December 30, 2007

Hello everyone...

There have been some questions as to what consolidation is...

Alex's treatment is broken up into several parts. The first month was called Induction. She received a weekly spinal tap to administer chemo and also weekly bone marrow draws. The bone marrow draws were basically done to compare them to the first one and see what progress they were making on the leukemia cells. So far the leukemia is in remission, meaning that on the last draw at week 4 they found less than -.01% leukemia cells. After induction, she moves on to Consolidation. We are really not sure how long this lasts. We think about 4 more months. The first month of consolidation was a weekly spinal tap. When she gets this done, they administer chemotherapy called Methotrexate. This kills any cells hiding in the spinal and brain fluid. A place where those cells love to hide. Also during the first month of consolidation, she receives 2 different IV chemo’s on the first day in the clinic… followed by 3 days IV chemo at home, where a home health nurse comes in… and 14 days in a row of chemo in a pill form. Then this starts all over again on day 29 (beginning of 5^th week). This schedule sounds like it will last for 3 more months after the completion of the one we are on. If that makes any sense. Dan and I pour over the paperwork and we still come across new things that we didn’t understand before. Everything is written up as “days”. She gets Vincristine (a powerful IV chemo that is awful) on days 1,8,15, and 22. That is how it is written up as the first month… then the second month of treatment she gets it on “days” 15, 22, 43, and 50. This was very confusing to us at first because we didn’t know the “days” started all over again after every “session”. All of this is dependant on her blood counts. If her platelets aren’t good, and if her ANC (good white blood cells) isn’t above a certain number, then treatment is postponed. Only the next session is postponed with blood counts. Once the session starts, it is continuous until the end.SO… Alex spent 10 days in isolation because she was at a ZERO white blood count.

So… Starting this Thursday, we should be on a bad roller coaster for at least 3 weeks. Depending on her blood counts that is… A home health nurse will come in on Wednesday and draw some blood, and then they will let us know if her next session on Thursday will go on. We are thinking it will, because Alex’s counts haven’t hit bottom this time. This is good though… I don’t want to prolong this. I would rather stay on schedule and get this next phase over! I say “Bring it on!”.

December 28, 2007

Hey everyone! Well... a few days have past and there isn't much new. We had our clinic visit yesterday and THANKFULLY they didn't admit Alex this time. :o) She was very happy about that. She had another lumbar puncture... the last, for at least, five weeks. This is great news because she has been through these every single week since she was diagnosed. She has to be put fully asleep and the whole process takes her a couple of days to recover, and then it is back on Thursday for another one. After the lumbar punctures we go back up to the clinic and that is where she sits and they administer the IV chemo. We have the most awesome nurse up there, Stephanie. Cool name, I know... but she rocks! Alex was pretty much miserable the whole time. I sure look forward to the time where she can sit there like the other kids and watch TV or talk and laugh... there isn't any of that going on when we are there. I look forward to clinic because I get to ask all these questions that have been building up all week... and I also get to see how her blood counts are doing. This week she stayed steady. VERY good. So far, her white blood cells have not tanked out completely. We think she will become highly neutropenic (no infection fighters) after the next couple of weeks. That totally sucks! When she was admitted in the hospital she spent 10 days at a big fat ZERO. NO infection fighters at all. So everyone send good white blood cell vibes our way.

Tonight I made chili verde... a request by her. She actually ate a little. Very good thing, as she has lost a ton of weight. She seems so frail right now and it is heart breaking. Her boyfriend is here also, and that always gets a little smile when he comes. He has been amazing. Very nice guy!

Another good thing from clinic is we got to dump two of the antibiotics that she has been on... and one pill. Yippee!!! When I figure out how to load pictures, I will post one of all of her drugs. It is scary, and none of them are even chemo! So, the more we can get rid of the better.

I hope everyone has a great New Year!!! I hope ours gets much better!

December 24th, 2007

Merry Christmas Eve everyone!

Well, we are home again. We got home yesterday about 3 and waited around until almost 7pm for all of our IV meds to be delivered to the house. Alex is on 3 IV antibiotics right now... all administered by yours truly. I am getting the hang of it, but it still is a little stressful, and the times make me extremely exhausted (5 times a day). I try to realize that Alex has it a lot worse than I do, and I push on...

Today Alex spent a lot more time "up". That was good news to me. She has been on the couch all day, instead of bed, so that is good news. We have watched almost every video in our library now, so I guess I better see about getting some others. I looked all dang night for an old Christmas movie and NOTHING!!! What happened to those stations that played "It's a Wonderful Life" all day long?? Right now it is hard to pick movies that aren't too emotional. Almost everything sets one of us off... I guess that is to be expected.

Well... this Christmas is sucking to say the least. I am trying to focus on the positive, I really am... but now my mom is sick so she can't come over... Dan is flying, which is good, but it means that Alex and I will be all alone this Christmas. Alex was supposed to leave on the 26th to go to her dad's in Florida, so I know she is quite depressed about that.

Alex's boyfriend spent the night last night... She even smiled when he came in, so that is great! I know her dad is worried about them sleeping in the same bed... JEEZE... if Alex felt good enough to take advantage of that situation, I would say "GO FOR IT!!!" please!!!

I still can't figure out how to post pictures, so when I figure it out, please check out the photo album.

Have a Merry Christmas everyone!

December 23, 2007 - the aftermath

SUNDAY, DECEMBER 23, 2007 12:43 PM, MST

Hello everyone... Alex and I are in the hospital. Again! It is the day before Christmas eve and I am sitting here making this web site about Alex. We were readmitted on Thursday when we came in for her scheduled appointment and she was running a fever and just didn't feel well. The doctor was concerned so here we are.

I heard about this site through a friend of mine that bumped into, in the ICU here at Primary Children's. The doctors are going to send us home today. They think she should be fine to go home for Christmas, but if the fever isn't gone by Thursday, her next appointment day, then she will probably be readmitted. This news does not thrill her. She has been sleeping for the most part of the day so far. We have been up to the "tub room" to soak her groin wound. The doctors took the drain out of her groin on Thursday and we still are advised to soak it twice a day. I am hoping that we are done with infections in this dang groin wound. It has been a problem since they did the procedure with the catheter they put into her brain back when she had the stroke. They tried to in through the left side groin and it must not have worked, so they went in through the right side. Well, the left side incision has given us problems since. It became infected and they had to take her into surgery on the 11th of December to remove an abcess in the groin and that is when they placed the drain. Hopefully it heals now and we are done with the issue.

We are hoping to be out of here in the next few hours. I will come back and update the journal when I have the time at home.

Thanks to everyone who calls and writes all the time. We all appreciate your support.

Things that happened before now...

October 28, 2007 - Alex goes to emergency room and is diagnosed with leukemia (ALL) Highest white cell count that the E.R. doctor has seen.

October 30, 2007 - Alex goes into surgery to have a port-a-cath inserted.

October 31, 2007 - Alex receives her first dose of chemotherapy.

November 17, 2007 - Alex suffers a massive stroke due to one of the chemotherapy drugs.