Please Keep Praying...

     Beginning Sunday night our little Hazelnut began feeling unwell and has not felt any better since. The good thing is that we have some answers finally; maybe not the ones we want, but answers nonetheless.  On top of the BK virus (which is still causing a lot of pain and gives her bloody  and clotted urine), Hazel has also developed the Adenovirus in her bladder AND the Epstein Barr virus.  She has also, unfortunately, begun to develop the one thing we hoped that she wouldn't: VOD (veno occlusive disease).  It's a condition where some of the veins in the liver become obstructed, and her liver can no longer function properly or even be able to filter her own blood.  Some of the signs of VOD are fluid retention, weight gain and an elevated bilirubin.  She is presenting with all of these. It can be a very serious and life threatening condition, especially if left untreated.  Before her transplant even started, this disease was the main topic of our consultation meeting, and we were (and continue to be) assured that they are extremely vigilant and aggressive in treating this, and have been very successful.  We have witnessed that over the last few days.  She has been put on more medications than I can count, we have had consultations from several doctors and she has been examined by the ICU team.  As of right not, she does not need to be transferred to the ICU, but they are very aware of her situation, and if anything changes, we will be moved.  
     The goal right now is to, as quickly as possible, get the fluid and weight off because this will only exacerbate the VOD.  But the problem is that she requires more fluid to flush out the bloody urine from the BK virus.  But the more fluid we give her, the harder it is to take it off.  To help get the fluid out, she is on medications to make her urinate as frequently as possible. They have lowered her fluid slightly, and will now put a catheter in to flush out the blood and clots in the hopes that she will no longer rely on a higher fluid intake.  A urologist will be coming for a consult to possible do a scope to rule out any tears in her bladder that would have to fixed surgically. She is also still vomiting and finding it hard to take her oral medications, and right now is requiring a little bit of extra oxygen.  She has received several blood transfusions and more platelet transfusions than I can count.

     PLEASE KEEP PRAYING FOR MY DAUGHTER!  AND MAKE THE WORLD AWARE OF CHILDHOOD CANCER!  WE NEED LESS TOXIC TREATMENTS FOR OUR CHILDREN!