about diet and exercise and vitamin therapy. And the entire family continued to pray, which they had been doing ever since he had been diagnosed. Within two and a half months, his cancer was gone.
714X stands for the seventh letter of the alphabet (G) and the 14th letter of the alphabet (N), which are the initials of Gaston Naessens, a Canadian biologist who developed this method of treatment. The “X”, the 24th letter in the alphabet, denotes Naessens’ birth year, 1924. 714X is, basically, a substance derived from camphor, nitrogen and mineral salts. Unlike many medicinals, 714X is injected not intra-muscularly or intravenously but intra-lymphatically – into the lymph system, via a lymph node or ganglion, in the groin. Instead of attacking the tumor, the substance is designed to boost the immune system, which is why it is said to be effective in other immune deficiency diseases such as AIDS and Lou Gehrig’s Disease. Among the many controversies surrounding 714X is the issue of this type of injection. Medical professionals claim it is impossible to inject anything into the lymphatic system. But Billy says it is “easy,” once you know how.
Essiac is an herbal infusion, originally formulated by a Canadian nurse named Rene Caisse in the 1920s from a recipe given to her by an Ojibway shaman. The “tea” contains burdock root, sheep sorrel, slippery elm and Indian rhubarb root, a brew unlike any kind of tea we are familiar with. Even those who swear by its efficacy admit it is vile smelling and difficult to swallow. But many have swallowed. And lived. Like Naissens, Caisse gave her substance a name that bore her likeness. Essiac is Caisse spelled backwards.
Initially dismissed as quackery by mainstream medicine, both 714X and Essiac have established themselves in that gray, slightly murky periphery of mainstream medicine as having had some success, enough to puzzle and intrigue American doctors. Naessens claims his substance has a 75% success rate, with thousands of cures. In her lifetime, Rene Caisse made similar claims, though both of them were arrested at one time or another in connection with this “practice of medicine,” for which neither were authorized.
The business of cancer treatment is shot through with potential fraud because of the position of the buyer. Anyone seeking a cure for their disease is, right out of the gate, in a somewhat desperate situation. In addition, most people seeking help have little or no background in medicine so it is difficult to understand the way the various treatments do work. Those who consent to any kind of treatments, be they traditional or alternative, must take much of what happens to them on faith. Certainly Billy’s logic was not incorrect when he concluded that his Aunt Judy had been made very sick by the treatments she had been given and then she died anyway. Anyone who submits to standard chemotherapy does so because it is the most accepted method of treatment now available. But it’s not guaranteed to succeed. Before undergoing treatments, cancer patients routinely sign disclaimers which not only point out that the treatments may have no affect on their disease but which also acknowledge that the treatment itself can cause illness or death.
What was exceptional about Billy’s remission was the fact that he had received so much publicity. He was one patient among millions until he ran away. Once he became a fugitive, he became something of a celebrity. The question of whatever happened to Billy Best is a broad one that operates on many layers. The fact that his cancer disappeared while using these four elusive elements – Essiac tea, 714X, healthy eating and prayer – made the newspapers once again. Which caused these same desperate people to turn to the Bests for help. A girl who lived in the nearby town of Duxbury came to them, near death.
Her name was Katie Hartley and, like Billy, she had been treated at Dana Farber. She was 8 years old at the time, and, like Billy, Katie is alive today to tell her story, 17 years old and perfectly healthy. These two cases gained enough publicity so that the doctors at Dana Farber, in collaboration with the National Cancer Institute (NCI) began clinical trials of 714X in late 1999. Altogether, they were given the cases of 16 cancer patients who had had success with 714X. The trials were repeated again last summer.
It’s hard to discern what happened with these trials. It is perhaps best summarized by saying it all collapsed into a dispute between Naessens and the NCI, which sounds as if it might be more of a dispute over profit than whether or not the substance is a successful way to treat cancer.
In July of last year, after more than a year of testing and hearings, the National Cancer Institute returned their verdict: they saw no need for further testing on 714X.
“That was frustrating after the long wait,” Sue Best admits. “But I still have hope. It’s the right thing. It should happen and so I feel that eventually it will happen.”
The NCI’s decision was discouraging for Billy, as well, but it hasn’t altered the fact that his life changed dramatically as a result of his decision to run away that day in October ten years ago. The futures of the cancer patients who gather weekly in the basement of St. Joseph the Worker are as tenuous as is anyone’s who suffers from this relentless disease. It’s just that they’ve taken a different path. Billy also frequently gives talks at various conventions where the focus is alternative medicine.
The Bests’work distributing the forbidden Canadian substances continues, sometimes thwarted by customs and other agents. “The boxes are now ripped open at the border, and sometimes they arrive with just a few bottles left in the box. This never used to happen but things are getting tighter now, after 9/11,” Billy says.
These setbacks do not diminish the ultimate satsifaction they find in their work, which came to them so strangely and so unbidden.
Billy is a healthy, handsome man of 26 now. The dark eyes and skin of his Native American heritage give him a natural countenance of wisdom. He moves around from job to job, bartender, ski bum, auto mechanic but his mission in life seems to have been preordained. Recently, I sat with him in the kitchen of his parents’ modest home in Rockland, Massachusetts. While Billy ate a cabbage leaf stuffed with tofu and rice, we talked about how the last ten years had unfolded, at first so fearfully and eventually so unbelievably. Perhaps the most moving experience for him was not his own healing but the healing of Katie Hartley, who came to him in what were supposed to have been the last days of her life. “She could not walk, she had a stomach tube in her, she looked like a skeleton. She had a tumor the size of a grapefruit on her face that they said they could not treat. I thought she was going to die right in front of us. I was like, whoa! So I told her all about what we had done. And her mom was shoving carrot juice and beet juice down that stomach tube and all this organic stuff and putting the Essiac tea down there and giving her shots of 714X. Eight months later, she’s still doing it, and she’s starting back to school and getting better and better. And eventually, they went back to get the scans at Dana Farber. And the tumor was gone. That was about 10 years ago. She’s still fine.”
Ironically, through his own struggle, Billy has found his way. He went from the desperation of those days before he ran away to bravely trying the alternatives to becoming a mentor for many. “All these people were calling up and I was on the phone all the time. Everyone wanted to know what happened to me. I just kept telling people I’d be dead on a beach in California if people hadn’t seen my story and been touched by it and called to share their experiences. So I felt like I needed to pass this along too. This is my purpose in life now.”
And Sue’s as well. “It’s very energizing,” she says. “When you are able to help someone, there’s no money that you could pay me for an experience like that. No sir.”