Monday, June 13, 2011

Tortured Hope

Having a disease that has no real treatment, much less cure, I have chosen the route of finding hope in the things there is some control over. 

I hope for a good medical team, for treatments for each system involved that is effective with the least amount of side effects, and for the wisdom to know how far to let the kids push so we have more good days than bad.  I hope for cool days that allow us the chance to spend time getting some fresh air, for the emotional strength we all need to continue to function, and for maintaining the ability to not take a single day, a single moment for granted.

Ten plus years into this journey, having so little on the horizon in terms of direct mitochondrial treatment or cure, for fear of being brought down by that reality, I have not allowed myself to hope for a real treatment for our family.  I needed to hang on to the things that seemed plausible, at least in the foreseeable future, just for my sanity’s sake.  I pray for the treatment and cure daily……just haven’t allowed myself the option of spending any real time considering hope for it.

I suspect some would consider this faith related, and I suppose in some way it is.  Perhaps, if my faith was stronger, I could hope for that thing that seems so unreachable.  Perhaps I could hope without feeling the pain of disappointment when something doesn’t come to be.  I really don’t know…..I only know how I have managed thus far and have feared allowing myself to “go there”.

A little while back the mito community at large learned that there was a new treatment being tested that could be promising.  However, because the study group was so small, and exclusively a type of mito we did not have, I allowed myself to follow the progress, while tempering my response to it.  The truth is, very little was leaking out, so I could mostly ignore the possibility.  It was not the first time something was thought to have potential, and thus far none of the others have panned out, so it wasn’t something I was getting even a little excited about.

This last week though, we heard that the study was being opened to a broader group of mitochondrial disease patients. The FDA is allowing a faster track since thus far the results have been positive with little to no side effects and mito is thought to effect less than 200,000 people.  This qualifies it for an expedited process during the study phase.

With this news, I realized more than ever, how difficult it is for me to allow that hope to seep in.  I read the news release, read what others were saying about it, and honestly, just sat on it.  I didn’t go and see if I could get more information that might be out there on the interwebs….I just let it sit there for a couple of days, really not sure how I felt about it.  At that point, the qualifications for this new part of the study just weren’t clear, so it was unknown whether we would qualify even with a broadened scope.

Then, I received an email from our mito doc, along with a lot of others in her care.  After a review of the requirements for the study, she felt like we might be interested in participating in the study and shared the contact information needed to proceed. 

I sat there. 

Knowing that I could neither ignore that this was a possibility, nor that I might need to get out of my comfort zone with this whole hope thing. 

Then, and only then, I allowed myself to do some googling to see what I could find about the results of this medication.  There isn’t a ton out there, but what I could find was PROMISING!!  Two groups have been a part of the study…a small group of Leigh’s patients, and an even smaller group of people with LHON (the type of mito associated with the mutations that we have).  Brain changes that are associated with Leigh’s, that were thought to be irreversible, are improving.  Vision loss associated with LHON, also thought to be irreversible, has been improved and even fully restored with this medication.  Wow.

Shoot…..and hooray!!  Something…..something might be out there that could work.  No way to ignore it, or stay away from having some hope.  I had to take a moment to think we might have a real treatment… some point…..and that’s the part that makes me feel tortured.

The reality is, the requirements for this expanded part of the study just were not clear.  Sure enough, after the initial email from our mito doctor, another one came out.  This one explained that they had received further information about the requirements and we should let them know if we were interested and they would review our cases and let us know if the study is something we qualify for. 

In that moment, if I am honest, I was mad at myself.  Mad that I had allowed myself to look into it more…..mad that I now know it COULD make a difference for my children, but may well be out of our reach…..mad that I cannot go back and undo what I have already done…allowing myself to hope.

On some level, I know this is a really messed up way of looking at this.  I really do want to hope for something that could make a real difference for my children.  I am just so scared to hope and have it fall through.

Ultimately, I had allowed myself to “go there” and even though I tried to do it carefully, it really doesn’t work that way.  Once “there”, there isn’t really any going back.

As more information comes out, it does not appear that we would qualify for the broadened scope of the study at this time.  They are, as the logical side of myself knows they should be, limiting this extension to patients that are within 90 days of end of life care.  There is no doubt these are the folks that need to be included in this study.  Further, it appears that only 50 more will be accepted into the study. FIFTY. There are an estimated 60,000 people with this disease…..and only 50 more will get in.  The odds of making it in are so very small, for anyone. 

I WILL feel blessed that we don’t qualify right now.  Not when that’s the criteria that’s being looked at.

I WILL either find a way to not feel so tortured, or I will find a place to put that tortured feeling so it doesn’t consume me.

And I WILL allow myself to feel hopeful….it just has to be tempered with some reality for me to be able to emotionally deal with something being just out of reach for us. Right now. Some day though, maybe, just maybe, we will have the option and you KNOW I will jump at it.

Now we just need time to be on our side.


Houston update is being worked on….posting soon.

Last, but certainly not least……MAVS WIN!!!  We have had a blast as a family watching this amazing team win the NBA Championship!!!

1 comment:

  1. I know exactly what you mean. The last time I really got my hopes up was when KayTar's geneticist called me and told me he had diagnosed her...turns out he was wrong, the positive test was due to an error with her CSF storage. It was crushing to lose that hope of a treatable, diagnosable disease. Since then, I keep my blinders on...don't look too far ahead, and just deal with what we have in front of us at any given moment. Anytime I feel my hopes being raised, I'm like, "Whoa there, Kyla...take it easy."

    Hang in there!


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