Day 289: Never a Dull Moment.

8.8.14 - 1It’s been an eventful week, to say the least.  As always, we take the good with the bad, and keep moving forward.

Steroid Wean + Cold = Bad Combination

The past few weeks we have been attempting to wean Idan off steroids.  There are several concerns during this process, the most obvious being the return of the GvHD, but a second less obvious but equally dangerous concern relating to the adrenal gland.  When a person is on steroids for a prolonged period of time, their adrenal gland essentially goes to sleep.  The adrenal gland is responsible for many things, from responding to and controlling inflammation, to cuing you to wake up in the morning.  Think of the phrase “adrenalin.”  It kicks in when you need it most, but most of the time you don’t.  As we were weaning off the steroids, it became clear that it would take a bit more time than anticipated for Idan’s adrenal gland to “wake up,” and remember what it is supposed to do.  Not much longer, but at least a few weeks.

8.8.14 - 2Of course in the last few days of the wean, Idan caught a cold.  At the time, his adrenal gland was still a bit groggy, so-to-speak, and didn’t quite know how to “kick in” to fight the cold properly.  So we spent most of Saturday of last week (for those who have been following our Facebook page, that was our 5th Anniversary) neurotically taking his temperature and blowing his nose every 2 minutes.  Idan’s temperature stayed just below the fever threshold, but just high enough to keep us panicked about a late night trip to the ER.  Idan tossed and turned and whimpered the entire night, a little furnace in between Akiva and I.  But some time between 4:30 and 6, he fell asleep finally.

Thankfully, his fever broke and it was back to playing as usual on Sunday, but this last cold has put us through the ringer.  Every time we fall into a nice routine, we get a kick to the shin, reminding us to be as vigilant as ever.

Chimerisms and Med Changes

Meanwhile, it feels like we’ve been at the doctor’s office every day for the past few weeks.  We are weaning Idan off two other medications as we wean the steroids, which translates to multiple blood draws and vital sign checks each week to make sure his body is handling the changes in dosing and medications well.

But the good – no great – news is that, after all this, Idan will be saying goodbye to three of the thirteen medications he is currently on.  This is a huge step in the right direction.

The latest chimerism results are also in, and – for the first time in 9 ½ months – we can take a short breather.  Idan’s chimerisms are generally stable, with his T-cells hanging on at 32%, and myeloid only dropping slightly to 10%.  For now, the doctors are very cautiously optimistic that the graft has a shot of hanging on for good.  Although we had hoped to start weaning Idan off the other two immune suppressants by now, Seattle would like to keep them on for another 8 weeks at their current dosage and check Idan’s chimerisms again at the end of September.  If the graft stays stable, we should be able to start the long wean off of each of them in October, just in time for our return visit for Idan’s one-year follow-up back west.

1 comment for “Day 289: Never a Dull Moment.

  1. Shuky's aunt Rivka
    August 9, 2014 at 12:54 pm

    You are amazing parents. May HaShem continue to give you strength and energy and most of all good health for all of you.

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