High Hopes

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It has been a week since we started having success controlling Lydia’s seizures with cannabis oil. Her worst day was the first, and even that was only 17 seizures – considerably less than her typical 60 seizures per day. Her best day last week she had 3. I still almost can’t believe the number. I keep looking at my grim notes from the last couple years, rereading the weekly tally that I have diligently recorded since the beginning. The worst weeks she was having over a hundred daily seizures. Her best weeks she was still having around 55. I can’t believe this is working, that cannabis oil has really been the answer. I almost don’t dare breathe on her I am so afraid it is a bubble I am dreaming, a fluke, a momentary quirk. I mean, I kinda thought there was a chance that cannabis might help, one of those high CBD strains you hear about, but after we’d tried a dozen different strains and the seizures didn’t respond…I lost hope.

Then came “Cohort H.” I don’t know if any of Troy’s other patients have come this far down the alphabet (he had us start with Cohort A). Or if whatever is in this batch of oil would help anyone but Lydia. She’s an outlier in every way. Nothing has shown up in her genetic tests, she matches no known illness, she has no diagnosis. Limbo. Adrift in space.

Cohort H. From a group called “High Hopes.” That’s all I know. Our marijuana miracle. And the almost otherworldly generosity of a mad genius named Troy who wasn’t surprised at all that cannabis oil works for her, and believed it was just a matter of finding the right strain…

There are a million questions and challenges on the horizon. How are her doctors going to react? Our insurance? Medicaid? We are in Oregon, we are legal now, but laws change. Then there are other questions about how long this will work for her. Will she build a tolerance? What do we do if the grower of this particular strain, grown in this particular way, decides to quit? (Troy is not a grower). What if they can’t afford to keep going and closes MX:BIOTECH? (This is going to be one hell of a cause to fundraise for!) And, oh my, how are we going to fly anywhere ever again? How will we bring her medicine? To England? Will she ever get to see her family over there?

But I’m so willing to fight all those battles and more. Because holy cow cannabis oil is working for our daughter.

In the beginning Lydia slept so much the first part of the week it wasn’t clear if the oil was working or she was just sleeping through her seizures. The oil seemed too strong for her. I diluted and diluted. The optimum amount seems to be 99.5% just coconut oil, with the cannabis oil only 0.5% of the mixture. And she only needs one drop every couple hours. One drop.

On top of all this, Lydia has already made some developments that are blowing my mind. In the last few days, Lydia’s alertness has increased. Her head seems to be moving around more. She looks from side-to-side, and up-and-down. She seems to be clearly looking at things more often, looking at our faces more. And she’s really talkative. It is a noise of complaint, a moan for her bottle that sounds like a deep meow. She didn’t make that noise before. It’s like she’s waking up.

 

Hope is the thing with Feathers…By Emily Dickinson

“Hope” is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all –

And sweetest – in the Gale – is heard –

And sore must be the storm –

That could abash the little Bird

That kept so many warm –

I’ve heard it in the chillest land –

And on the strangest Sea –

Yet – never – in Extremity,

It asked a crumb – of me.

 

 

 

 

 

 

 

 

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