Tapering Rux

Nick is doing well and counts are moving/trending in the right direction.  Although Nick is progressing, at our meeting with Dr. Perez (BMT doc) Friday, she shared concerns about allowing Nick to return home right now because we are just about to begin tapering one of his meds, Ruxolitinib.  Rux is one of the meds Nick was given in the M.D. Anderson "trial".  It was a study of Rux in combination with the chemo Vidasa in an attempt to control myelofibrosis and avoid the transplant. When the trial was not successful for Nick, he was ordered by Dr. Perez to continue the Rux in lieu of tapering prior to transplant.  The side effects of Rux with regard to BMT patients is quite controversial, but all research stresses that regardless of  the patient situation, Rux must be tapered to avoid serious complications.  Dr. Perez kept Nick at the 30 mg he took during the trial throughout the transplant process.  Starting day +30 post transplant, she now has him tapering off the drug.  She does have serious concern about this - even at this point - so its understandable that she insists that we stay very close to the hospital during this period.
On Monday, Nick and I transferred to the Moffitt Furnished Housing (Lodge at Lakecrest across from USF).   We've been on their waiting list since our discharge February 7th.  This accommodation is 1/3 of the expense of the hotel and provides more room and access to amenities on site.  If you know Nick, you'll understand when I say that the walking trail and lake on the property alone made it worth the move. Obviously our goal is to get home as soon as possible, but we're willing to do whatever it takes to make sure Nick is a safe distance for emergency treatment if necessary.
The doc also added an additional drug this week, Prednisone.  This drug is meant to prevent any graft vs. host disease (GVHD) as Nick tapers the Rux.  GVHD is where the donor stem cells can start attacking Nick's organs. We pray this doesn't happen, but as we understand it, the key with GVHD is to catch it as quickly as possible so that Moffitt has a chance to slow or stop the process.  We watch for things like fever, skin rash, digestive changes, etc.  The tapering started Monday and will run for 10 days where he will be Rux-free on March 1st. Nick reports that he feels he is slowly getting better each day.  He said he has a little less pain each day.  He does still have a touch of the mucositis, but rates it at about a 2 on the pain scale (1-10).  For about a week now, he has had soreness in the palms of his hands and burning at the heels/soles of his feet.  He says it does seem to be getting a little better each day.  All of these symptoms continue to be the result of the chemotherapy he was given prior to transplant.  Today Nick had a bone marrow biopsy.  This biopsy will tell us if the old CAL-R and TET2 (bad cells) are gone and the newly transplanted cells have "taken over".  We're not sure when the results will come to us, but we'll share as soon as they're in.  It should be noted that Nick chose to use "local" anesthesia only (just as he did for the last biopsy) but after today's procedure, he asked that I never allow him to do that again!  Both he and the nurse explained that it was "difficult getting the marrow".  Both agreed that NEXT TIME = IV SEDATION.  His back is a bit sore from this, but we've kept ice on/off every 20 mins which seems to be managing the pain.
Wednesday he will go in for labs and see the Physician Assistant.  Friday, they will be removing the triple lumen catheter/line in his chest and will replace it with a "port".  This will be a HUGE day for him because the port is placed under the skin which will allow him to;  shower without having to shield it from water, "flush the line" monthly instead of daily, and will allow him the option of wearing a t-shirt!  Oh, how I take for granted the little things...taking a nice warm shower, sleeping well at night, waking up healthy.  It's not until these things are taken away - even for a brief time - that you realize they really are gifts to be treasured.  Thank you, God for every gift...both big and small.