- S
Update. Thank you to alm that have supported helping Aiden grow. As I mentioned in my last update I am planning a trip to take Lynkon to see his brothers while Aiden continues to fight against this terrible cancer. Please see the new GoFundMe gf.me/u/xnhkht. And thanks again!
In September 2016 I got a call no parent, or person, ever wants to get. I was driving home from town thinking of everything I would need for that weekend at the trailer. While hoping Aiden would be back from the hospital soon enough, with a reasonable enough excuse for his recent symptoms, to come along as well. Only to get a call telling me not to worry but to get to the hospital right away. There was no hiding the horror and fear in that voice, needing me there but also wanting me to make it. From the call to getting to the hospital is a blur of anger and tears.
I later found out that Aiden had a peach sized tumor at the base of his brain stem. It was why he had been losing his balance, falling asleep for hours, throwing up at random times. All things that would or should have screamed THERE IS A PROBLEM, but mid summer, 7-year-old boy who doesn’t stop running around at the trailer, barely eating… it was easy to think he just needed to drink more water, finish his dinner or pay attention to his surroundings. All things I beat myself up over for the months to come.
As we looked at the scans, I could hear the doctor talking but really only heard a few words. Key words that crushed my already fragile spirt. Blood vessels, he said the tumor had developed blood vessels. Which meant it was feeding it self. Surgery, which was clearly inevitable, would be much more dangerous. If brain surgery wasn’t bad enough, trying to cut a tumor out that had its own vasculature system worsened the odds even further. Slip one way brain damage, slip the other blood everywhere and death. Thank God our surgeon was amazing. 20+ hour surgery and Aiden was out.
Fast forward to December 2017. We had gotten home three months previous in September. Just staring to think it might be okay to stop worrying so much. Treatments were over. Physical rehabilitation, in hospital, was over. Trying to find a new normal. At that point we had to go in for follow-up MRIs to make sure things were normal and the cancer wasn’t growing… that scan, we weren’t so lucky.
We had done what they said. We fought for the fancy proton radiation. Took their advice on the chemotherapeutic drugs when we got back. Did what we were supposed to. But cancer doesn’t care. It had metastasized to another part of his brain. At this point I couldn’t let them keep bullying me into making their choices.
Canada is a weird place. Great in so many ways, it also has it faults. With so many cases here and even south of us in states like California people are treating cancer with cannabis. Some as a primary treatment and others as secondary or in conjunction with. I recently met a boy in there that had a brain tumor who is now cancer free! In Canada, even though recently legal our doctors are afraid to even look at the many cases where cannabis has killed cancer. Whether it’s due to fear of scorn or a legitimate lack of knowledge, this should no longer be allowed. Our children deserve better than 5% of cancer research funding.
Back when we had Aiden on chemo, we had stopped giving him CBD oil, the first thing a doctor will authorize a child to use if at all, because it could have an interaction with one of the chemo drugs, vincristine. I didn’t want to but after researching it I agreed the likelihood of an interaction was high. This whole time, from the first mention of cancer through to finding out it had come back. I had a tiny shred of hope, that cannabis could possibly work for Aiden. I had researched it for years, almost got sick of the idea that cannabis could be used for cancer. Then Aiden was diagnosed with medulloblastoma and it all made sense.
One of the projects I had in school lead me to a company that was doing clinical trails on cannabis use with chemo to help treat cancer. They saw improvement in life expectancy. Along with many other people that I’ve now had the honour of talking to and in some cases meeting.
After getting Aiden on this chemotherapeutic and special cannabis oil with a unique ratio of cannabinoids, not a secret just ask, he has had 2 scans that stabilized, 1 where it reduced in size by 25% and a fourth that is stable. This was after having another scan that had shown the cancer had metastasized beyond the point it had in December. Due to the ratio of cannabinoids, not available in Canada, and the desire to have impeccably clean material to make Aiden’s medicine with, I have been making the oil myself.
Anyone that knows me well, knows that asking for help is extremely hard. Not that I can think of anyone that enjoys being in such a predicament. The cost of living when running a home with one income is hard enough. The added cost of a complex care child adds to that significantly. As embarrassing as it is, I have tapped into resources that I didn’t even know where there and over the last 2 years have built up over $30,000 of personal debt trying to give Aiden and his brothers the closest thing to a normal life as possible. The reason I am writing this is to not only ask for help but to say that there is hope. Although there are many times where it doesn’t feel like it. Many time’s when I breakdown and don’t know how I’ll go on. There is always hope. When I saw the scans, read the reports. I knew the cannabis and chemo were working. Was it one or the combination, I don’t know and am not willing to test the theory.
Due to the cost of cannabis, I will be growing Aiden’s cannabis for his oil. I have applied for a license and will be ready to grow when it arrives. Anyone that knows Aiden knows his love of science. He lovers to figure things out. Several years ago while in school I learned about a method of hybridizing plants that would otherwise not be able to produce offspring. I told Aiden about this, protoplast fusion, and he immediately wanted to try it out. Wanting to cross two plants from a kit he had recently been given as a gift, a Venus fly trap and a black “dragon” coleus. Once he found out that we could grow, he told his doctor about this technique and how we were going to try it! We all laughed and decided we should stick to the cannabis plants for now.
So, I am asking for help, and am writing to offer it. If there are other parents out there that have questions. Looking for resources. Needing to talk with another parent that’s been and is going through their own fire. Just ask.
A friend recently told me. “Surely you can feel overwhelmed, but don’t let it stop you from doing what needs to be done.” And as hard as it is some days, for these boys, anything is worth it!
In September 2016 I got a call no parent, or person, ever wants to get. I was driving home from town thinking of everything I would need for that weekend at the trailer. While hoping Aiden would be back from the hospital soon enough, with a reasonable enough excuse for his recent symptoms, to come along as well. Only to get a call telling me not to worry but to get to the hospital right away. There was no hiding the horror and fear in that voice, needing me there but also wanting me to make it. From the call to getting to the hospital is a blur of anger and tears.
I later found out that Aiden had a peach sized tumor at the base of his brain stem. It was why he had been losing his balance, falling asleep for hours, throwing up at random times. All things that would or should have screamed THERE IS A PROBLEM, but mid summer, 7-year-old boy who doesn’t stop running around at the trailer, barely eating… it was easy to think he just needed to drink more water, finish his dinner or pay attention to his surroundings. All things I beat myself up over for the months to come.
As we looked at the scans, I could hear the doctor talking but really only heard a few words. Key words that crushed my already fragile spirt. Blood vessels, he said the tumor had developed blood vessels. Which meant it was feeding it self. Surgery, which was clearly inevitable, would be much more dangerous. If brain surgery wasn’t bad enough, trying to cut a tumor out that had its own vasculature system worsened the odds even further. Slip one way brain damage, slip the other blood everywhere and death. Thank God our surgeon was amazing. 20+ hour surgery and Aiden was out.
Fast forward to December 2017. We had gotten home three months previous in September. Just staring to think it might be okay to stop worrying so much. Treatments were over. Physical rehabilitation, in hospital, was over. Trying to find a new normal. At that point we had to go in for follow-up MRIs to make sure things were normal and the cancer wasn’t growing… that scan, we weren’t so lucky.
We had done what they said. We fought for the fancy proton radiation. Took their advice on the chemotherapeutic drugs when we got back. Did what we were supposed to. But cancer doesn’t care. It had metastasized to another part of his brain. At this point I couldn’t let them keep bullying me into making their choices.
Canada is a weird place. Great in so many ways, it also has it faults. With so many cases here and even south of us in states like California people are treating cancer with cannabis. Some as a primary treatment and others as secondary or in conjunction with. I recently met a boy in there that had a brain tumor who is now cancer free! In Canada, even though recently legal our doctors are afraid to even look at the many cases where cannabis has killed cancer. Whether it’s due to fear of scorn or a legitimate lack of knowledge, this should no longer be allowed. Our children deserve better than 5% of cancer research funding.
Back when we had Aiden on chemo, we had stopped giving him CBD oil, the first thing a doctor will authorize a child to use if at all, because it could have an interaction with one of the chemo drugs, vincristine. I didn’t want to but after researching it I agreed the likelihood of an interaction was high. This whole time, from the first mention of cancer through to finding out it had come back. I had a tiny shred of hope, that cannabis could possibly work for Aiden. I had researched it for years, almost got sick of the idea that cannabis could be used for cancer. Then Aiden was diagnosed with medulloblastoma and it all made sense.
One of the projects I had in school lead me to a company that was doing clinical trails on cannabis use with chemo to help treat cancer. They saw improvement in life expectancy. Along with many other people that I’ve now had the honour of talking to and in some cases meeting.
After getting Aiden on this chemotherapeutic and special cannabis oil with a unique ratio of cannabinoids, not a secret just ask, he has had 2 scans that stabilized, 1 where it reduced in size by 25% and a fourth that is stable. This was after having another scan that had shown the cancer had metastasized beyond the point it had in December. Due to the ratio of cannabinoids, not available in Canada, and the desire to have impeccably clean material to make Aiden’s medicine with, I have been making the oil myself.
Anyone that knows me well, knows that asking for help is extremely hard. Not that I can think of anyone that enjoys being in such a predicament. The cost of living when running a home with one income is hard enough. The added cost of a complex care child adds to that significantly. As embarrassing as it is, I have tapped into resources that I didn’t even know where there and over the last 2 years have built up over $30,000 of personal debt trying to give Aiden and his brothers the closest thing to a normal life as possible. The reason I am writing this is to not only ask for help but to say that there is hope. Although there are many times where it doesn’t feel like it. Many time’s when I breakdown and don’t know how I’ll go on. There is always hope. When I saw the scans, read the reports. I knew the cannabis and chemo were working. Was it one or the combination, I don’t know and am not willing to test the theory.
Due to the cost of cannabis, I will be growing Aiden’s cannabis for his oil. I have applied for a license and will be ready to grow when it arrives. Anyone that knows Aiden knows his love of science. He lovers to figure things out. Several years ago while in school I learned about a method of hybridizing plants that would otherwise not be able to produce offspring. I told Aiden about this, protoplast fusion, and he immediately wanted to try it out. Wanting to cross two plants from a kit he had recently been given as a gift, a Venus fly trap and a black “dragon” coleus. Once he found out that we could grow, he told his doctor about this technique and how we were going to try it! We all laughed and decided we should stick to the cannabis plants for now.
So, I am asking for help, and am writing to offer it. If there are other parents out there that have questions. Looking for resources. Needing to talk with another parent that’s been and is going through their own fire. Just ask.
A friend recently told me. “Surely you can feel overwhelmed, but don’t let it stop you from doing what needs to be done.” And as hard as it is some days, for these boys, anything is worth it!