January 6, 2011 - There's A Cream For That - Day 13

Hi everyone!

Well, we aren't having much fun at the hospital today. We are at day 13 with no little cells in sight. She had VERY low platelets this morning so she was getting a nice bag of these when I arrived. There are several things going on today. First Alex is getting some strange rashes in various places. They are just patches of red, bumpy skin. Her hands and feet have some patches, her head in a few areas... on her cheeks. One of the problems with these rashes is they are really warm and they burn. So getting her into a bath is just torture. Even though she really wants to take a bath. Today she just sat there and bawled. The nurse said that she has seen some kids where their skin actually blisters and peels. I hope it doesn't get this bad. They say the rashes CAN be GVHD (graft vs host) but they aren't convinced it is yet. First of all, since she hasn't engrafted yet, they aren't sure that rejection is taking place. BUT, skin rashes are a classic sign of GVHD. All we can do is treat the symptoms. Which brings us to this vast supply of creams... She has 5 different creams right now and they are prescribing her another one in the morning. FUN!

One of the dangers of having extremely low platelets is random bleeding. This happened to Alex today. She got a real gusher of a bloody nose. It's really scary when your platelets are so low so it's always a big concern. SO... as we are sitting there with towel after towel on her nose, the nurse was trying to get a Dr. on the phone to see what she wanted to do for it. Alex looks up at me... and in her nasally tone says "There is probably some type of cream for this." It's just amazing that there are still things that can make us laugh. The nurse came in with some spray that helps restrict the vessels in the nose. We got the blood slowed enough to administer the nasal flush and it seemed to work pretty well. It continued to ooze for awhile, but nothing like it was.

So today... there is this SMALL indication that something may be brewing in the cell department. She has a WBC (white blood cell count) of .2L (these are not to be confused with the white cells that we normally talk about up here... the ANC) This is really nothing and not even enough to do a differential on. She has been at .1L for the last two weeks... which is really nothing. I asked the Dr. today what this meant because I had seen a .2L show up on Alex's labs before and it seems these small numbers go up and down. Well... she said that EVERYONE's labs on Sunday showed a WBC of .2L so she is thinking something was wrong with Sunday's labs (evidently). BUT... she did say if this number was 'real' that it could be a trend. If it climbs even a smidgeon more, they can do a differential and be able to tell if other labs are climbing... like monocytes. This is one determining factor of counts on the rise.

Well, that's about it for today. It hasn't been a good day for Alex. She has been really miserable. It's so hard to watch all this and decide what to do? There is nothing I can do to fix this, or even make it better. All we can do is wait...

Thanks for staying with us everyone. It means the world to me to see the support I have. Please send some good vibes... blood vibes... rash riddance vibes...