Day +38, BMT :: Adenovirus, GVHD Stage 3, and ECP... Oh My

Jade has been sleeping a lot.  Since the transplant.  Since the procedures on Friday.  Nobody questions it; her body has been through a lot and needs to recuperate.  For the third time in my life, I've been advised to "sleep when the baby is sleeping." I don't usually. I can't. Partly because of the revolving door of staff who are in and out of the room, but also partly because I don't want to miss those moments when a smile begins to form on her face and then a laugh... yes, she laughs in her sleep. But she is awake now... and just sang her way through the dressing change for the hemodialysis catheter that was surgically placed in her chest on Friday.  You're gonna hear me roooooaaarrr!  In spite of everything that she has gone through and has yet to go through, Jade has held onto her happiness.

Jade had been scheduled for upper and lower endoscopies to check for graft versus host disease in her gut, but a positive test for the adenovirus on Thursday threw the team into a completely different gear. THIS is the virus we worry about, the attending told us.  Steroids for treatment of Jade's confirmed skin GVHD and suspected gut GVHD were now off of the table. She will instead have weekly infusions of an anti-viral to help curb the adenovirus in her system. The risk of the steroids strengthening the virus and having it spread from her gut into her blood or lungs was too great.

So not only did they perform the upper and lower endoscopies on Friday, which confirmed graft versus host disease in her gut and advanced her from Stage 1 mild GVHD to Stage 3 severe GVHD, they also placed another catheter in Jade's chest so that she can begin extracorporeal photopheresis (ECP) to treat her GVHD instead of steroids.  (ECP is a type of long-term therapy that will withdraw some of her blood, separate the white blood cells out, expose the overzealous T cells in Jade's donor blood to ultraviolet light to calm them down and thereby lessen the attacks to her skin and gut.)

The team feels good about their being able to get this under control. For now, Jade is back on round the clock IV nutrition and a very restricted diet (started with water and ice chips for 48 hours and advanced to include sodium free chicken broth and G2 Gatorade this afternoon). She had a tough time with the water and ice chips diet.  In fact, it is one of five things that have made her cry at the hospital (along with needle sticks, dressing changes that tear skin, feeding tube placement, and saying goodbye to family and friends.) What a difference 30cc (that's essentially the size of a medicine cup) of chicken broth makes.  A smile has replaced those tears.

Thank you for keeping Jade covered in prayer as she went into the operating room last week and for continuing to keep her in your prayers throughout this journey toward complete healing.