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!

March 25, 2008

Standard Interim has been officially kicked in the BUTT!!! Woooo Hoooo!

Hey everyone! Well... we made it to clinic today and everything was great. Everything except Alex lost another 3 1/2 pounds!!! NOT good!!! I was really surprised by this! I think because the dreaded mouth sores have returned, I don't think she has been getting as much to eat as I thought. I have my work cut out for me to get her eating before the next phase because the doctor wants her up and holding steady. Get this... I can wrap my two hands around the biggest portion of her thigh, with room to spare!!! Other than that, everything else looked great. Most of our day was spent waiting on the chemo. It seemed to take forever today. Dan and Alex made good use of time by doing chair racing up and down the halls (picture posted). I know they love us there.

Alex has 15 days off until the dreaded phase starts. She will get many many different types of chemicals in this next phase. I have posted a picture of her next schedule. It shows what she gets on what day. On day one, she gets many things... some things run day 1 thru 7... there are several different chemos that she will receive 4 days in a row, at different times.. she will have 3 more spinal taps done... They are also introducing several types of chemo that we haven't had before... some orally, and some IV and some in her spinal fluid. She also has the YUCKY steroids day 1 thru 7 and then again days 15 thru 21. We are also back to going to clinic every Tuesday. This will be her last break of any kind before she finally gets to maintenance. WHICH I PLAN TO HAVE ONE ASS KICKING PARTY!!!!! Those that can attend, it would be great to see you there. I will let you know when.

So... we have 15 days of freedom until this starts. She probably won't feel the best tomorrow, but then things should start perking up. I hope to have a good couple of weeks with her. One thing that is WAY exciting that is going to happen during this break, is that it is going to be Alex's 18th birthday!!!! April 3rd WOOOO HOOOO!!!! Alex has been so excited to register to vote since she was WAY young... too funny... but true... SO, we will definitely get that done. It is so cool that she will probably be feeling really dang good by her birthday! Her dad is going to fly in (just for the day...but WAY cool!) and the family is going out for a BIG dinner at The Melting Pot. Something fun and different, and her choice. I will take pictures of the party and let you know how it goes.

Also... the Physical Therapist starts on Thursday. It will be so good to get Alex doing some different things. I need to find her a "hot" personal trainer. I know that would do it for me... hee hee

And for everyone who played last week... Lennon wasn't buried... he was cremated and his ashes were given to family and friends... Duane won!

Thanks everyone!!! And please send good blood vibes. Treatment can't start on the 8th unless her white count is high enough... and her platelets are up. All of your good thoughts are working. I really believe this... so please stay with us :o) And....

HAPPY BIRTHDAY ALEX!!!!! I LOVE YOU!!!!

This is a filter that the chemo runs through.

March 14, 2008 - Lumbar Day!

Happy Day 31 everyone!

We went to clinic today as scheduled. First it was up to the Oncology clinic and that is where Alex is measured and weighed... blood pressure done, all that fun stuff. The good news here is her blood pressure is finally back down to normal and with NO drugs doing it. Yippee!!! She has been off of the 2 different blood pressure drugs for a month now, but her pressure has still been quite high every time we go in. Today it was awesome. Alex weighed 45.9 for the last three visits and today it was 46.0. SO... I am not allowed to nag her for a whole week about eating :o) That is like MAYBE an ounce. I wish I had this problem... I have gained an ounce sitting here on my butt, typing this! After the examination by the doctor, we were sent down to the RTU (Rapid Treatment Unit) for her Lumbar Pucture (pictures updated). As a side note... Alex and Dan try to think of funny things that RTU stands for every week. I can't even tell you what some of them are!! Anyway... first they put you in another waiting room and then the anesthesiologist comes in and goes over her history... and really talks with you about things. I love all of them that we have met. After that they take her into a sedation room and that is where they do the procedure. I am always able to go in with her, up until the time when she goes to sleep.... The procedure went fine and soon we were taking her out of the recovery room and back upstairs for her IV chemo. Today we opted for the wheelchair as she was still pretty out of it... Since we went down to the RTU today, her chemo was ready and waiting for us in the clinic.... and it was QUIET in there today. It was extremely nice. No one was making signs and flashing them out the window... no one was causing trouble... today was trivia... let's see how many people know this one??? Without using GOOGLE.... Where is John Lennon buried? Write your answer in the guestbook... the winner gets.... well.... they just win. :o)

That was about it today... just a bunch of chemicals designed to make Alex kick this nasty bug! We have an 11 day break now... next appointment is the 25th and then we are DONE with this phase!!! Yippee!!! Keep the blood cell vibes flowing so we can get it over with!!!

Thank you everyone... for all your well wishing!

March 5, 2008 - First trip back to Barnes and Noble

Hi again!

I just thought I would update with a new picture and let you all know that today, the first time since October, Alex has returned to her natural habitat. This is exciting... Picture has been posted. We figured that this was probably the best day to get out. We know she had a few blood cells from yesterday, so... off we went to Barnes and Noble, Alex's old home away from home, and workplace. We ran into Alex's old manager that wished us both well, and told Alex that she has a job whenever she is ready. He was really hoping by next week :)

Oh, another funny things since yesterday... the hospital has contacted me to see if I would sign a release for that photo of Alex. I guess it has become a BIG hit and they would like to use it in one of their Powerpoint training programs. I guess it has gotten around to quite a few people. I will let them use it. If it can make someone else laugh, it will be worth it.

Hope everyone has a great week!