Twists and Turns

It's been a real roller coaster since we went to the E.R. on Friday afternoon.  First we end up in the PICU with a diabetic crisis.  Then the PICU doc hears about Peter's blood disorder and thinks we really should be treating it.  It's hard arguing with someone about why you should allow your son to die sooner rather than later.  Especially if that someone is Indian.  So he calls in the hematology specialists, and the guy who did our biopsy isn't available, so his partner comes. 

The partner thinks that Peter's counts have been much too stable for the 5% cellularity that was found during his biopsy in November.  He wonders if maybe the hip that was sampled was "atypical" and that another sample would reveal higher cellularity.  And if that's the case, Peter could have a long time to live without significant symptoms.  He also said that the sample sent out for a chromosome study after the last biopsy "wouldn't grow", so this would be an opportunity to send another one.  Yes, Peter has every indication of having a genetic syndrome, but since the test for Fanconi's Anemia was negative, maybe there is something in Peter's environment that is causing his anemia, and maybe it's something that he could recover from.  I'm very dubious about this, but since we're already here, we might as well go ahead.

So we set up the 2nd biopsy for this morning.  Then our original hematologist comes in (he's the biopsy specialist) and it's obvious he thinks his partner is full of shit.  He is as certain as I am that Peter has a genetic disorder. He says he got a very big marrow sample the last time and feels that the results were very reliable.  In light of this morning's blood counts, he sees no value in a confirmatory biopsy or in sending cells out for a chromosome study.

This morning's blood counts?  We just had a CBC done on Friday, and all of his numbers went up a little. This morning we had another blood-letting around 6 a.m., and by 8 the new CBC results came in.  All of Peter's counts had dropped DRAMATICALLY.  Suddenly, in the blink of an eye, things aren't stable anymore.  Once again, I realize what a good idea it was to start working with hospice. 

As the chart above shows, Peter's platelets are now down to 14.  We've already noticed that his finger-sticks bleed a lot longer than they did a couple of days ago.  A serious spontaneous bleed is possible at any time.  He is more susceptible to infection than ever before.  The hematologist said he just couldn't give me any kind of guess as to how much longer Peter might have.  The two things most likely to happen are an internal bleed (head or gut) or an infection that quickly turns to sepsis.  These are utterly unpredictable.  None of this is new, but it was helpful to go over it again.  My hopes are on a swift end rather than a long, uncomfortable decline, but that's not something I can control.

It's possible that Peter's counts will stabilize again, since the out-of-control diabetes has to have compromised his bone marrow to some degree.  We see no reason to subject Peter to blood test after blood test, but the hematologist wants to see new counts next week, and I admit that I am curious about whether we really have a downward trend or just a dip.  If the counts don't improve or continue to decline, I think that anyone who wants to be sure to see Peter again should consider paying us a visit, or setting up a Skype session.  We just can't predict when the curtain will fall.

Big day ahead tomorrow --- we'll be on our own with all the finger pokes and needle sticks, counting the carbs and calculating how much insulin we need to correct and cover.  I plan to go to my paralegal internship as planned.  I completed a Powerpoint presentation for the head of the law firm from our hospital room last night. I'd like to get through another week and a couple more well-delivered tasks before telling them that I'm no longer a student at Roosevelt but will be enrolling online instead, IF they'll agree to keep me on.  I think they will.

Then there's school.  Peter eats breakfast there, and there's also mid-morning snack and lunch, so they will potentially give him three insulin shots a day.  Before he can go back (and we want him back ASAP), the doctor and school have to agree on exactly how it will all be done.  I expect it'll take a few days to get it all organized.

What is that Irish curse again?  Ah, yes: "May you have an interesting life".