Have it your way? ~ NOT!

I’ve been totally dragging my feet on this one.  What’s that river in Egypt called?  That and the fact that I  have had VERY little time to spend writing.  First things first:

Friday July 10, Platelets ~ 63, Hematocrit ~ 39, ANC ~ 309, Weight ~ 13.4
Saturday July 11, Platelets ~ 53, Hematocrit ~ 37 ~ ANC ~ 675, Weight ~ 13.5

Gregory’s new Bone Marrow is doing great.  Everything seems to be progressing as it should.  Summary of Day 28 testing.

Chimerism ~ Peripheral Blood is 100% donor
Flow Cytometry ~ There is no evidence of abnormal cells.
Morphology ~ All lines of graft are working.  Red Cells, White Cells and Platelets
Skin Biopsy ~ No evidence of GVH!

This is all fantastic news.  He is tolerating his nG feeds, we are slowly working up to 50ml/hour.  He is tolerating a couple of meds via his nG tube.  Also?  He LOOKS so much better.  We are in the midst of a Prednisone taper.  We were almost finished with the Morphine………… almost.

Friday morning Gregory started having severe pain with urination.  It has bee confirmed as BK Virus, also not-so-fondly-referred to as The Burger King Virus (at least by patient families).  I have one word for this, but it’s not very nice.  Instead I will say:  AAAAARRRRRGGGGHHHHHHHH!  There is no anti-viral for this.  None.  We have to wait it out.  It causes extreme pain with urination and painful bladder spasms.  His symptoms are being treated with Pyridium and Oxybutynin.   The Pyridium is an analgesic for the urinary tract and the Oxybutynin is a smooth muscle relaxer for the bladder.  The problem is this.  THEY DO NOT WORK 100%.  He is stil in pain upon urination and when his bladder spasms.  Which is freakin’ often.  How does every five minutes strike you?  We upped his Morphine drip and are going to bump it again tonight.  Last night he received two doses of Benedryl, just so we both could catch some z’s.  He was having a pretty hard time of today until bath time.  He was NOT looking forward to taking a bath.  The nurse suggested a Morphine bolus!  Yay!  He received one and has been in super spirits ever since.  Super chatty, happy and very little pain, while urinating.  It is still every 5 minutes, but it is with much less pain.  He has had elevated blood pressure and received some medication last night.  Just once, though.  Elevated temps are not associated with this, which is a huge releif.  At least the rest of his body has been comfortable.  Come on, though.  Peeing.  Every.  Five.  Minutes.  Sometimes he goes for 15 minutes or even 30!  I’m not sure what tonight will bring.  It’s now almost midnight and he is still up.  As soon as I  crank this out, we are going to cuddle down and try and get some rest.  Thankfully Papa was here today and I  was able to get a few hours nap!  So.  We are stuck in the hospital until this works it’s course.  Oh yeah.  Blood in the urine and blood clots are quite common, too.  Wanna know how much longer we will be here?  At least another month.  Yep.  Minimum.  Several months in not uncommon, either.  Craptastic, huh?  He does have traces of blood in his urine, so his platelet threshold has been raised to 30.  One of the things that is saving us is that Gregory is more than willing to use the hand held urinal.  We hang it on the side of the bed and neither of us need to get out of bed, struggle with the IV pole and make a trip to the potty.  I tell you, THAT takes five minutes in and of itself.  I am awfully grateful for his possession of a penis, at this point.  

I must admit to a selfish bright spot.  Since we are going to be here for at least another month (unless something radical happens) I will be able to make it back to Spokane for the first weekend in August.  Why is this important?, you ask.  It’s the weekend of my 20 year High School Reunion.  I unabashedly loved high school and am really looking forward to being able to attend.  Also?  I’ll get to spend two nights at home with Larry and the older OffSpring.  Talk about win-win all around.  Nana will come and be with Gregory in the hospital.  Providing we are still in-patient and all else is well, this is the plan.

Time to hunker down and try to get some rest.  My request?  Grant me the stamina to hold a urinal in front of Gregory, every five minutes, while he pees in pain, for the next several weeks.  Grant Gregory a great combination of medications to releive his symptoms, to the best of their ability.  One more thing.  Sacrificing Bone Marrow performance in order to grant these wishes?  NOT AN OPTION.  We will get through it, one way or another.  ’til later, gotta jet.

PS ~ At least we really love our room.  Newer pix, later. 


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in anc, chimera, day 28 bma, days 21-30, engraftment, gvh, ng tube, steroids. Bookmark the permalink.

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