It’s been a busy couple of days. We were originally scheduled to exit the hospital yesterday but alas, it was not to be. Rafi started having fevers again and her blood pressure is still pretty high so we are still on 5D and will be for a few more days. Today, we had another CT scan to investigate the possible source of the fevers, then she had an ultrasound to look at her kidneys to see if they were the source of the high blood pressure. All tests showed she is doing very well. So we are still treading in the land of unknown but nobody is worried. She has no signs of GVHD which is comforting. GVHD is when the new cells see the body as the problem. The manifestations run the gamut of serious to mild. So far so good, so we are still smiling.

Actually we are smiling a little more today. Rafi hasn’t slept for the past six nights. It’s been tiring at best, and frustrating continually. Our savior nurse, Lindsay, whose not been on the floor recently, came back on duty and got Rafi some Ambien. We hope this will let Rafi get a good night sleep. Which means we can hopefully get some sleep as well. We need it almost as badly as Rafi does. Jackie is in the hospital tonight so please keep your fingers crossed.

Now for the bigger news. Yesterday was Rafi’s skin biopsies and skin fragility test. The skin fragility test is one in which the doctors, using a suction device, force a blister to appear. We did this before the transplant started and it took less than four minutes for the first blister to appear, and just over four minutes for two more to appear. A person with normal collagen VII levels will take about forty five minutes to an hour for a blister to form. Yesterday, blister number one formed in just over fourteen minutes. The next two blisters took over twenty minutes to form. In and of itself, this test doesn’t really tell us anything because there could be a number of factors that make the difference. Nonetheless, I choose to believe it is the first indication of success and of wonderful things to come. We are hopeful that this is the first sign that the transplant is working. We should know more by the end of the week. We are waiting on the blood tests that show engraftment and the skin biopsies, so I’ll have more to tell later on this week.

Rafi continues to make everyone around her laugh. She doesn’t engage people directly but the things she says entertains and surprises those around her. Her favorite thing is to now quote the movie, Kung Fu Panda. At any given time of the day or night, the movie is playing. She is also quite taken with The Incredibles as well. Other than her books, her new found love is stickers. We’ve never let her have them before, but the really are a great reinforcement for her walking. There are rolls of stickers at the nurses station so we constantly try to entice her to walk the hallways back and forth to get to those rolls. Each time she gets there, she gets another sticker or two. She now has a box full of stickers with Mickey Mouse, Dora, Elmo, or whatever is available. You can hear her down the hallway saying “I see the stickers” or “look, stickers”.

It’s time to pay some bills and try to get to bed at a very early hour. Until tomorrow………..