May 29, 2008 - An overnight...

Just a quick update to say that we are back up in the hospital today. Alex was running a fever last night and this is what they do :( SO, at midnight last night we were on our way up here. One nice thing is that I asked the doctor if we could just go up to the admit floor and not go through emergency. SO, he arranged a bed and off we went. Things are looking pretty good here. They are hopeful that they will have us go home today. Wooo hooo

I will update some pictures when I get home... Hopefully that will be soon.

Take care everyone and I will let you know what happens.

May 23, 2008 - More blood!

Hi everyone... just a quickie to say that everything is good. We went up to the hospital yesterday for Alex to get her blood. They called just before we left and said that they decided to give Alex 3 units of blood instead of 2 because she was really low... so we were there for a little more than 4 hours. It is a LONG, boring process. Alex is a trooper though. We watched movies and snacked. She is feeling MUCH better and has some color now.

I updated the photo page. I couldn't go into the room with the MRI machine so I had to take a picture at the door.

We go back into the clinic on Tuesday and we also see the neurologist then as well. SO, hopefully I have some really good news to report on Wednesday.

Everyone have a great Memorial Day weekend. We are on lockdown here since Alex has NO white blood cells, so we are just hanging.

Take care everyone and I will update in a few days. Thanks for all your support. We do appreciate it.

Grandma and Alex watching a movie while Alex gets blood.

The nurse sets up another bag...

May 22, 2008

Just a quick update for everyone that worries... I will update more tomorrow, but we made it to the hospital today and Alex had her MRI... she was accessed up in the Oncology clinic where they did another CBC (blood count) and her red counts went down even lower than Tuesday so they are going to transfuse her tomorrow with a couple of units of red blood cells. Her platelet count went up a little, so they won't have to do those also. They typed and cross matched her this evening, so hopefully the blood will be ready when we get there tomorrow afternoon. I will update tomorrow with some new pictures. I just thought I would check in and say that the MRI went well and that we are heading back tomorrow for our 3rd day at the hospital this week. At least we aren't sleeping there :o)

Talk to you all tomorrow! Please keep the blood cell vibes coming. We need them!

May 21, 2008

Hello everyone!

Well, we had clinic yesterday and things went as good as possible. Alex hasn't felt well at all over the last week, so it was just an OK visit. She lost almost all the weight she has gained back over one week, so that sucked. Other than that, things are fine, it just wasn't her best week. She has had a low grade fever going on since Friday, but they were confident that it was just due to a cold that she has. Her blood counts were all horrible. She was borderline needing a trasfusion on both the red and the platelets and her white count was pretty much non-existent. They really like the counts to come up on their own, so she was sent home without blood for now. We are going back in tomorrow so Alex can get another MRI, so they will check her counts again if she is still feeling like crap and then they can transfuse then. Hopefully she will feel a little better by tomorrow. I spoke with her neurologist last week about the Lovenox shots, and she said that she wants a MRI done before the shots are stopped. This will give her an exact image of what things looked like at the end of the blood thinners incase there is a problem down the road. I can't tell you all how excited Alex is to get rid of these twice a day shots! In some ways I can't believe it has been 6 months since she had the stroke... and other times I think this has been the longest 6 months of my life. I can't even tell you how different things are today than they were 6 months ago. Alex has come so far... there are doctors at our clinic that are just amazed by her progress.

When I talked with the nurse yesterday in clinic about how Alex was feeling, I learned that all of this is normal. I guess it is just hard for me because Alex has been doing so good that it is really hard to see her so "down" again. I asked if all the chemo from the last two weeks were cumulative, and it is. That explains a lot... then the nurse went on to tell me that people think the ARC is an easy chemo because they allow parents to do it at home, but she told me that ARC is not a mild medicine... it is a big, heavy hitter and most feel really crappy right now. This was the first time that Alex has had to go to clinic carrying her pink bucket in a long time... sucks to have her so sick all the time. SO, no pictures this week.

I will update tomorrow or the next day with the MRI info... and hopefully remember to get pictures this time.

Thanks to everyone for your thoughts and prayers. They are, as always, much appreciated.