February 25, 2009

Hi everyone!

I thought I would take a minute and update the blog. Alex is doing great! She is on her Spring break right now and is finally able to hang out with a few friends. It is so awesome to see her joining the real world. I have posted a new picture of Alex with NO hat! She has so much hair. Doesn't she look awesome!

She had a clinic visit on the 12th. Everything went well and her counts had finally came back up. She had spent a few weeks with VERY low white counts. I hated sending her to school with such low counts, but luckily she did OK. It is not a great time of year with everything going around. Anyway... things went well at the clinic and is now back on full doses of all her meds. Yippee! Now, hopefully, they can get all her stuff dialed in so she doesn't lose her counts again. I really don't want to be so concerned with taking this trip coming up. The doctor doesn't seem to be at all concerned about it, so?? Not so easy for me.

I hope everyone is doing well. Things here are so much better than last year, so I have no complaints.

I will update when I have some more information.

January 28, 2009 - Back to School

Hi everyone! I have been gone awhile and thought that I better update.

Things have been going pretty well. Alex is hard at it with school and all. I think it tires her out quite a bit but I can tell she is happy. I will update her "back to school" picture as soon as I am done updating. She has her hat on so you can't tell how much hair she has!!! It is coming in like crazy. I hope she will let me take a picture of her with her hat off because you guys won't believe it! Totally different than the other times her hair has come back in over the last year. It is THICK!!

Well... she had clinic 2 weeks ago Friday with her regular monthly IV chemo and she also had a lumbar proceedure with the Methotrexate. She did really really well with everything. Her blood counts were TOO good, so they increased her oral meds again. I told them that she is still sick all the time (nausea wise) and so they are tweaking a different medication and hopefully that will be a little easier on her.

So, that is about all that is going on here. Alex is back to school 4 days a week and I miss her terribly! It is such a great thing she is back though. I will update as soon as I have more information.

Thanks for tuning in everyone!

November 2, 2008 - Alex's first vote!!!

SUNDAY, NOVEMBER 2, 2008 10:27 AM, MST

Hi everyone! I just thought I would update the photo page with photos from this year. I wish I could post more than 12. It is hard to decide on the best 12. I have to remember that 12 is probably enough for you guys :o)

The first photo starts out in January. This was the evening of New Years Day. She was really sick at this time and we went to the emergency room around midnight. She was admitted for 12 days. I really don't have any pictures from the time she was admitted until January. It was such a crazy time that the last thing I was thinking about were pictures. I wish I had taken some now, though. It is just amazing to see the progress and just how much a young body can heal. It has taken so much work from Alex and all of us involved.

The last picture is Alex voting. This is outside the booth, since you can't take a picture inside. Can you believe they wouldn't let a mother take a picture of her baby voting for the first time?? The nerve! I had to promise Alex I would NOT take out the camera again until something spectacular happens.

That is it for today. I just thought I post some pictures from this last year. I am sure you will understand how delighted I am by these last photos.

I will post more later. Thank you for tuning in!

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.