Today was another trip to MSK in NYC, for Amber’s second dose of pembrolizumab.  As always, this started with checking Amber’s vitals, doing some blood work, then waiting around for a while until a room is available for the infusion.  Amber had a little trouble with it this time, getting some flushed cheeks, a minor fever, and a little stomach ache.  Nothing unexpected, nothing major (the list of potential side effects is very long and scary), but still meant needing to hang around a bit longer for observation – plus Benadryl, Tylenol, Famotidine, and Ceftriaxone (and antibiotic, just in case).  Amber’s a trooper though, taking it all in stride.

I’m reminded of our time in the hospital room at Connecticut Children’s Medical Center.  The beeping of the machines, Amber being connected up to the machine supplying her medicine, her lying in the bed napping.  But beyond all of that, just as I was at CCMC, I am again amazed by the level of care the nurses provide.  Not just the knowledge they have in their field, but the human, caring, supportive approach they take with Amber, and with us.  At CCMC, our emotional state survived only through the help of the nurses; and while we certainly hope to not have to spend 50 days in a room here at MSK (or any other hospital), I see MSK’s nurses share that same critical quality.

We also got the results of the genetic testing from MSK’s genetics team.  All the tests came back negative.  This is a mixed blessing – on the positive side, this means that there is little chance of our other children being at risk due to genetics; however, this also means we still do not have any clear cause for all of this, and so cannot target her treatment to that cause.

So, we keep doing what we’re doing – weekly trips into NYC, weekly OT and PT sessions, watching Amber all the time for anything that causes concern, keeping her happy and moving forward, and praying – lots and lots of prayer.