January 10, 2008 - A bag of fat please

THURSDAY, JANUARY 10, 2008 10:24 AM, MST

Day 3

The white cells are 3000 today. Too cool. The fever, however, is still here. With this count, we could walk around somewhere... just not in a hospital, so it really doesn't give us much freedom here :(

We had an "ok" night last night. Unfortunately the dreaded TPN and "fat bag" has showed back up on our IV pole :( Alex is losing too much weight, so she is back on IV nutrician, and a side of fat (lipids). These combined with her maintenance fluids had us up going to the bathroom every single hour through the night. We won't be out of here, now, until she kicks the food bag habit.

Alex had two visitors last night... first her friend, Valerie, from Westminster stopped by. Alex hasn't seen her since the night we picked Alex up in horrible pain... the dreaded night that I will never forget. Alex seemed to have a really good time visiting with her. I think these types of visitors are very important for Alex's improvement.

Also... Mrs. Sauve (pronounced So-Vay) stopped by. She has always been a favorite of Alex's. This was Alex's 4th and 5th grade teacher. Alex has always kept in touch with her, and they have gotten to be good friends. I will tell you all, Alex would not be who and where she is today without this woman. She is so very special! She told me last night that she has taken a new job and it broke a little of my heart. I am so sad for all the students that will not be getting this unbelievable lady for a teacher. Good luck to her on her new adventure! Alex loves visiting with her, so I hope she comes back soon!

I hesitate to put this in print, but... they aren't going to do anything about the lung thing at this point. The surgeon doesn't think it is anything that she can "for sure" go in and grab that exact thing... so... they are going to start Alex on another anti-fungal medication... a better one than before because it is oral and I won't have to mix it up at home and administer it IV. Yae! So... another scan in a couple of weeks to see if the lung thing looks better.

As for the fever... we are going to do our "day 4" treatment tomorrow, and then we are blowing this clam bake on Saturday morning :o) If the fevers don't go away at home in 24 hours, I guess we are back. It sure makes me hesitant to go home??? you know...

Thanks everyone for the white cell vibes... they are still working! And also, thanks for the good lung vibes. Who knew you all would be sending such strange vibes, eh? They are much appreciated!!! Ok... a new one to work on everyone... please send NO FEVER vibes. Let's see how good you all are on those :o)

January 9, 2008 - To fungal or not to fungal?

Hey everyone!

Well... first the good news. Alex's count hit 2300 today!!! See what I mean... most of the time they take these leaps. Yippee. That means we have more to work with as the chemo knocks them back down. I am really glad to see we have more to fight with today.

Now, the not so good news... I guess they are seeing something funky again in the left lung. I don't know what it is about this left side, but it hates us!!! SO... it isn't a round, little node thing like before (the one they removed in the same lung in December) but now they are saying that it is a strange gray area and so they have brought in the Infectious Disease team (this is not a team you want on your case). These are like the haz-mat people. Uggg! SO... they are comparing it to the last CT scan, and they are going to see how the fevers go the next couple of days... and they are talking with a surgeon to see if she thinks it is even something she can take out and biopsy. This procedure really sucks. They go in through the side of the chest... deflate the entire lung to do their work... then cut out the area and staple it... and then there is this chest tube sticking out from the side of her for a couple of days and that goes into this thing on the side of the bed that sucks out fluids... and ANOTHER thing we get to drag with us to the bathroom. Oh, and you have to keep it low to the ground as you go... so here I am helping Alex, dragging her IV pole with me... and with that same hand I am trying to hold this plastic sucker maching that is coming out of Alex's chest and I have to make sure there is enough slack or it pulls on her. Uggg! I need another set of hands as it is. Let's hope they figure something else out. Her oncologist wants it tested if the surgeon can do it though, so I think we are out-voted. Damn! The poor kid just got over the last operation.

Everyone pray that they don't have to operate again... Those would be good prayers to have answered.

Thanks for all the white cell thoughts. See... you are all doing so good. Now, if you could do the same with the lung thingy, that would be awesome!

January 8, 2008

Hey everyone!

Well, the white cells hit 1200 today!!! Yippee!!! Nice going everyone!

The chemo is officially going to begin today. The start of the second Consolidation series! The beginning of the 3rd month. SO... now we are back on "days". This will be day ONE and we will have four days in a row of IV chemo. The oncologist came in and said that because the one IV chemo can cause fevers, we will most likely be kept here until the 4th day is over. Which is fine by me. I would rather be here having them monitor her fever over playing the thermometer game at home and making a middle of the night ER visit. Alex is even in agreement on this issue. Before they start the chemo this afternoon, they pump her full of fluids at a fast rate... like 3 bags worth... I guess this type of chemo can damage your kidneys if you aren't getting rid of fluids constantly. Hopefully they will begin soon so the effects of the fluids don't take us into the middle of the night.

The chemo treatment is pretty much a non-event. They hook it up to the IV pole that is already hooked up to her and it only runs over 30 minutes two different times. BUT, with that said, I can't tell you how scary, and emotional it is to sit there and watch this poison run into my baby... even though it is necessary for her to get better.

Last night was very nice... My mom came up and visited and it allowed me to go to dinner with Dan. He took me to the Market Street Grill, and I had a real dinner... with fish and chowder... and of course, for those of you who really know me... BREAD!!!! And a nice glass of wine!

Also... the CT scan results were good. I think another department has to read over them also, but the doctor said that he didn't see any fungal balls... and everything else looked good. So YAE!!

I hope everyone can send really good thoughts and prayers today... good nausea thoughts... (it would be lovely if we could get another day of white blood cells too before they plummet)

January 7, 2008

Another day in the hospital... and most likely tomorrow too.

This morning has been eventful already... First, thanks again everyone for good white blood cell thoughts. Alex went up to 900 today. They are climbing, but boy are these the slowest rises that we have had. BUT... they are going in the right direction. It is just so hard not to be frustrated with the slow results. SO... I told you all about Alex having foot pain all of a sudden. They are going to do an x-ray today and see if there is "maybe" an infection there somewhere around her foot??? And also, she is going to have a broad CT scan done today to see if there is an infection hiding anywhere else... or if we have another fungal thing happening... I SURE HOPE NOT!!! They can't do the CT scans until the white cells come up because there are none of them to watch... when you have an infection the little white cells all hang out where the infection is... Now, maybe, they will see if there is something somewhere.

SO... white cells are in line... platelets are still in line (but dropping slowly so they need to hurry). The oncologist came in and said that they want to watch the fever for today... but the chemo will most likely start tomorrow. Then it will be a fun filled 28 days (and probably a visit back here at the end due to low blood counts again). But, at least we are getting started. We don't want any of those little sleeper leukemia cells to wake up and start causing trouble... we need to kill them in their sleep!!! At least we don't have that crummy Vincristine chemo this week. Yippee... and no lumbar puncture either! We have learned to take pleasure in very small things these days. Like... I had the most wonderful cup of coffee yesterday at home... just sitting there. You don't think of things like that until you aren't able to do them.

And yes... I am dining on peanut m&m's for the protein, of course. I also had a side of cafeteria nachos last night. Yum-O!!! Where you pump the yummy cheese out of a plastic machine. Super healthy huh?

Oh... another thing... Alex has started on this appetite enhancer pill a few days back... well, did some research on it last night (because this cocktail of pills has me a little nervous) and it is the same chemical in marijuana. SO... it is suppose to help with nausea as well as give her the munchies :o) Let's hope it starts working. She has lost a ton of weight so far.

Thanks everyone for keeping us in your thoughts and prayers, and I will check back tomorrow and tell you if the chemo starts! Keep your fingers crossed for some dang answers. (and little white blood cells too)

January 6, 2008 - A blast from the past

SUNDAY, JANUARY 6, 2008 11:04 AM, MST

January 6, 2008

Everything is pretty much the same here. Alex’s counts reached 800 this morning. That is awesome. I am hoping that her next chemo session can begin tomorrow. I think they will do treatment with a fever. Let’s hope. I know the doctors don’t like to prolong things either, so we’ll see.

Dan stayed with Alex last night, and I was able to go home and take a much needed shower, catch up on some laundry and sleep in my own bed. He has been amazing through all of this. I don’t know what I would do without him. He is so good with Alex. He is eager to learn everything… like hooking up IV antibiotics for her… and he gives her Lovenox shots when I am not there (blood thinners that she has to have twice a day).

Alex had a great visitor yesterday. One of her teachers from high school came up. Nancy Clark. This teacher has been amazing in Alex’s life, and it seems that Alex was the same in hers. I tell you, there isn’t anything that makes Alex smile like her favorite teachers. I hope more of you will visit. You people really are such pivotal people in Alex’s life. She would not be where she is today if it weren’t for a few of her teachers. You all know who you are. Please, please come visit.

They do something up here at the hospital, for all of the cancer kids, called “Colors of Courage”. It is a bead building necklace type thing… more of a long, lanyard really. You get a bead for all sorts of different things you go through. For example… Every time you have a Bone Marrow Biopsy you get a “star bead”…Every time you are admitted into the hospital you get an “orange bead”… You get this cute little painted, wooden bead when you start to lose your hair… For every test or ex-ray or scan, you get a “glitter” bead… There are 28 different beads in all. There are some beads that we DO NOT WANT… I would say the lanyards are about 4 feet in total length and Alex is already working on her second lanyard and she has only been collecting beads for 2 months! That is just unbelievable to me. It really puts everything she has been through in perspective when you see all the beads.

Thank you everyone for sending good white blood cell vibes. They are working… keep them coming!!!

January 4, 2008 - A drug gone wrong...

FRIDAY, JANUARY 4, 2008 7:35 PM, MST

Hi everyone. I can't tell you how happy it makes me to know that so many people are praying for us... and following Alex's story.

I am sitting here catching up on my "Friends" episodes. Thank God they never seem to get old for me. Alex is finally resting peacefully next to me. We tried a different anti-nausea medication today because NOTHING seems to be working, and she had a horrible reaction to it. I think it scared us both pretty bad. She became SUPER twitchy... squirming all over the bed in rapid movements... and crying while she was doing it. I quickly got the nurse and she explained that this happens with some kids... and that it was normal and not dangerous... Yeah... tell that to my heart! Dang!!! I think she has gotten all that through her system now. We won't be trying that one again. I really wish Alex would quit being so rare and different. Alex's feet have started to hurt also... something that can be caused by the Vincristine chemo medication. The fever is still holding strong today too, so our hopes of going home this weekend have probably gone out the window. Her ANC (good white blood cells) have stayed the same since yesterday. Not horrible, but I was really hoping they would double again. Maybe tomorrow. If they would come up, they could work on whatever is causing the fever.

I hope everyone has a great weekend... please pray for Alex. We need all we can get.

January 2, 2008 - Back to the hospital with you!

Happy New Year everyone!

Well, we are back in the hospital. Alex had a fever last night and the oncologist wanted to see her in the ER. It was a breeze though... we walked into the ER and they said "this must be Alex" (she has to wear a face mask when she goes outside the house). The oncologist has set everything up with the ER and they were expecting us. They took us right back to a room and drew some blood. NOW, depending on what grows on those cultures, we will see what to do about the fever. I have been doing a lot of research and all of this is extremely normal. That has been a good thing to find out for me. Now I don't freak out everytime we have to come back in here. It really isn't a whole lot better at home for me... but the food is better there :) I can't even begin to tell you all how dismal the food is here. I am starting to eat M&M's for dinner because they are the only thing that tastes good.

Our New Years day was nice... My mom came over and we made a big dinner. Alex had missed Thanksgiving dinner, so we made it yesterday. I had some friends over and we had a great time before Alex's temperature went out of control and we had to come here.

Today we are sitting in the hospital room waiting on blood. Alex's red blood cells were low... and her white blood cells were non-existant, so... even with all the good white blood cell thoughts, her next round of chemo is postponed. BUMMER! She is extremely neutropenic right now, so we are pretty much in isolation in her room. She isn't even allowed in the hallway without a mask on. We are hoping all her counts improve by Sunday/Monday, so Chemo can start again on Tuesday. Hopefully...

One nice thing about this hospital... I know everyone on the floor now. All the nurses and doctors are so nice, and they know so much about Alex now, that I feel like she really gets great, special care. Alex's nurse today is Suzanne. She is awesome. She actually became a nurse after going through this exact same thing with her 2 year old daughter... Her daughter is older now and doing great. She definitely knows how I feel sitting here.

Thanks to everyone that is signing the guestbook... I am reading the messages to Alex. Please keep signing... it is a great way to send her a message.