Wednesday, November 9, 2011

Relapse

We received Keegan's lab results from yesterday earlier today.  Unfortunately, Keegan is having a flare of the HLH/MAS.  His ferritin level (an inflammation marker) jumped from 455 last Tuesday to 15,000 yesterday.  Normal levels are usually under 75.  10,000 is usually the cut-off to start chemotherapy.  Keegan's went from 15,000 to almost 50,000 in a matter of just a few days in September.  We are unsure if this flare would have happened without the tummy bug from last week.  The team allowed us to give Keegan an extra dose of anakinra today, and we will go in tomorrow morning for repeat labs.  If there is no change or numbers have worsened, Keegan will be admitted, possibly to the ICU, for another three-day steroid pulse.

Keegan is exhausted, quiet, and having bad diapers again.  Given that his numbers were so high yesterday when he showed no symptoms, I would bet the house that labs tomorrow are not going to be improved.  He has not spiked an "inflammation fever", but that doesn't surprise me.  It's complicated, but we know he had all of the criteria for this condition except for a fever while on his old immunosuppressant, Prograf.  We stopped that drug when he was in kidney failure last year.  We believe it was the switch to Rapamune that allowed the full picture, fevers included, to flourish.  Now that Keegan's back on Prograf, I'm not surprised that he doesn't have a fever.

We are also unsure what the plan for treatment will be from here on out.  I don't have the time or energy to go into much detail tonight.  There are a few other options besides chemo at this point.  None of them are desirable.  This news is utterly defeating.  And yet, we are gearing up for the fight.  We will not let our Bug down.  For tonight, we would just really appreciate your prayers that Keegan stays stable and that Gray, the medical team, and I can make the best possible decisions for his treatment and long-term health as possible.  Thank you.  More than you know.  Thank you.

4 comments:

Becky Cudlipp said...

Oh no. I am so sorry!! Will be praying for Keegan and for you all for decisions on treatment.

JTrynosky said...

God Bless... Keegan and the rest of the family are in our prayers. God bless you all

lucia said...

we'll be praying for you all! God is with you every step of the way...

Julie said...

Praying