Testimony: “Cannabis helped my son survive a brain tumor”

Living in a Central European country where Medical Cannabis has not yet been approved, Bob went through the most difficult situation of his life, when he was confronted with the brain tumor of his 8-year-old son, in 2017. This is his story, told in the first people. The names are fictitious to protect their identities.

“My name is Bob and I am the father of 11-year-old Luke.
What I'm going to tell you next may be something you've already read, or maybe not.
I will share with you our journey and all the difficult decisions we had to make as parents after our son was diagnosed with a brain tumor.

It all started in August 2017.
My son Luke, who was 8 years old at the time, started to suffer from headaches once a week, the pains that were so severe that he was crying and vomiting all the time. After her third severe pain, we went to the hospital to see a neurologist. He did some tests and told us that he was fine and that the symptoms were due to some sort of seasonal allergic reaction. However, my wife and I insisted that he be given an MRI (Magnetic Resonance Imaging) and the next day our life changed. I was on MRI with Luke, and when the doctors stopped the scan to give him a contrast injection, I felt something was wrong. A few minutes later, my worst fears came true. As I walked over to my wife, who was holding our 3-year-old son, I didn't know how to tell her that Luke had a brain tumor. Six days later, he underwent surgery in Germany and, thank God, our extraordinary neurosurgeon was able to completely remove the tumor. This was the best outcome and this gave us the best prognosis. However, after the anatomopathological report was released, we had another blow, because the initial expectation was that of a Grade I Ependymoma, but it turned out to be, after all, an anaplastic Grade 3 Ependymoma. journey.

While my wife was in the hospital with Luke, I could barely sleep. I spent the day with them, but after 18 pm I wasn't allowed to stay in the hospital, so I left. It was at these moments that I locked myself in my hotel room and spent the night writing emails and reading, reading a lot. The following week, I slept about two to four hours a night, and I tried to gain an advantage by gathering information about the next steps to take. Every day I would talk to my wife about what I had learned the night before.

We both already knew that the next steps would be radiotherapy and chemotherapy. But what kind for sure, and why, we didn't know at the time. I started to question everything. In the meantime we were released from the hospital and stayed in a hotel 100 meters away. Five days later, I made an appointment with our top pediatric oncologist. The Department of Oncology suggested the standard protocol for brain cancer, which includes chemotherapy and conventional photon radiation. Thank God we did our homework before the oncologist appointment and we were prepared. I then showed him three scientific studies, which tested whether chemotherapy was beneficial for the treatment of Ependymoma or not. The conclusion was that it was not beneficial, despite being still prescribed as a standard protocol. Therefore, we rejected the proposal as well as photon radiation and opted for proton therapy, backed up again by scientific research and the opinions of top pediatric neurosurgeons and oncologists from around the world.

The appointment was scheduled for 10 am. I arrived 20-30 minutes early and waited. In this period of time I saw things that I will never forget. Small children walking down the aisle with their parents, pushing the chemotherapy stand. I watched them and tried to contain the crying, just to not make them sad. She shocked me with their air. I had read about it before, but now I was having the real experience. I can't even find words to describe it, I can't. Looking at those little angels, who should have been playing outside and enjoying their happy childhood… they were fighting for the right to life, for their only dream… to heal and live like other children. This realization was breaking my heart.

So I asked myself: is chemotherapy so harmful, so toxic and basically destroys your body… how can it cure you? It makes you even sicker and possibly kills you before the cancer does. I read somewhere that chemotherapy alone increases the possibility of recurrence and/or, later, the development of a different type of cancer by 20-30%. Radiation therapy adds another 15-20%. So with the standard care we get from the treatment, we have a 40-50% increased chance of getting cancer.

Anyway, at 10 am the Oncologist called me to talk in the consultation room. I wasn't expecting the conversation that followed, to be honest. She showed me a sheet describing the standard protocol: surgery, followed by chemotherapy and photon radiation. I started asking questions about why we should do it and what experience I had of other patients with the same diagnosis. She just told me: “This is the protocol we are going to follow, because there is no other”. In that moment, I realized that she didn't care about my hero. We were just the NEXT case, just another folder on the shelf. I interrupted her and asked her to provide me with evidence that all those treatments were effective and beneficial. I took out of my coat three studies on cases similar to ours, which showed that chemotherapy did not work well with our diagnosis and that it did not provide statistically relevant results, compared to control groups. All scientific studies. She didn't believe what I was saying and got annoyed with me.

At the same time, I got a text from my wife, saying that Luke had passed out in the hotel room and that she was going with him to the hospital immediately. This was the turning point and the moment when my family needed me more than the Oncologist. So I basically told the doctor, “Listen, I've discussed this with my wife and we've decided to reject chemotherapy as an option, based on the scientific data and reports we have. I'm showing you three scientific studies concerning chemotherapy and the fact that it doesn't work. I ask you to show me just one report. One report only and I agree with you. We signed the documents and started chemotherapy immediately.” At that moment, she said to me, “Listen, Bob, I agree with you. But even if there is no evidence of results that fit your diagnosis, I want to attack cancer with everything we have, with an iron fist.”

All I could think of were those kids in the hallway with the “chemo” strapped to their arms or chest. So I wanted to finish the conversation and run to the hospital, not knowing for sure what was going on with Luke. So I said to him: “I reject your protocol! We will not do the “chemo” or the photons. We want proton therapy (something that was not available at that hospital). We signed the documents and I went back to the hospital. Luckily, my son only had a slight breakdown of his vegetative nervous system, due to his extraordinary post-surgical recovery. They spent two more days in the hospital. Then we went to another institution, which provided us with proton therapy. I want to add that we didn't just reject photon therapy. We relied on personal communication with several world-renowned pediatric neurosurgeons around the world. Everyone told me: if you have that chance, choose proton therapy. It is the best radiation therapy option for children. So, six weeks after the surgery, we started proton therapy.

During these weeks of rush and bureaucracy in the preparation for the treatment, I continued to read and research about what we could do to help my little angel and to heal him. I spied on all the internet scams and different therapy options. They were mostly frauds, trying to suck your money, because they know how desperate a person is in such a situation. Everyone made me recommendations for alternative therapies and protocols. I was afraid of rejecting anyone. So I researched them one by one and ended up rejecting them all. I felt helpless at one point. Everything was a scam and lacking any relevant scientific basis. This was the moment I felt desperate, because nothing seemed to work.

A few days later, a friend asked me if I had explored the cannabis oil option. Then others, independently, asked me the same question. I thought, "Well, I've heard so much nonsense lately, why not try one more time?" And that's how it all began. Initially, I started reading and seeing some amazing success stories on the internet. Then I turned to science and scientific research work. For the first time in a while, I saw light at the end of the tunnel. I started calling and emailing questions to a number of people involved in scientific research on cannabis. After nearly a month of reading and researching medical cannabis, we decided to start with the oil. Luke started taking it during radiation therapy, as in various research papers it was said that it could potentiate the effect of standard therapy and make cancer cells more sensitive to radiation.

After the first six months, I decided that we needed to up the cannabis oil protocol and take it to the next level by adding fresh cannabis leaves to their diet. I started going to as many and variety of medical cannabis conferences as possible to gather more data, more research, and to meet the researchers in person. A year later, I was able to also include THCA AND CBDA cannabinoids in our protocol, taking advantage of everything the plant has to offer. So our protocol went from CBD and THC to CBD, CBDA, THC, THCA and fresh cannabis leaf juice. We use different labs to test each batch for our hero and to make sure with 100% accuracy of the exact amount, in milligrams, he should take. In the beginning, we obtained CBD and THC from different suppliers. The problem was that the oil concentrations were always different. Sometimes we had to deal with illegal suppliers, just to get the medicine that Luke needed so much, without knowing for sure what came into our hands, the process by which it was extracted, etc. It would be so much simpler if we could at least have the chance to get the oil from legal labs or suppliers with traceable methods and certifications. Furthermore, even if it were legal, it would be difficult to supply raw material for fresh cannabis leaf juice and CBDA and THCA preparations. Unfortunately, this was not possible.

In my country, anything related to cannabis is illegal and I risked prison. In a millisecond, my decision was clear. My only option was to treat Luke illegally. I started to learn how to grow the medicine and do the whole process myself. I know my medicine from seed to final product. I test the potency of each batch with gas chromatography and we do pathogen research tests on everything. For the past two years, Luke has been taking his self-made medication. Lately, Luke has wanted to participate in growing his own plants and has given them names. Today, we cultivate them together because he insisted on being involved in the process.

Am I doing something wrong? No way. I am proud of what I do and why I do it. For the record, I use cannabis only for medicinal, not recreational, purposes. I just have this bad, permanent feeling of having to hide and cultivate and extract like I'm a criminal. This is not right. It should be legal and accessible to all who need it. We also urgently need qualified professionals for advice. Governments should invest more in medical cannabis research. We already have so much information and research, but we need much more, not for tomorrow, but for today! With our diagnosis, the chances of recurrence during the first year are 60% and decrease over time.

We were hesitant at first about sharing our protocol with our doctor (neurosurgeon) but at some point we decided to go ahead and tell her everything we were doing. We also made scientific reports available to her, as she was not familiar with the subject. Since that day, she started supporting us, seeing the results. The surgery was two and a half years ago, with MRI scans every 3-6 months. What can I say? So far so good. Somehow we got our lives back. Despite everything, our life has changed and we won't have it back the way it was. Whether this is good or not is hard to say, but we learn to enjoy and appreciate every moment. Our hero skis, plays tennis and has won tournaments in his age group. He is one of the best students in his 6th grade class.

We started to support other families in situations similar to ours, sharing information, research and practical advice based on personal experience. We had to cross this desert alone, from scratch. As long as we can show other people some shortcuts on this long journey, without having to go through it in its entirety, as we had to do, we are happy and everything we do makes even more sense. Throughout this process, we have met countless families administering cannabis oil to their children and, almost without exception, they report extraordinary results. Of course this is not a panacea and it doesn't work 100% for everyone, but what does it do in this world?

Last but not least: from our experience, I see three types of path taken by cancer patients:

1 – the traditional way – they believe everything the doctor says, without questioning. They accept all the therapies that traditional medicine has to offer and outright reject alternative therapies;

2 – the alternative way – they believe in the power of nature and in the experience accumulated over thousands of years. At the same time, they totally refuse traditional therapies, as they do not believe in them.

3 – mixed approach – try to obtain the best and most proven methods of traditional and alternative medicines. I admit that we are part of the mixed group. We believe that we have managed to get the best out of therapies and knowledge, both traditional and alternative.

Today we try to live as before and learn to appreciate each day. Our hero is doing very well and, apart from the scar from the surgery on his head, it's impossible to imagine what he's been through. I can only suggest to all families in a similar situation: question and demand answers from your doctors. Do your due diligence and don't stop until you have enough information to make your decision. They must be comfortable with every decision they make. I hope that our story gives strength and energy to everyone who is going through this challenge in life.”

Bob & Luke

“The purpose of our lives is to be happy.” – Dalai Lama