Not Giving Up

Matt and I are overwhelmed by all the support we’ve received from you after my last post.  So many of you offered to connect us with people you know in Denver, advice on where to live, and asked the very important question, what can be done to change this so every child who needs it is able to access medical marijuana?  It’s an amazing feeling to have you all behind us. It affirms that we are doing the right thing for June.

Some of you have also asked what led us to this decision, and rightly so.  I haven’t written for a long time and then all of the sudden I post that we are moving to Colorado to treat June with medical marijuana. That’s a big jump!  Well, it’s been a long time coming and it was a series of several events that led us to this conclusion.

I started following medical marijuana to treat intractable epilepsy in children about a year ago when another family I know from St. Louis told us they were moving to Denver to start their daughter on Charlotte’s Web to treat her seizures that are similar to June’s.  Her daughter is several years older than June, and they have been so helpful to our family in navigating this new world we find ourselves in.  Around that time, a story in the Washington Post came out about how medical marijuana was helping a lot of children just like June.  This was also when June’s seizures had stopped temporarily, so I was paying attention, but I wasn’t jumping through hoops to get the medicine like I am now.

In August, June’s seizures came back so I started researching it more.  I talked to her doctors about it, but they dismissed the claims that it was a viable option.  What pushed us over the edge was what happened during a scary event in December.  I accidentally mixed June’s medicines up, and I gave her 4 times the amount of one medicine thinking it was another. I realized the mistake immediately and called 911.  June was okay, but it was a frightening experience. Matt and I began to feel fed up. At that time June was on six different medicines that we gave her two or three times a day and most of them weren’t doing anything.  It’s easy to get them mixed up, and I did.  I was so scared as I held June in the ambulance on my way to the ER just praying June wouldn’t die from an accidental overdose. That’s when we decided to look into moving.

Finally, we made our definitive decision after June’s neurologists suggested we retry medicine June has already tried and failed. ‘You’ve got to be kidding me,’ I thought, ‘why?! why would we do that?!”  I said I wanted to try something new that could stop her seizures, and they told me their goal was to make June as comfortable as possible but controlling her seizures was unlikely. I just don’t understand how they can say that when CBD is an option. Before we give up, shouldn’t we try everything?  And so we began the process of moving to Colorado to try a different treatment instead of one that did not work well.

I’ve learned that no one cares about your sick loved ones as much as you do.  I used to think when people got sick, a team of doctors sat in a room wracking their brain about the causes and not stopping until they were able to treat the patient. I just haven’t found that to be true. I think they did in the beginning, but I don’t get that sense anymore. At some point you have to choose the direction that is right for you and your family because just like June,

we aren’t giving up.