October 28, 2008

Today is the one year anniversary of Alex's diagnosis. What a night that was. I will never be able to drive by St. Mark's Hospital without thinking about that emergency room visit. There are so many things that I don't remember but this night has stayed vivid in my mind. Let's hope the next year brings better things and less complications!

On the clinic update... Alex had her first treatment in the maintenance phase. Not too much to celebrate there besides it officially starting and our next appointment isn't until November. Very wild! Alex had a lumbar puncture and IV chemo... and we also picked up 6 different prescriptions. We got her a month long "pill box" to put all the new drugs in. She was thrilled with this idea. NOT... but this is part of her treatment and cannot get forgotten.

There will be a nurse that will come every couple of weeks for awhile to draw a CBC and make sure her counts are staying within a certain range. The oncology clinic wants her counts low enough to be killing any lingering cells, but high enough so she can live normally.

Another thing that I thought I would update you all on... something I haven't mentioned here as we haven't had enough information to pass on up until now... Since Alex was diagnosed in 2007 and she was only 17, she is granted a WISH from the Make A Wish Foundation. Any child with a life threatening illness is eligible. She has mentioned many many things but finally decided on wanting to go to Italy next year. Today (wild since it is officially a year today) we found out that her wish has been granted. SOOOO cool! So, the Make A Wish Foundation will fly Dan, Alex and myself to Italy for one week next year. We are going to pay the additional money and take Dan's sons and my mother is going as well. We are also paying to extend the trip. This is such an incredible foundation. First Alex wanted to meet Noam Chomsky... then Jon Stewart and Steven Colbert... Then decided on a "Travel Wish".

I hope everyone is having a great October!!! I will update as soon as I have more to tell :D (big smiley!)

Thanks again for all the messages! I absolutely love them!

October 22, 2008

Hello everyone. We went last Tuesday to clinic and it was a very quick visit. Alex did really well with it. Her counts weren't all that great, but the treatment went well. Can you believe that this last regular treatment was just 2 weeks shy of a year? Maintenance actually starts this week. The home nurse will come tomorrow and draw blood to see if her first treatment of maintenance can start on Friday. She will get a lumbar puncture every 3 months, and of course we found out that it is at the start of every 3 months, so that means one on Friday. Hopefully her counts are good and she can get it going. Please send good blood ju-ju so Alex can get going on maintenance. Also... I don't know if I told you all, but I took Alex to Westminster (her college) and dropped her off last Wednesday to sign up for all her classes in January. She didn't want me to go with her. It was a very strange feeling to be dropping her off somewhere on her own. It's a great thing, but it felt like the first day of kindergarten again. She thinks I am crazy, of course, but all you mothers would understand. Everything went well and she actually met with one of her old professors. She is hoping to find some part time work there when she starts school. Also, Dan and I went up to her grandfathers and brought her car back home. She thinks she is ready to start driving again. Dan and I both have been out driving with her. She is doing really really well. It is a scary thing for me. You all would NOT believe how Dan is with my child. Of course, those of you who do know Dan would believe it. I don't know what I would have done without him all these months. Him and my mother. Dan makes sure he is off work for every single treatment if he is in town. He gladly does for Alex as if she is his own. I feel incredibly lucky to have found a man that treats Alex with a love that you can see and feel. Dan is, by far, the best man I know. My mother... well what can I say about her?? She is the best woman in the world!!! I will tell you, it has been a very very hard year. But, even in the very worst of times, I knew that I never was dealing with anything alone. There will never be a way I can thank Dan or my mom enough. Although I do know that both do so out of NO obligation, but out of love. Another thank you that I want to send out is to all of you! I mean that from the bottom of my heart. You have no idea what all these messages have meant to me. There have been some very stressful times and I can come here and read such positive things and go away with a different perspective. You have all given me more than you can ever know. Thank you! I will keep updating the site when I have things to report on. I know that there are many out there that read the blog and love to know how Alex is doing. Please send good blood ju-ju for tomorrow :o) I count on all your blood vibe sending. I really do.

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.