Time is on my side. Says who?

This week has been so HARD.  So many things happening.  Things of which, I have no control or say in.  Sounds like life, doesn’t it? 


This is my little pity party.  Please play along.  Thank you.  You would think that this part would be the easiest.  It’s not.  It’s just as challenging as all the rest, if not more.  Gregory and I have nothing but time, these days.  The daylight hours are far too short and I sleep far to little.  Noting but time to think.  Time to worry.  Time to contemplate.  Time to wonder.  Time to greive. Time to imagine.  There are so many families, families living with Childhood Cancer (Aplastic Anemia, too.) that are having such a rough time.  Gregory is OK, but could be so much better.  I’ve said it before, no matter what he COULD be experiencing, the reality isn’t any easier. 


I knew we would be having peaks and valleys.  Living it is another story.  His GI Graft Versus Host is really giving him a hard time.  We started his B&B (Budesonide & Beclomethason.  Topical steroids) last Friday.  The only relief he has received is that he has less gas and no more stomach cramps.  He still has diarrhea (several times a day), is nauseated, doesn’t have an appetite and now he is having breakdown in the diaper area.  Enough that his sores started to open up and bleed, today.  Which is not good.  An open wound in that area is ripe for infection.  It hurts so bad to change him that I’ve been too lenient with his diaper care.  Today I had to apply the smackdown and tell him how it was going to be done.  He does have a little bit of an appetite, but I’m afraid to let him eat anything.  Afraid that it will irritate him more and cause him more pain.  Which means I’m telling him “No” to most food.  Add to that, the fact that he puked out another nG tube, last night.  Which tells me his stomach is still really sensitive.  We had another power outage Friday night.  It went out about 11:30, scared Gregory.  He ralphed at 12:30.  The last several weeks, he has been feeling so off that all he wants to do is be close to me.  Preferably touching, laying in my lap.  He’s been very sleepy, too.  At least for the last few days.  I’ve been wracking my brain, trying to figure out why.  Any change in his demeanor can mean something big.  He started blood pressure medication on Monday.  For the last several weeks his pressure has been elevated.  So, starting medication was a logical, evidence based, decision.  Home health came out today to place a new nG tube and before we started I asked her to take his pressure.  Thinking this was a possible culprit, I had withheld his blood pressure medication today, knowing I would be getting a reading.  Monday his pressure was 121/84.  Today it was 94/58.  Without medication.  I’ve been trying to think of a way to get more accurate reads.  I’m wondering if the early morning clinic visits are superficially elevating his pressure.  Yes, I could purchase a little hand held automatic device, but that’s pretty expensive.  I asked home health if they would loan me a cuff and just teach me how to do it.  Manual reads are far more accurate, anyhow.  I already own a stethascope.  I use it to check placement of his nG tube.  Make sure it hasn’t migrated out of his stomach.  (I do this by using a medication syringe inserted into the end of his tube, place the stethescope over his stomach and push air through the tube.  You can hear the whoosh of air as it enteres the stomach.)  We have clinic on Monday, along with an IViG infusion.  I’m hoping to get some help and answers for his GVH.  The kid needs some relief. 


All in all, we are doing good.  I’ve just had a few too many moments, lately, where the reality of all this is flashed before me in Technicolor.  Moments where we are going about our routine and I get a flash of “do you really realize what you are doing?  This is soooo not normal!”.  Which is at constant odds with “He is doing so well, comparitively.  What are you complaining about?”.  This cancer beast fractures families.  Throws everything to the four winds and keeps it there.  No matter where you are at on the continuum, you feel like an observer of what used to be.  There are parts that I really miss.  Yet, they are simple things.  Being with Larry, Curtis and AnnMarie, under the same roof, is the biggest.  Actually the only one, for now.  It doesn’t get to me all the time.  Just in those Technicolor moments.  I know Gregory feels it, too.  When we ran to our HomeHome pharmacy to pick up a med, he recognized it and chatted about the neighborhood.  The very next morning, he sat up from waking and started yammering about “Nana’s House”.  First time he’s done that.  He remembers, too.  I watched Mozart & The Whale, this week.  It was filmed in Spokane and not in the usual way where you see a glimpse of your hometown in a movie and go “Hey!  That was Spokane.”  This entire film was entirely Spokane.  Gregory recognized Riverfront Park and the carousel and got teary eyed.  This week has been full of moments like that.  It’s also been filled with plenty of love and tenderness, too.  Sitting here, snuggled up with him is beyond pleasant.  The other day he said to me, “Mommy.  I love you.  Really badly.”  Said it again today, too.  Lately he has been sleeping curled up right next to me.  Like a little shrimp.  Nestled in any curve he can find.  He’s even been wrapping his little arm around my neck, while he is sleeping.  While it is sweet as can be and I LOVE it, I can’t help but wonder what is compelling him to feel the need to do this.  How is his little brain processing all this.  I’m realizing that he will not, magically, cross the one-year-post-transplant mark and emerge unscathed.  I knew he wouldn’t, but seeing it is different.  All three of the OffSpring are going to require some pretty heavy hand holding and assistance.  For some time.


There are three families that are very heavy on my heart.  ParkerMaddyGregory H.  I don’t have the vocabulary to express how I feel, right now.  What I can say, is that I don’t know where to put, what I do feel.   They are having such a rough time.  If you feel it, please drop by their pages and drop a line.  I KNOW that every word makes a difference.


This is a pretty down post, but it’s where I’m at, for now.  Don’t send the troops and get all paranoid, though.  It’s well in hand and we do have plenty of fun, giggly time.  As Larry says: “It is what it is.”  And it is.  ’til later, gotta jet.


BTW ~ 272 days since we started this.  195 days since we’ve been home.  164 days since transplant.


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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