Oops, I did it again. Grab a Kleenex.

Word of the Day?  Emotions
Today was filled with them.  They ran the spectrum, too.  Gregory slept for 14 hours.  He finally woke up around 1:30.  Yes, your math is correct.  He fell asleep last night at 11:30.  Our circadian rhythms are so off.  Thankfully I’ve always been able to survive on little sleep. 

Counts:  Platelets ~ 12, Hematocrit ~ 38, ANC ~ 483, Weight ~ 14.2 K

While his ANC is significantly higher there was a mention of this being related to his recent addition of Prednisone.  Don’t quite know the correlation there, but have it on my list of questions for tomorrow.  Gregory was up and playful, today.  Once he woke up, that is.  He spent some time with two physical therapist folks and had a blast.  The second one, Linda, built a fort with him of linens and chairs over his floor mat.  It’s pretty cool.  They backed off on his TPN, he will be receiving it for 18 hours instead of 22.  Which means he might show some interest in food/fluids.  While he won’t be eating 100% at discharge, they like to see him taking something by mouth, routinely, before we can get out of here.  His kidney function is stable.  He has another screeening for the CMV with tomorrows labs.  The test takes 24 hours to complete, so we won’t know the status of replication/annhilation until Friday.  His blood pressure was doing pretty well, until he got out of bed and started playing.  It shot up.  Which tells me that we will be discharged on blood pressure medication.  His activiity level is going to accelerate along with his blood pressure.  Why all the talk of discharge?  One of our providers honestly thinks we may be discharged by the middle of July.  We have our first post transplant Bone Marrow Aspiration next week.  I’m super anxious about THOSE results.  They will give us an idea of how much marrow is the donors and how much is Gregory’s is remaining.  The goal is for it to be 100% donor.  As the date approaches I will be asking for help with this one.  Gregory seems very comfortable, his moods are very “flexible” right now.  Laughing, giggling, frustrated, crying, loving, demanding.  No big surprise.  I would be volitale, too.  Tonight we were talking about doing something and I  mentioned that we would be able to do this when we returned to the Ronald McDonald House.  He immediately broke down in tears.  I’m sure he thought we would be going HomeHome, upon discharge.  He did not want to cuddle or talk about it.  He shouted “Don’t Talk!” when I approached him about it.  He rubbed the tears from his eyes and I asked him about it and he said, as he is rubbing his tears “I’m NOT CRYING!”.  Our first episode with home sickness.  It broke my heart.  It also showed me that he is feeling better.  It’s a false feeling better, though.  Kind of.  He is on a low dose of Prednisone and I have a feeling it will be increasing.  His back, face and scalp have been slowly getting pink/rashy.  As the marrow engrafts, GVH can become stronger.  He is currently receiving platelets daily.  Only because his platelet level is 30 and he has been febrile.  His threshold have been lowered to 10.  Which make me nervous.  Only because back HomeHome the threshold is 20.  The platelets are usually the part that comes in the slowest.  He will be receiving platelet transfusions for some time, yet.  I hope it kicks in a little bit, soon.  I envision every-other-day trips to clinic for labs and platelets.  I was really hoping we would be discharged on a twice weekly schedule.  It will be what it will be.

While I was super prepared for this experience, I have been trying to make peace with alot of stuff in a very short amount of time.  My own emtional roller coaster has more peaks and valleys than I’d like to admit.  Nothing that can be helped, it just needs to be acknowledged and cycled through.  This will certainly be “The Year Mindi Was Nowhere To Be Found”.  I can’t hermit myself away, but I can severly limit my exposure to people.  It won’t be something I will ever regret or begrudge, either.  The price for not doing it is too high.  This will also be the year that we ALL (I hope I can talk Larry into it!) getting a flu shot.  Except Gregory, of course.  I would also like to try and have anti-bacterial gel dispensers in the OffSpring’s classrooms.  Not that this will prevent them from getting sick, it would help to significantly limit their exposure to germs.  Think about this, kids are happy to use gel instead of washing their hands.  Trust me, I know.  I know I’m getting ahead of myself, but these things I can set in motion and get them off my mind.  I need to work through the things that I can, so it leaves me free to truly process the stuff that unexpectedly comes along. 

I’m feeling a little cagey, too.  One thing I know for sure, this feeling is directly tied to my personal cycles.  This feeling will pass in a few days and I will be able to settle down and be a little more peaceful.  Today I have had moments of frustrated rage.  I dont’ often feel this way, but today I did.  It’s not that I want to “go back”, I just want it to be over.  I’m tired of being hyper-vigilant.  I’m tired of having to go down the hall to use the bathroom.  I’m tired of not having any privacy.  I’m tired of watching Gregory sleep.  I’m tired of carrying Gregory AND pulling a HUGE IV pole.  (The thirty minutes that he gets of freedom/day are priceless.  I get to actually squeeze and freely carry him.)  I’m tired of crappy food.  (Yet, I’m truly not hungry.)  I’m tired of researching stuff.  I’m tired.  Tired.  Tired.  It’s the first time in my life that I’ve felt my age.  I knew this experience would age me.  At least for the short term.  I fully expect to bounce back.  ‘Cause that’s just how I roll.  I see the light at the end of the tunnel.  I am simply having a little “Pitty Party For One”.  Which, quiet frankly, I have earned.

These are things that cannot be fixed, aleviated or made easier.  They simply are.  I need to be in these moments, from time to time.  Sometimes I feel like I don’t give enough credit to our Odyssey and what Gregory is going through.  Is it human nature to make light of things?  Or is it our own defense mechanism?  If I tell everyone things are going really great, will I convince myself ot this?  Will my honest language freak people out?  Will I make you uncomfortable?  It’s not a matter of seeking pity.  Trust me.  Pity I don’t need, don’t want.  You can keep it.  There are families that are struggling MORE than we are, there are kids experiencing much HARDER  things than we are.  Yet………..  this is pretty flippin’ hard and I think it deserves to be recognized, honored, respected and witnessed.  On it’s own merit.  Not compared to so-and-so down the hall.  This is Gregory’s Odyssey.  This is our family’s story.

On the heels of THAT, I will say this:  Gregory is a Rock Star.  He is my Hero.  So is Curtis.  So is AnnMarie.  So is Larry.  So is Nana.  So is Papa.  So is every single one on you.  All of you.  The combined energy of everyone who has been touched by Gregory’s Odyssey has bolstered his spirit and ensured a succesful recovery.  Regardless of what it is going to look like, he we will recover from this.    Life will never be the same, but on a day to day basis, it never was the same.  Really.  This is just a little more radical. 

Peace, love, joy & music.  ’til later, gotta jet.


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in anc, days 11-20, engraftment, gvh, steroids. Bookmark the permalink.

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