Dancing with the demons.

They’re here.  The knocking gets louder and louder, until I face them.  Look them in the eye and confront them.  Not just for us.  For every one I love.  For every one I’ve met.  For every one I will meet.  For every one I will never meet.  The demons creep.  I let eventually let them have their head and we take a wild ride.  Tonight’s one of those nights.

I’ve always had mixed feelings about major medical intervention.  Never took a yes/no stand, but the idea of major medical intervention always made me pause.  Think about the What, Why, How.  Then we find ourselves thrown full tilt into major medical intervention.  As major as it comes, in my opinion.  The idea that it is possible to destroy your child’s bone marrow.  The substance that creates the life “blood” of their body.  Then infuse cells, selflessly donated by a stranger.  They aren’t even fully developed cells.  They are stem cells.  Blood cells that are grown in the marrow and have not yet decided if they will be red cells, white cells or platelets.  From another living human.  Or, in other cases, through cord blood, that has also been selflessly donated.  These stem cells magically float through the blood stream and mysteriously find their way to your child’s marrow.  They find their way to their new home and get busy, doing what they were created to do.  Except in a different body.  Your child’s body.  Giving birth to a whole new structure of life.  That is major medical intervention.

While advances have been made in the arena of stem cell transplant, it is far from perfected.  We are talking about DNA.  Not too long ago, bone marrow transplant patients were treated through plastic isolation tents.  This was before research had discovered that antibiotics, antivirals, antifungals and immunosupressive drugs were necessary for transplant patients.  I have no idea what the mortality rate was during those dark days.  Mortality rate.  For transplant patients, it’s not just about eliminating the disease.  It’s about creating a healthy environment and sustaining that environment for new cells to call home.  The complexity is mind boggling.  The range of results is endless.  Even with similar circumstances.  One child can have a horrific transplant/just post transplant experience and seemingly walk away, several months later with little evidence.  Once child can struggle for years with major issues.  One child can fly through transplant, only to find evidence of disease at less than 100 days post transplant.  One child can have a rough transplant and struggle with moderate after effects for years.  The thing we all share is the uncertainty of all of this.  Each one of us could struggle with this for the entire life of our children.  Each one of us could recover next year and never look back.  There are no promises, guarantees, warranties, contracts, implied success.  The risk is gigantic.

Yet……… we take it.  When transplant is your only option for a chance at life, you don’t hesitate.  With Gregory’s disease there is no other treatment.  With research, doctors, experts, studies…….. Larry and I walked into this experience prepared to have a two transplant Odyssey.  We are not out of the woods.  We don’t know if/when we ever will be.  Regardless, we are prepared.  I often find myself channeling Princess Leia  “New Bone Marrow, you’re our only hope!”

I belong to a BMT listserve and a GVHD listserve.  These are places where we communicate via email.  One email is sent to all members of the listserve.  They are an incredible resource for advice, support and information.  As with everything, I take it with a grain of salt and most times simply follow along.  These listserve’s are not pediatric specific.  They cover all ages/genders/races/diseases.  We all have different disease, different pre-conditioning and conditioning (chemo/drugs), different life experiences, different ages, different cultures.  The things that I get from them are perspective, how I want to live our life, how I do not want to live our life, what might be ahead for us, how rough we have it, how easy we have it………  No matter how you “go through transplant”, life ceases to exist outside of transplant.  I find myself to be completely unable to socialize, like I once did.  I often find myself very scared of the outside world.  It’s not wonder.  There are so many forces “out there” that can have a fatal effect on our son.  I’m a little gun shy.  I have little to no patience for things like……  are you ready?…. Tiger Woods.  Give me a flippin’ break.  Get a life.  He obviously has one.  Take care of your own.  Which I blame on, you guessed it, the media.  I cannot sit through network TV.  Can’t do it.  Can’t watch the news.  Can’t listen to the news.  I used to be a news fiend.  Used to watch Charlie Rose and listen to Democracy Now! vigilantly.  Can’t do it, right now.  Why?  ‘Cause to me, it simply does not matter.  What matters is sleeping right next to me and the other three are tucked away, sawing logs at HomeHome.  When it comes down to it, that is all that matters to me anymore.  At least for now.  Someday it will come back.  Slowly and with reserve.  It just is not on my radar. 

Guess what, though?  I would do it again.  Without a doubt, without hesitation, without thinking twice.  When we went into this the numbers were 50/50 with transplant.  Other statistics were less than 20%.  No transplant was certain death.  There is no other treatment for JMML.  Period.  None.  This is it, so this is what we do. 

Gregory, and the rest of us, will eventually get to a place where things won’t be so bad.  One of the things I have realized is that it doesn’t matter where he is, compared to other kids his age.  Which takes a ton of confidence on our part and on his, in order to sustain that.  When it comes down to it, it really doesn’t matter.  We are all unique and I think we tend to forget that, from time to time.  We are so busy trying to “do the right/socially correct” thing, that we forget that we DON’T have to be like the people three houses down.  We have been at this long enough to know that being like everyone else, is not important.  It’s more important for Gregory to be Gregory.  No matter what that will look like.  Yes, I grieve for what we have lost.  Today, I’m not.  Tomorrow I might.  Today, I’m not.  Our family is unique, in a very unique way.  So is yours.  Deep down you know it, too.  Embrace it. 

One of the many small triggers that brought this on, is Gregory’s teeth.  During his bout with wretched gut cGVHD, brushing his teeth was a major challenge.  Eventually it was more of a trouble than it was worth.  I just started taking care of them, with vigilance.  I noticed some plaque, dark spots, swollen gums.  I know that Gregory will have major teeth intervention.  While he is on steroids and immunosupresants, he cannot have any dental work.  Not even a routine cleaning.  The last time he had dental work of any kind was March 25th, 2009.  Since we started a fresh round of steroids in January, the earliest that he will be able to have anything will be around January of next year.  Provided we are able to get his current cGVHD under control.  Yes, his teeth is one of the things that I obsess about.  Today I realized why.  It’s two fold.  Your teeth are your smile.  Right?  Enough said.  Number two?  You will love this.  The expense.  Teeth are horrifically expensive to have anything done to.  Stupid.  Once again, worrying about something that is not worth putting my effort into.  ‘Cause we will do what we need to in order to get his teeth fixed.  Period.  It’s not even about the money.  It’s just the fact that it’s one more thing.

I’ve managed to ramble on for several paragraphs with not a one being cohesive.  Just thoughts that have been haunting me.  Words that needed to get out and be shared.  My daily events are so routine.  My world is so small.  I wish I had interesting, uplifting things to write about.  This is it, though.  Leave it or lump it.  ’til later, gotta jet.  My word bank is dry and the demons have been freed.


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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