Up, Down, Inside Out

Yet another sleepless night.  There is no reason for it, either.  At least no reason that I  have any reasonable control over.  Even though I’ve never truly had a blissful night of sleep since we became parents, this is different.  Constantly on the watch.  Watching for the next thing.  Always available for Gregory’s slightest need.  Don’t get me wrong, I do not cater to him nor coddle him.  It’s just a heighten awareness of him. 

This has been a weird week.  Gregory has been fan-freaking-tastic.  Seriously.  I’ve not seen him like this in months.  He is strangely motivated, curious, active.  Acting like any “normal” four year old should.  Busy, busy, busy.  In everything, painting, reading, getting his fluids and remembering he needs to drink, eating really well, standing on the beach and throwing rocks forever (Sunscreen, sun hat and exam gloves included, of course.).  Very verbal and hardly needing his pacifier.  He’s finally starting to articulate his words better and I can see him making an effort to say things correctly.  Correcting himself along the way.  Dressing and undressing himself, not complaining when it’s time for a bath or to brush his teeth.  Behaving exactly like he “should”.  It’s amazing to witness.  It takes  my breath away, too.  I’m not completely trustful of it, though.  He is still on a high dose of steroids and his immunosuppression med.  When his GVH flared in November he was at 13mg prednisone every other day.  He’s currently at 20mg prednisone every other day.  We won’t be down to 13mg until September.  I’m taking this time with joy and caution.  Not knowing what is really lurking under there.  Yet for now, he’s learning, experiencing, exploring.  I’ll take it.

His labs on Monday were stellar.  Hematocrit ~ 40, Platelets ~ 256, White Blood Count ~ 5.1.  Yes, he did have a transfusion a week ago Monday which brought his hematocrit up to 37, but his counts are recovering at a rate that I did not expect.  His oxygen saturation was at 94.  Once again, he is exposed but solid.  So thankful for that.

Dad’s surgery was Monday.  (Triple Bypass)  He is still in ICU but doing as expected.  Another example of one day at a time.

Gregory’s disease, Juvenile Myelomonocytic Leukemia (JMML), is a rare disease.  I know we hear that a lot when it comes to Childhood Cancer.  There is so little information on it that I can’t even accurately say how many cases are diagnosed in a year.  I’ve heard as low as 25 and as high as 50.  That’s not very many.  The point being…….  we JMML families scour the internet for each other.  Eventually we find each other and create a bond.  No two cases are alike.  Every single kid’s experience is unique.  There are two families that have been heavy on my radar.  They are at opposite ends of this beast.  I mentioned Cameron in my last entry.  He had his third BMT recently.  He has engrafted (ANC over 500 for three days in a row.) and his peripheral blood chimerism show that he is 100% donor.  This is amazing news.  I had a chance to talk to mom Tuesday night and we quietly cautiously celebrated.  Acknowledging what great this new is and honoring the unknown road still ahead.

I haven’t mentioned Dylan.  They use FaceBook for updates.  I can’t remember the exact dates of Dylan’s diagnosis and transplant.  Prior to day 80 post transplant they found evidence of JMML.  From that point on he had one complication after another.  He was receiving his chemo for his second transplant this past weekend and his body just couldn’t do it.  Dylan died Monday, May 24th at 12:04AM.  When I first “met” his mom, she and I marveled at how much Gregory and Dylan looked alike.  It’s quite spooky.  Several of the kids that I’ve heard of are fair haired & skinned.  I’ve often wondered if there is something to that. 

Add Gregory’s week, Dad’s surgery, Cameron and Dylan.  Feeling quite Schizophrenic. 

There are many people who just don’t get online social networks.  I’ve learned of two amazing artists this week from my social network.  This is why I LOVE social networks.  First off is Serena Ryder.  Holy cow.  BNL had a show recently, Serena opened for them and a few people have recommended her music.  She is on brilliantly talented woman.  I did find myself wanting a button that said “Pop” that I  could turn down.  At first blush it sounded over processed, I wanted to turn up the “Raw” button.  Then I realized that she is just so stinking good.  She’s from Canada, released a few albums before this one.  I’d love to get my hands on her Canadian releases.  Before this there was a recommendation to check out Ann Ternheim.  She’s a Swede.  Her music has a melancholy feel to it, it’s clean, heartbreakingly written and performed.  These two ladies are worth every penny of that 99 cent per track download.

Beyond excited to get to Seattle.  Can’t wait to see everyone and anxious to see what his tests will reveal.  Aside from the status of his marrow, evidence of disease and percentage of donor, we will be looking at his bone density, his teeth, his growth hormones, his immune system, his GVH.  The steroids cause bone damage.  The chemo and drugs wreak havoc on his forming adult teeth and his bodies ability to produce growth hormone.  He is still immunocomprimised so we won’t get a clear picture of his immune system.  All of this testing probably won’t yield any information that will require action.  It’s simply so we can get an idea of where he’s at and what might be ahead for us.  Kind of a baseline.  In case anyone is wondering, I have no idea when Gregory will be off his meds.  His prednisone taper goes through December and it only goes down to 10mg every other day.  We have no idea if he will have GVH issues as we decrease his prednisone.  One day at a time. 

I’ve run out of steam.  More later, gotta jet.

Posted via web from MindiTheMagnificent


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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