The hair is falling out, and it just isn’t falling out, it is getting everywhere. Before we moved to Minnesota, we had two beautiful, big, hairy, dogs and they didn’t shed as much as Rafi is right now. When I got here this morning I saw a couple of hairs on her pillow, but by nightfall, she was leaving a trail of hair everywhere she went. The hats they have here are made by volunteers but they seem to be all made of wool. To a child that already suffers from incredible itchiness, wool is like watching 7 hours of David Blaine. So tomorrow I am going to try and find a nice soft, cotton hat for her.

I would say that she had a pretty good day today. She walked all over the room for a period of time, stood up a lot, laughed a lot and got a good nap in. Her mouth didn’t really bother her so much today, but let’s attribute that to the 24 hour drip of fentanyl (her new pain medication). After the dilaudid/ativan slight overdose the other night we thought it prudent to change her medication to one that is fast acting but doesn’t stay in the body for very long. It seems to be doing the trick just fine. However, she is still running consistent and high fevers. The Tylenol is not quite bringing them down as effectively as before, but add an ice pack and in conjunction they work together well enough. She also needed a transfusion today as her platelets and hemoglobin were low.

We are constantly reminded by the doctors that the worst is yet to come. Even though we’ve prepared ourselves for this, it’s a little scary to be told that over and over again. This may be one time where the anticipation is not worse than the actual event. Thankfully, I haven’t had that hard of a time staying positive. Even though it really stinks to see Rafi feeling terrible when she spikes those high fevers, her entire face changes and her body language is like nothing I have seen before from her, she gives off a strength. She really is a tough little kid.

But it isn’t always easy. This experience is exhausting. Driving the 3 miles to the hospital this morning was a little difficult. I just felt a little sorry for myself and for Jackie. The things we’ve had to give up, the pain we see in our daughter’s eyes, the anguish in Rafi’s tone when we won’t let her scratch the never ending itch, they get to you on occasion. Then I remember how strong Rafi is, and I am competitive as hell and can’t let a two year old best me.

“All these trials, will soon be past, look for something built to last”

So after 3 days living with her news cells that will change her blood type from A positive to O positive, I have no choice but to think she will now be here for the long haul and I am positive again just looking forward to a pretty bad cup of coffee coming my way.