Partly I don’t feel like putting up more because I’m satisfied that Alex’s story was able to really be told. Partly I feel like the updates aren’t helpful since it’s just repetitive information – Alex is happy, now he’s unhappy, now he’s happy, and so forth.

But honestly, a lot of why I’m done has to do with Alex’s situation just not being one that makes for good updates.

The tincture hasn’t helped him very much since the brain surgery in late January. When it does help it’s only a little bit. We aren’t sure why. Many of his best days recently have been completely unmedicated, in fact. Since the surgery, his mood has been a bit better overall (though the initial all-happy-all-the-time situation didn’t stick around), but whether he’s happy or not, cannabis just hasn’t been doing much for him recently. This makes it tough to want to post any updates because … what do we say? On a good day without medication, it’s great to share, but it has nothing to do with our main struggle. On a bad day where he was medicated, I don’t want to share anything. I could say a lot about Saturday’s visit, but it was a really sad visit, and the tincture did nothing.

What’s worse is that we got a high-CBD oil donated from a local follower of Alex’s story (he said to refer to him as “Genesis”). We were very hopeful at first, but after giving it to Alex on two separate occasions, he was visibly uncomfortable and even unhappy. We gave it a minimum of two and a half hours both times and the results were basically the same: Alex was worse off after the dose than before. Since those doses we have only given it once more, and a very small amount (and it still didn’t seem to have any effect).

I feel like his story has done the best we could have hoped. We opened a few eyes to the fact that cannabis needs WAY more research. Children like Alex can be helped, but it’s almost impossible when it’s such a huge guessing game and the medical laws make it so absurdly difficult to try out different strains and get a regular dose figured out. Prohibition hurts children in his situation, and while cannabis clearly isn’t an easy cure-all, it’s got the most potential for helping deal with rage and pain.

I more or less said this during my interview with Russ Belville. I feel like there’s a strain and/or method of dosing that could work wonders for Alex, but I don’t really have much faith anymore that we’ll find it.

Alex’s story doesn’t have a happy ending right now, and I just don’t want to keep saying the same things over and over again about our inability to figure out what’s right for the kid, and generally my feeling that I failed him, that I wasn’t strong enough to keep him home or smart enough to figure out how to fix the situation. People have asked why we feel the need to defend our very personal and painful decision to place Alex outside the home. Why do we feel that we have to justify it? Because we have to remind ourselves that it was for the best. Because some days we just feel like shitty parents. Because a part of me will always believe that what we did was unfathomable, cruel, unfair, and inhuman.

We’ll keep doing the best we can, and we’ll keep trying different strains and dosing and delivery methods. I might come back to post very significant changes or particularly important activism information. Who knows, maybe one day the story will have a happy ending. But for now, I just need to focus on my family and not worry about telling the story.

Of course, he’s still having to be wrapped up all the time. The video I posted recently still shows a more easygoing version of Alex than what we’re seeing lately. He’s super happy, but seems to need his security items a lot more.

We’ve also done another interview, this time for a TV station in Eugene. Honestly, it didn’t give us as good a vibe as the interview for KPTV, but I am not sure why. Maybe too much recent stress, maybe the weirdness of Alex’s recent mood, maybe the fact that, until Alex recovers, everything just feels a bit less stable than usual. I just hope they can do a good job editing so we don’t look as weird as we felt.

There’s another interview coming up that I’m excited about. It isn’t with a mainstream media outlet, so it’s more of a “preaching to the choir” situation, but it’s with somebody I’ve wanted to speak with since 2010 sometime. More on that when it’s done.

Speaking of mainstream media, they seem disinterested in the story now. They want something super sensational, and we just don’t have it. Alex isn’t cured, cannabis hasn’t brought him home, we’re not users ourselves, and so on. There’s nothing that really pisses anybody off when they see Alex’s situation. The KPTV poll showed that 95% of those who watched the story agreed that in Alex’s case, using cannabis was something the viewer considered a good idea. I think CNN and others were hoping for something more controversial, or they wanted to hear us make an outlandish claim or something. When they hear us tell them the simple facts, they stop showing interest. Cannabis helps Alex, and by a noticeable amount, but that’s all it does. We’re hoping with the right strain and regular dosing, it’ll help more. It’s absolutely ridiculous that he can’t get it regularly. That’s all there is to it.

Important action item!: Support the new measure to end federal prohibition! Visit that link, click “Support”, put in some basic information, and your elected member of congress will be notified that you support HR 499. (Obviously this is only good for U.S. citizens) The more support it gets, the more pressure congress will have to act. As far as I can tell, this bill does not legalize cannabis – it simply takes the federal government out of the role of enforcement, giving them the same general power they currently have over alcohol. This isn’t ideal, but it leaves it to states to decide what to do about cannabis. In Oregon, we’d be able to get a real prescription for Alex. In Oklahoma, they could keep it completely illegal for however long they liked. In Colorado and Washington, licensed stores could sell it to adults without fear of federal intervention.

I’ll try to keep updates coming, but things are very busy

Simple: recreational use just doesn’t matter. If somebody really and truly wastes their life feeding an addiction all day every day, that’s up to them, and chances are they’re already doing it. Maybe with illegal pot, maybe with legal alternatives like alcohol. Maybe with something totally unrelated like video games, internet porn, or whatever. But pot itself isn’t the problem with people like this – it’s about as addictive as caffeine. Only a handful of people will actually abuse pot to the point of it affecting their daily lives.

And heck, I’d rather see a bunch of people throwing their lives away to pot than alcohol. At least the high folks are fairly safe to be around.

Additionally, in places where cannabis has been legalized or decriminalized, use hasn’t skyrocketed. Depending on your source, you can find “proof” that use has gone up or that it’s gone down, but no studies even hint that the more 420-friendly nations have had concerning societal problems due to cannabis being more available and accepted.

So if we accept that recreational use is no big deal, then we still have one question: why not just be happy with medical cannabis laws?

Easy answers:

• The federal government is full of SHIT on this issue and won’t allow cannabis to be rescheduled, so medical laws are still at odds with the federal government – which means places like Alex’s home can cite federal law to avoid dosing a person who could truly benefit.
• Along the same lines, the government will push fake therapies on us like Marinol: a synthetic, pure THC pill which costs MORE than black-market cannabis, and lacks CBD, CBN, and other extremely beneficial cannabinoids! THC by itself is just unpleasant from what I’ve heard, and even the super-high-THC strains of cannabis still have some amount of the other cannabinoids. To put it another way, if nature offers us the whole plant, the government has no right to try and push synthetics that only have one small piece of that plant unless very clear and obvious evidence shows the other components are dangerous. (So far, the only cannabinoid anybody is actually afraid of is THC, and this plant has been with us since the dawn of man)
• Medical cannabis laws have been considered a joke by so many that some states are really cracking down – deciding who is “sick enough” to get medical cannabis. Even here in Oregon, we couldn’t have gotten Alex on the OMMP (Oregon Medical Marijuana Program) without his seizure disorder. Intense self-injurious behaviors wouldn’t be enough.
• In states where cannabis is now legal, a person in need can get a small amount of cannabis from a friend (or in CO grow their own) and try it THAT VERY DAY. We didn’t have that option – it took weeks to get an appointment, get approval from the doctor, and get a dose to try out. It’s impossible to say for sure, but we feel those weeks could have made a huge difference in terms of figuring out the right strain and dosing if we’d had better options like somebody in CO might have.
• We’ve given the government time to accept medical use, and they keep saying, “hell no”. Full legalization in CO and WA has forced a new conversation to take place, and the more states that force this conversation, the more likely kids like Alex will have a new option.

So whether it’s 2014 or 2016, if you live in a state that puts legalization on the ballot, please remember that legalizing can be of tremendous value to medical users, especially in states where medical laws are jumbled and confusing, or where patients are left with almost no guidance on the issue.

And for the skeptics: you pay for a pee test and I’ll take it. A few people somehow actually think Alex’s story is a front to get me high. It’s appalling, but I guess that’s what happens with nearly a century of propaganda against cannabis.

We are all very tired, and have a ton to do, so there isn’t much else to say about what’s been going on recently.

I’ve added a new video to the videos page to show a more typical representation of how cannabis helps Alex. The dramatic difference we posted a long time ago was posted to show the potential and to show how amazing cannabis might be if we could get the right dose figured out and get it to him regularly. Unfortunately, it’s also made a lot of people think cannabis cured Alex of his rage. And, to be fair, when we first took that video, we thought it was going to cure his rage. It wasn’t until we found we couldn’t get a consistent result that we started paying closer attention and seeing that cannabis usually helps, but the effect is more like a two-point drop on his “rage-meter”, if we measured it on a scale of 1 to 10. In order to avoid explaining it again and again, we put together a little video a couple weeks back:

Alex post-MMJ, January 2013 from Dad on Vimeo.

Is it a miracle plant that fixes everything? No. But it helps more often than not, and no medication we’ve tried has been able to do so without putting Alex in a zombie-like state (which cannabis does not do).

First, a huge thanks to everybody who has given us support. Maybe we should have set up a Facebook page a while ago (see Alex’s story on Facebook if you haven’t already), because the support there is tremendous, and it’s a bit easier to respond to folks there than on this blog. It also is much rarer for Facebook to crash compared to the server running the blog. Anyway, thanks so much – the support we’ve gotten has been HUGE.

Here are some highlights:

• We’re getting new high-CBD clones tomorrow which should make for much more effective medicine for Alex
• We’re going to be giving RSO (Rick Simpson Oil) another shot, as somebody locally is offering us a donation
• Our facebook page has nearly 2300 “likes”, and so far I believe I’ve seen only one person suggest that cannabis might have concerning side-effects
• Multiple parents in Oregon and elsewhere have asked for advice in case their child needs cannabis – people with similar situations to us, who, like us, never realized cannabis was an option

So on to Alex.

We got up at 5am on Tuesday, waited forever for surgery due to what I’ll politely call “communications issues”, and it was about 2:00pm before Alex entered surgery. We finally got Alex into the PICU around 6:00pm, and he was out of it until around 11:00pm… but from that point on he was awake and trying to smack himself all night long. A combination of factors made that night downright awful: Karen (Mom) had to go back to the hotel to care for our baby girl, the hospital didn’t have a sitter ready that night, and Alex’s group home didn’t have anybody available yet to watch over him. It ended up being up to me to stay with him all night, keeping him safe. I was there until 7:30am mostly alone, other than the night nurse who was kind enough to give me breaks now and again for food and such.

The rest of the week went a lot better. We got a full-time hospital sitter in addition to dedicated, well-rested staff from his group home, ensuring that no single person was going to be exhausted and without breaks. Alex was hating being cooped up, but he got better each day.

Friday we left so grandma could go back home. She had been with us for over a week and a half helping out with Alex’s brother, but she needed to get back home, so we had to cut our visit with Alex a bit short. Honestly, I am glad to have had a chance to rest after such a crazy week, but it’s still tough to leave the kid without his family

So tonight we go back up and spend more time with Alex. Tomorrow he should be leaving the hospital, and we should be coming back home again, but this time with the new plants I mentioned above.

Here’s hoping all goes well and when the new plants are able to be re-cloned and harvested (which is still a long ways away as I understand it), we’ll have a medicine that makes an even bigger difference to Alex!

Also, this site is going to stay up, but I might slowly migrate to using the Facebook version of Alex’s story for all messages. I think Facebook is a lot easier for quick updates, but it’s not nearly as handy for bigger messages or general information pages.

I don’t know if we’ll just ditch the blog entirely or not. Facebook could cut down on maintenance, make quick updates a bit easier, make discussions easier (no logins or spam issues), and so forth. I don’t want there to be two places to go for information, so I’m not really sure what we’ll see in the coming weeks. With the surgery and everything (next week), things will be too crazy to do much.

A brief update, though – yesterday I saw Alex for a while. When I arrived, he was raging. When I gave him the tincture, he calmed down immediately. This doesn’t always happen, and certainly not predictably. And I know it can’t hit him that fast. But maybe it helped him by way of our ritual simply reminding him he was in for a somewhat calm evening. Every time I visit now, I try to do the exact same thing right off the bat: take him to the car, give the Dixie Botanicals CBD extract, give the high-THC tincture, go for a drive. We don’t know how much it’ll help, but we know that it usually helps a little, and sometimes it helps a whole bunch. Although he can’t say so, I’m betting he’s aware of the connection.

It’s impossible to prove that either tincture made a difference, but he sure changed his mood abruptly, and the happiness stuck around for the duration of my visit. Whatever the reason, it was a great visit.

Anyway, here’s hoping the story gets aired this time. The reporter put us at ease right away, asking us very informal off-the-record questions, and questioned me for a half hour or so about more in-depth Alex-related stuff. There were two “hard questions”, but I think my responses will help people understand the “why” behind our decisions.

And I was very honest about everything. I didn’t try to make cannabis out to be a miracle cure, because while we know it helps, we don’t know if it could ever bring him home, replace all of his other meds, etc. We know it’s a good option, especially for his rage, and super-especially if we can get a more CBD-rich strain. But we don’t know if it will bring his rage from a 9 to an 8 or from a 9 all the way down to a 1. I don’t like having to admit that it might only help a little, but we simply don’t know for sure. The only thing I can say for certain is that it helps at least a little bit, and gives him more happiness in an otherwise very shitty situation.

I also tried to explain why long-term complications of cannabis don’t worry me, but I think I didn’t get that out clearly enough. So if you are curious, here’s the rationale:

• Cannabis cannot kill no matter how much you take – death from even mega doses of pure THC is ridiculously rare.
• Alex’s other medications have horrible side-effects, (two included death: Lamictal and Amitriptyline) and most can cause major problems if too much is taken.
• Long-term effects on the developing brain for other meds are either unknown or known and horrible. Cannabis long-term effects being unknown isn’t scary given what he’s had to deal with, assuming we can replace meds (which we think likely if we could get a regular dose)
• Cannabis has been around for thousands of years and we still “don’t know” long-term effects? This leads me to consider the long-term dangers as either non-existent or else very mild.

We’ll see how things look in the final edit, of course (and we still don’t know if/when it’ll air), but I feel pretty good about the interview.

One was from Noelle Crombie who published a biased, scare-tactic-laden story about medical marijuana and children. On the one hand, I am glad I didn’t do that interview. On the other, any exposure shows even more people that there are pretty normal folks considering cannabis as a last resort when conventional medicine fails… even for children. Either way, I was very disappointed in that kind of reporting, and I’m worried as hell about doing an interview with this kind of “media climate”.

Another interview was offered a while ago, but the reporter ran into something that kept her from following up… but when the OregonLive article showed up, she contacted me within a day or two to re-offer an interview, stating that “there continues to be a lot of misinformation about its effectiveness wrth [sic] children.” She could be trying to smear Alex’s story, enticing me in by acting like a supporter… but it’s probably worth the risk either way, because again, the more people who share stories like Alex’s, the less “scary” it becomes, especially to parents in horrible situations like ours.

The third interview was canceled about two days after it was offered. I’d been really worried at first, as it was a Fox News program, but now I’m actually kind of unhappy it was canceled. Even if it were spun to hell, it was going to be live (no editing to misquote us), and with a fairly sane host (i.e., not Bill O’Rielly).

Hopefully whatever happens, more people get exposed to the fact that cannabis isn’t an evil thing, but its prohibition can be.

So naturally, Alex’s brain surgery and OMMP situation have to go to hell next.

The brain surgery is no surprise, but now it’s real. We have a scheduled appointment for the prep work as well as the surgery itself. We knew it was likely. Alex got really sick not too long ago, and it was due to the one medication that could have prevented brain surgery. (I mentioned Alex’s Sirolimus issues in July)

This wasn’t unexpected, but somehow I was holding out hope we could find some other option. Brain surgery just sounds awful for a non-verbal child who already beats himself up too much.

On top of this, we’re having some trouble with the OMMP process. I might get into more details later, but right now I’m just hoping there have been some miscommunications or something. The short version of the story is that Alex could lose his OMMP card soon, through no fault of ours.