August 26, 2008 - Radiation here we come!

Hi everyone! Well, Alex had her head mapping session today and everything went great. I was only allowed in for the first part and I was able to take a few pictures (updated). The techs took us all back into a CT room. They had lazers on her face and made some markings and put some form under her head that hardens up to exactly the shape of her head. After that they placed this plastic looking thing they took out of a hot water bath over her face. It was a waffle pattern looking thing... holes all over it, and then formed it down her entire face and head. There was a small hole for her nose, but there were little holes all over. This also hardens up after it dries. After this point we were asked to leave the room as they had to do a CT scan on her. I am not sure why, but I should have asked?? They said everything went well, and the radiation will start on Tuesday. Hopefully I will be allowed to take a few pictures of that procedure as well. I hope I am not the only nut that takes pictures of everything?? Someday Alex will be glad that I took all these, right? :o)

Oh... on the hair subject... Over the weekend Alex's hair started falling out like crazy again... in big clumps and it was stressing her out, so she just had me shave it yesterday. Dangit! She was a good sport about it, but I could tell she was bummed that it was going again. This should be the last time she loses it. SO... the red hair is gone and now she is back to smooth. She really does have a great head. It feels soooo good. I think she looks beautiful without hair. I am telling you, others aren't this lucky!

Thursday we are supposed to have home health come again and do a CBC at home to see if treatment continues on Friday. I am thinking she is going to be good to go. She is feeling GREAT and it has been such a nice two weeks. I wish we could stay in this mode for awhile longer.... but the show must go on. I will try to get some pictures on Friday as well, since she has a whole mess of things going on.

Thanks for tuning in for Alex's story. It really does mean a great deal to us. I will update again this weekend. Have a great Labor Day everyone!

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.

April 29, 2008

Just a quick hello and update... Alex is doing pretty good this week. It is so nice to have a week off!!! I don't remember if we have had two weeks in a row of no chemo?? I don't think so...

Well... I updated pictures and the latest is... (drum roll please) Alex decided to get a big blue streak in her hair. I was getting mine done (by my super coolest of all mothers) and while we were picking up supplies, she decided of all the times to go wild and experiment...now is the time. SO... I think it looks really cute on her.

The other new picture is from last night... the three of us went out to this new Gelato place... VERY good!!! It is so good to see her eating normal again and out and about. We are staying clear of busy places now, and hoping her counts are good come Friday. Friday morning home health will come in again and check them... then it will be a new roller coaster ride come Tuesday.

Dan and I are going on a much needed vacation next Monday and Alex's dad is coming into town to be with Alex for a whole week! This will be great for the two of them. I hope she isn't sick the whole time. Hopefully he will take some pictures for me to post when I return.

Starting on Tuesday the 6th, she will have another spinal tap done, and an entire new series of chemos. Some of which are the ones I administered at home back in January.

Have a great two weeks everyone! Please keep up the good blood vibes!!!! I need you stick with us even though we are going to be gone for awhile :o) I will update as soon as I return.

God bless!!!

April 20, 2008 - The Blood Drive

Thank you everyone who came out yesterday to the blood drive!!! It is so amazing to witness the generosity of someone sitting there giving blood.

Thank you Tina, for arranging this drive... you did a great job, and it was so good to see you!

The day was awesome! As you can see by the updated pictures, Alex was able to attend the drive. It was a success! It was so wild... we were standing in the hall waiting to be interviewed in order to donate, when this stranger walked up to us and asked us what we were doing... he was the janitor of the building... we told him about the drive and who it was for, and he called his wife up to drive over, and these two strangers sat down to give blood for Alex's cause. Un-real!!!

I want to thank everyone who came... I wish I knew all of your names. Please know I mean YOU when I say thank you!

Thank you Dave Koz for coming out on your 50th birthday and thanks for bringing your friend Roxanne. It was so nice to meet her and I can't believe even she gave blood! The kindness and generosity just amazes me every day as we go through this ordeal.

I will tell you... this was my first time giving blood. I had never even given it a thought before all of this. I was even a little nervous about doing it... if I am honest. But... I figured with all of what Alex has gone through, the least I could do is sit there and give some much needed blood. ALL my worry was for nothing! It was such an easy process! It really only took a few minutes to give and didn't hurt a bit. It was such an easy thing to do, that I will seriously keep giving as much as I can.

Thank you everyone who came out! Thank you for giving up a part of your Saturday to do something in Alex's honor.

Alex and a VERY good friend of mine, Dave Koz

Check out all the good blood!