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.

Posted via web from MindiTheMagnificent

Pity Party? Party of, All Of You.

I've been sitting here going on 15 or so minutes.  Trying to force myself into the writing zone.  Something I've been trying to do for the last several days.  Just cannot get there.  This is me, just putting it out there.  Getting it out.  It's going to be random, disjointed......  roll with me, I need to get it out.

It's been just over three weeks since we've been discharged.  I have not been able to find my grove.  It's been day after day of just trying to get-through-the-day.  The first two weeks were physically, mentally and emotionally exhausting.  Gregory was at 15mg Prednisone, twice a day.  Which, for his size, is a lot of steroids.  Every day.  He was cranky, demanding and constantly hungry.  Constantly.  First words out of his mouth and last words before dreamland........  "What is there to eat."  No joke.  Add to that the change in his GVH med from Tacrolimus to Sirolimus.  Sirolimus can raise triglycerides.  Cholesterol.  Which meant I also had to police WHAT went into his mouth.  Add to that the weight gain.  It was a daily battle of how much and what food.  All day long.  Along with hyperhydration.  56-66 ounces a day.  He's roughly 40 pounds.  (18.2 Kg on Monday)  That's so much fluid.  The idea is to keep his kidneys well flushed and healthy.  Get these meds out of his kidneys, fast.  That much fluids means constant diaper changes.  The best way to get the fluids in him, is to run water through his feeding pump, via his G Tube.  24 hours a day.  Which means he needs a change AT LEAST every 3 hours.  Otherwise, he wakes up in a puddle.  Cannot tell you the last time I slept peacefully for eight hours.  Hell, I'd take 4 peaceful hours.  Peaceful being the operative word. 

Add to that the isolation.  Truly isolated, this time around.  Larry came out the first weekend, but then everyone started getting 'the sick".  Including Larry.  Normal seasonal cough/cold stuff.  Of the kids, it was primarily Curtis.  Since Larry and my mom tag team with the sibs AND tag team with us, it meant that neither of them could come out.  Or the sibs, for that matter.  As silly as this may sound, it also meant that I've had to relinquish my grocery shopping.  I've had to rely on mom and Larry to get what we need.   You don't know how hard this simple little thing is for me.  Currently, it's been my only interaction with the outside world.  The only time that I am away from Gregory.  It also is a very personal thing.  I KNOW.  It's only groceries.  Then again, it's GROCERIES.  If we lived in a more urban area, I would gladly order them online and have them delivered.  It's not available to us.  There is something to be said for having particular tastes and having to express those tastes in a list, that someone else then has to look for.  Unfamiliar items.  Sounds trivial, but it's ANOTHER thing I've had to relinquish.  It's temporary.  It is just one more thing that I have no control over.  (No, I really don't need to learn a lesson about giving up control.  Really.  I don't.  This is not another lesson.  I promise.)  

This past Friday I received a phone call from Curtis & AnnMarie's school.  AnnMarie had yakked at school and was waiting in the nurses' room to be picked up.  I couldn't get a hold of Larry, so I called my mom to pick her up.  Which, actually, worked out better for both AnnMarie and Larry.  The kids usually spend Friday and Saturday nights with my mom, anyhow.  After she was settled in at my mom's, I gave them a ring.  To see how she was and if they needed anything.  Larry was bringing Curtis over later.  AnnMarie wanted nothing more than her stuffed sleeping buddy.  Sparkle.  I started to lose it.  Here was my daughter.  My little girl.  My sweet little thing.  She was sick and I couldn't be there for her.  I just couldn't.  Not only that, but I can't.  I. Cannot.  Be.  Around.  Sick.  Period. 

Yes.  Plenty of Bone Marrow Transplant families have sibs and sickness during recovery.  We had an option before us and we chose to take it.  Gregory's greatest chance at health is to avoid sickness.  His marrow is still young.  We really don't know how young, though.  The graft versus host medications suppress his immune system.  So much so, that we are still doing weekly surveillance blood cultures.  (They take samples of his blood to determine if there is an infection in his blood.)  We are still doing surveillance CMV testing.  (CMV is a virus.  Really bad one.  Can be fatal for BMT patients.  He had an positive CMV, just after transplant.  It was treated and he hasn't had a positive, since.)  Yes, we had a seven week admit.  He's had several positive blood cultures.  A few of them were determined to be contaminants.  Through all of this, Gregory has not been "sick".  No coughs, runny nose, sneezing, stomach bugs.  Not even stool or urine bugs.  Nothing.  *knock wood*  The less time he spends in the hospital, the healthier he will be.  Not to mention the whole getting-sick-while-in-the-hospital stuff, too.  Sometimes you can get sicker by being in the hospital, surrounded by all the other sick.  

Every fiber of my existence is to keep Gregory healthy.  It's working.  Except for the graft versus host, his suppressed immune system and the medication side effects, Gregory is so stinking healthy.  Kidney is stellar.  Triglycerides took a small jump a few weeks back, but they have leveled.  Sodium, calcium, protein, albumin, phosphorus, glucose.  Everything looks great.  We made the best decision.  For Gregory.  

Me?  Struggling, for now.  It's just been so long.  My world.  It's a microcosm.  Miniscule.  I have nothing to share that isn't about myself, Gregory or other BMT/Childhood Cancer families.  I get really tired of talking about it.  I yearn for a conversation with someone that has nothing to do with Bone Marrow Transplant, Childhood Cancer or Graft Versus Host.  Even if I could have such a conversation, the elephant would still be in the room.  I want to be interest in politics.  I want to talk about the environment.  I want to find out the latest in local, organic food shopping.  I want to chat about the new stop light going in on our corner.  I want to plan for the kids' spring break.  I want to get ready for upcoming conferences.  I want to have conversations on these topics, as if they were as important to me as bmt/graft-versus-host/childhood cancer is to me now.  I want to be home.  I think all of this would be much easier to get through, if we were HomeHome.  For me.  

We had an option.  We chose door number two.  Gregory and I, living out at the Water Retreat, has been THE BEST OPTION for him.    Without a doubt.  Even if we had been HomeHome, as soon as anyone started showing symptoms of "the sick", we would have high tailed it out here. 

Something happened.  About a month ago, while we were still inpatient.  We had transitioned to our new doc.  We had only been together for about a week.  Things are a little busy.  A comment was made during morning rounds.  At the time, I didn't give it much thought.  That's my M.O., though.  I work really hard to not be reactionary.  I also really hate confrontation.  Our doc, without any warm up, stated that it was time for us to all be together.  Time for Gregory and I to go home.  Time for me to get some relief and assistance.  In my usual fashion, I just accepted the words.  Didn't respond or even really acknowledge the sentiment.  The words did not sit well with me.  I understand where they came from.  At least I think I do.  Unification of the family unit, after all, is the end all be all.  Right?  Regardless of what circumstances might be contributing to decisions.  The doc and I are still learning each other.  We haven't had the time or the opportunity that comes with getting to know each other.  Time hasn't been taken to learn about our family dynamics.  Why we have made the choices we have.  There is nothing that gets me more worked up, than when a judgment is made about me, my kids, my husband.  Quite frankly, any kind of judgment makes my stomach turn.  The only person's skin you live in is your own.  It's as simple as that.  I love debate, conversation, learning.  Judging others is not part of my equation.  I couldn't help but feel like a judgment was made on our decision to not be HomeHome yet.  Which could simply be because we have not had the time to establish any kind of relationship, yet.  I feel the need to get this out in the open with our doc, but with all the respect that I possess.  Any kind of transition is challenging.  Going from three docs to two has been a huge transition.    I get it.  I've experienced it, from their side.  No matter how solid an office is, it's still a transition.

The other piece that has been weighing me down.  It's so simple that I even hesitate to share it, but nothing is simple these days.  Here goes nothing, don't laugh.  If there is clutter and disorganization around me, I am literally paralyzed.  Suffocated.  Stifled.  I cannot function any further than just getting through the day.  We spent seven weeks inpatient between December 23rd and February 15.  Which included all the Christmas stuff and presents that Gregory received while being in the hospital for so long.  By the time we got out of the hospital and back to the Water Retreat, there was the unpacking and getting settled.  Combined with the Steroid Sickness.  Managing him those first two weeks, out patient..........  exhausting.  I finally gave up on the food thing.  While I am watching his caloric intake and fat, I'm not policing it like I was.  It was just too much to manage.  Screw it.  If his Triglycerides go up and he need medication for it, so be it.  It is just not worth the constant battling with a child who is so wacked out.  We did taper his Prednisone a little bit.  About a week ago we went to 15mg AM & 10mg PM.  That small little 5mg drop made a huge difference.  He still wakes up asking about food.  He still falls asleep wanting "curly noodles" (Top Ramen).  It's less intense, though.  Much less intense.  Although the last two days have been intense.  Anyhow, I digress.  Disorganization.  Clutter.  Crazy amounts of it.  The only reason I am able to sit here and write is because I finally tackled Gregory's toys.  They are neatly organized and put in their own place.  It makes it doubly hard 'cause we are not living at HomeHome.  Yes, there it is, AGAIN!   I play this stupid little game with myself.  If I get THIS done, then I can do THAT.  Which means neither gets done and it spirals out of control.  I'm finally getting on top of it and slowly climbing out.  

We also have ants.  My check engine light started blinking on Monday.  Beautiful children have died.  Beautiful children, amazingly, have no evidence of tumors.  Someone close to us had to have an emergency apendectomy.  Gorgeous spring days, followed by rainy and chilly days.  Favorite artists release new albums.  Friends get ready for their last chemo treatment.  I finish my sweater.  Correspondence goes unanswered.  Critters get into my garbage.  (I convince myself it's a large critter and freak out over our safety.)  A good friend gets really sick and can't care for their child.  I snap at Gregory a time or two.  Good friends grieve.  I finally admit that Gregory could use a haircut.  (I still think hair dressers should make house calls.)  Gregory spent 10 minutes outside, on his tricycle.  Sun hat and sun screen.  Medications, food log, fluid log, poo log.  Right now, at this moment, I want to fall asleep.  Only to wake up, the morning of Tuesday, February 24th, 2009 after having spent the previous evening getting Gregory IV fluids at the ER.  Just enough to perk him back up.  Enough to return home and have him recover from the common cold.  Right now, at this moment, that is what I wish for.

Instead, I manage it by keeping a low profile.  Checking out for a bit.  Rebuilding the defenses.  There is an ever present finger on the pulse.  Monitoring.  Waiting for the reserves to replenish.  Checking off another day.  That's all I can do, for now.  It's enough.  Bottom line?  Gregory is doing great.  Induced with medication, but great.  We will not be here forever.  Things will change.  They will never be like they were before, but they will be different.  Better.  Someday.     

Posted via web from MindiTheMagnificent