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.

Day +34, BMT :: The Homecoming That Wasn't

It's true; Jade is still at the hospital.  When Saturday rolled around, Jade was prepared to do her final set of vital signs before discharge and... she spiked a fever. So, the picture of home from her daily calendar was discretely erased, the bags came off the cart and we hunkered down for an extended stay. The two days that we had hoped for when we brought her into the Emergency Room last Monday after we had just unpacked at home has now ballooned into two weeks.

The fever resolved itself within two hours, but the alarm had already been sounded. Blood cultures and antibiotics were on deck. And the team had already started searching for answers - maybe Jade's transition to the oral steroids, which are not as effective as IV steroids, was indicative of too low of a dose.  Perhaps the rash that wasn't responding to the steroids as quickly as expected -- and persistent loose stools -- were a tell-tale sign of graft versus host disease (GVHD) lurking somewhere in her gastrointestinal (GI) tract.

So, in addition to Jade's bone marrow aspirate and biopsy that were performed on Monday, about a dozen other studies, cultures, tests and scans have been completed or scheduled. Thankfully, the preliminary results from the bone marrow biopsy look good and several infections have been ruled out, but it hasn't eased the team's concern about the possibility of what still appears from the outside to be a mild case of GVHD spinning out of control into a serious case that would be difficult to treat.

Jade is tentatively scheduled for upper and lower endoscopies, procedures that will allow the doctors to actually see the inside lining of her digestive tract and take some samples from within, on Friday, August 8 to help determine if the GVHD is affecting her gut. No definitive timeframe on her discharge either; I wouldn't believe it til we were actually home anyway! For now, we are just focused on keeping Jade happy and engaged... and fulfilling her steroid-inspired requests for hot dogs at breakfast and Cherry Garcia at midnight.

Thank you for your encouragement and for your continued prayers for Jade and for a cure.

Day +29, BMT :: 100% DONOR!

Jade spent two full days at home before being readmitted to the hospital with fevers, rash, facial swelling that nearly shut her left eye, and the equivalent of a really bad sunburn, but her smile and laugh are as strong now as they have ever been! 

 

Why? Well, blood cultures show no infection, scans show no sign of damage to her major organs, and the chimerism (those specialized blood tests that Jade took just 20 days after her transplant) shows that HER BLOOD IS 100% DONOR CELLS! Her new cells have made themselves at home!!! Surely this news excuses the excessive exclamation points.

 

The hyperpigmentation that has transformed Jade's skin from head to toe to, as she describes it, "Daddy's skin," and the subsequent burning and peeling  is an effect of the chemotherapy she received one month ago and will resolve with time. 

 

But the symptoms that caused her to be readmitted to the hospital for the whole week are now being attributed to graft versus host disease (GVHD). That's when the new donor cells attack the host's (Jade's) organs or tissue because they see them as foreign. GVHD can be life-threatening when the donor cells attack vital organs, but Jade has a mild case. And a mild case is actually considered good; it's an indication that the new cells are fighters and would likely fight leukemia cells if they were to encounter any.

 

For now, Jade's GVHD will be treated with a low dose of steroids; we pray that contains it and resolves it!

Jade will head home again this weekend and return for an out-patient bone marrow biopsy on Monday to determine whether her leukemia is still in remission and confirm that her marrow is also 100% donor cells. 

 

Thank you for continuing to lift Jade up in prayer!  

 

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#smilingforme #bravestrongready #day29