Happily ever after? Certainly.

Thursday, July 23: Platelets ~ 100, Hematocrit ~ 25, ANC ~ 1709, Weight ~ 13.2
Friday, July 24:  Platelets ~ 123, Hematocrit ~ 26, ANC ~ 1307, Weight ~ 13.1

I have attempted to make this entry several times, today.  Meanwhile, every time I have a moment, I am composing more.  Journaling in my brain.  The best words are still in there.  I wish I could transcribe my random/quiet brain diatribes.

We have a good nightime sleep routine in place.  I  hate drugging him like we are, but he is resting.  This mornings 3:00am bladder spasms/pain/itching episode was not as intense and we acted quickly enough to get it under control within like 45 minutes.  He had an absolutely great day today.  Papa showed up with real tools aplenty, a table top wind up clock and a car stereo.  Why the clock and stereo?  If you have tools, you need somehting to take apart and reassemble!  Brilliant.  How many four year olds have a ratchet set, screw driver set, pliers……?  He is in seventh heaven.  Engineer?  Surgeon?  Wrench Monkey?  

Gregory is still eating next to nothing.  Same with fluids.  Not unexpected.  Due to his chemo regemine, his body is wasting Magnesium.  Something we all need.  This is also expected and easily remedied.  You cannot give it orally, it causes diarhea.  Hence, Milk of Magnesia.  He has been receiving his Magnesium via IV, as a bolus, over a two hour period, beginning at 8:00 at night.  Labs are drawn at 4:00 in the morning.  Well, his levels have been good.  Until we switched to oral Tacrolimus.  Twice a week we check his Tacro levels.  There is a targeted level for Tacro.  You cannot have too much or not enough.  It needs to be just right.  In order to do this his level needs to be check at the “Trough”.  Which is the lowest level of Tacro in his system.  Which means that his labs need to be drawn right before a dose.  His dosage is at 8:00am, 4:00pm and 12:00pm.  Labs are routinely drawn at 4:00am.  On his Tacro level days we draw labs right before his 8:00 dose.  Four hours later than normal.  Now the point of all this explanation………..  His magnesium levels at the 8:00 draw are low.  The 4:00am draw is too close to his dose to get an accurate level of Magnesium.  Thankfully it was caught.  They raised his Magnesium bolus.  He is now receiving a bag of Magnesium, IV, 10ml/hour for 10 hours.  Crazy.  I have no idea how long this will go on.  Which means another IV med for out-patient.  Well, a longer dosage.  Potentially. 

We are on a Prednisone taper.  Gregory’s temp has been fluctuating by a good degree.  He is usually around 36.2C (97F).  Which may seem low, but it is where he likes to be.  He has been going to around 37.3 C (99.2F).  Not much a fluctuation.  Except…..  The prednisone masks fevers.  He also has been having stomach cramps.  His hematocrit took a four point drop in two days.  His stools are getting looser and more frequent.  Add this all up and my gut (ha, ha) is telling me he has Gut Graft Versus Host (GVH).  I could also be totally off base and just hoping that that is what it means.  Gregory needs a litlle bit of GVH.  Why?  He needs some Graft Versus Leukemia (GVL) 

*from WIKI JMML entry*

– Graft versus leukemia: Graft versus leukemia has been shown many times to play an important role in curing JMML, and it is usually evidenced in a child after bone marrow transplant through some amount of acute or chronic Graft Versus Host Disease (GVHD). Evidence of either acute or chronic GVHD is linked to a lower relapse rate in JMML. Careful management of immunosuppressant drugs for control of GVHD is essential in JMML; importantly, children who receive less of this prophylaxis have a lower relapse rate. After bone marrow transplant, reducing ongoing immunosuppressive therapy has worked successfully to reverse the course of a bone marrow with a dropping donor percentage and to prevent a relapse.

So.  While it would totally suck to have to deal with GVH, I am still hoping for SOME.  Just a little bit.  Just enough to get the GVL effect.  Please.

My very tired, exhausted, sleep deprived brain did  receive a small reprieve, today.  A fellow caretaker and I (*waves madly to Chuck*) went off campus for Fermented Beverages and Happy Hour priced grub.  It was so great to have decent food.  So yummy.  Thanks, my friend!!

Huge request for tonight……..  A friend needs blessing, prayer, karma, juju…..  Mighty Maddy had a transplant for AML.  At their 80 day work-up they discovered “residual disease” and she will very likely need another transplant.  Mom, Dad, Maddy and the sibs need some positive energy.  If you can spare some, please send it their way.  *Susan!  I think of you guys EVERY  DAY.  Several times a day.  My heart is heavy for you, but filled with love and hope.*


Here’s the deal.  These thoughts have been racing through my brain.  Another parent and I  discussed it, too.  I’ve been thinking about the idea of “Endings”.  When will this end?  My emotions on this topic change from moment to moment.  Gregory’s Odyssey with Juvenile Myelomonocytic Leukemia will never have a clean little “The End”.  We will never be able to “put this behind us”.  While this is possibly the biggest thing we will ever face, (I sure hope so.) it is just one of many struggles that we all face.  His just happens to be so extremely, flippin’ GINORMOUS.  We are so obsessed with “Happily Ever After” that it’s the endings that we, usually, only care about.  Yes, this is HARD.  I have to constanly remind myself that no matter HOW hard it gets, it could be harder.  Yes, there are families that have lesser conditions/treatment plans.  I find myself wishing things were different.  Not all the time.  Just in those deep, dark moments.  I feel like I need to allow myself to BE in those moments.  From time to time.  More often than not, they are quickly followed by rays of sunshine.  Bright moments when Gregory’s spirit comes shining through.  I don’t rally at the sky and scream for justice.  I don’t believe in that.  I don’t think we have been “done wrong”.  I don’t wonder “Why us?”.  If i did, I would have to follow it with “Why them?”.  This is just a really freaky thing that we are going through.  Will we live with it forever?  Yes.  Will it get better?  Yes.  Can it get worse?  Hell yes, it could.  It’s about taking it one moment at a time and living IN that moment.  Allowing myself to BE there but not to STAY there.  Things Can Only Get Better.  Right?  Eventually, they usually do.  At least THAT is what I’m hanging my hat on.

An old Notes From The Universe:
Mindi, isn’t it nice to know that you haven’t yet laughed, all that you’ll laugh? That you haven’t yet met, some of your very best friends? And that you haven’t yet dreamed, all that you’ll manifest?

That all bridges will be mended? That all sadness will be healed? And that life never ends?
That all of your challenges will be won? That all of your triumphs will be shared? And that the difference you’ll make, has already begun?

Well, it is for me, because I also know that if you don’t see these things yet, you will.

Could it get any better?
    The Universe

About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in anc, bk virus, days 41-50, gvh, Notes From The Universe, steroids, this guarded heart. Bookmark the permalink.

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