January 29, 2008 - 7 1/2 hour clinic visit... woof!

Last day of consolidation!!! Yippeee!!!

Hey everyone... we just got home from our 7.5 hour visit to the clinic today. It has been a LONG LONG day. For the most part, things went really well... plenty of good news... but unfortunately Alex needed blood again. This time she got two bags of blood. I am still a little confused as to why all her other counts came way up, but her red blood count was WAY down??? Who knows. Her platelets looked awesome... and her white count is up to 1900 today. That made me happy. I posted two pictures tonight... both of which Alex is being a smart A$$. At least her sense of humor is coming back. In fact, in addition to the "fish" posting, there was another one that I didn't take a picture of. In the clinic there is a bulletin board where you write something unique about yourself on a snowflake and hang it on the board... Alex finds all of these things very infantile and always makes fun of them, (it is a Children's hospital) so... today she took a snowflake and wrote on it "I like to dress up in Mommy's clothes" and signed it with a boys name and hung it on the wall. We all got a really good laugh out of it. After meeting with the oncologist doctor we went down to meet with the Neurologist to see about Alex's progress on the stroke that she had. We were filling out the paperwork there when the last question asked "is there anything about you that we should know?" and Alex puts down "Alex is from Pirate ancestry". The doctor got a kick out of that one... SO... everything looked really good with that doctor and she ordered another EEG, which is like a brain mapping type test... that will be done sometime next week, and if that comes back good, along with the MRI that we will be getting on Monday, Alex may be able to get rid of her anti-seizure medication. Yay! SO... Monday she gets an MRI and Tuesday we go back in and she gets another lumbar puncture and also a Bone Marrow biopsy to make sure everything is still in remission. We learned something new today on the blood clot situation that is in Alex's head. As you know, she is on Lovenox shots twice a day that keeps her blood thin, while her body takes care of the clotting. We didn't realize that when they say "six months of blood thinners", that is exactly what they mean.... there is no benefit to staying on them longer. Whatever stage the blood clot is in after six months is what you are left with. SO... I am really hoping that the MRI that we get on Monday will show some significant improvements.

SO, everything went really well today, even though it was a VERY long day. Alex was pretty much in a decent mood but was getting pretty worn out by the end. She didn't steal anything this week, so good news there...

Everyone... please send some good blood cell vibes... include the red ones, k? I hope everyone has a great week... and Alex is very much up to visitors, so if you would like to visit, please email me. (email address to the right)

I will check back in on Monday, unless something exciting happens before then, and let you all know how the MRI went.

January 27, 2008

Hi everyone!

I thought I would write a weekend update. It has been a pretty decent week since Tuesday. I really think Alex is starting to feel better, all the way around. If you could see the changes in her since a month ago, you would be amazed. Unfortunately, her energy level and her mobility isn't getting much better... in fact, I think she has lost some endurance. I am a little concerned about it, but after calling the oncologist on Friday, they don't seem to be too concerned yet. One of my concerns is her heart... When she was first diagnosed she had an echo-cardiogram. They do this at first to check out the heart... muscles... how the heart is performing and then they use that to check against other scans as the treatment progresses. Some of the chemo drugs can damage the heart, so I want to make sure that isn't happening. With some of the other "rare" side effects that she has had, I don't want to take any chances. The doctor seems to think that her endurance, or lack of, is due to her extremely low blood counts, and that should improve as her counts do.

My husband and I finally had a night to ourselves last night!!! My mom came and spent the night with Alex and Dan and I went to dinner with friends and then we spent the evening downtown. It was a great night... it was such a nice day and the evening was so mild, that we were able to walk all over downtown, have a few drinks... meet up with friends... and then even went to my other favorite restaurant, after dinner, for creme brulee and coffee. It was nice to get away and leave Alex is capable hands. She had a great time with her grandma. Thanks mom!!!! I don't know what I would do without her!

Tuesday is going to be another busy day at the hospital. Alex has her regular appointment in the clinic, and then we head over to the University side and she sees the Neurologist. They have been wanting to see her to check her progress from her stroke. I am really hoping for an MRI soon to see how that dang blood clot is doing. Just to see if there is any, even if little, progress has been made will make me feel MUCH better!!! PLUS, we both are so excited to get rid of the Lovenox shots some day!!! Poor Alex is so black and blue right now from the twice a day shots. It is getting hard finding a place to give them to her, and she has about 5 more months to go... Uggg!!! And another thing... with her platelet count so low, everything bruises her. And I mean BAD!!! Alex joked the other day that she is going to call Child Abuse Services on me. She looks like I have thrown her down the stairs every day since we have been home. I swear that I haven't :) When your platelets are this low, just bumping things causes bad bruising. I would take pictures, but she would definitely call Child Services on me.

I hope everyone is having a good weekend. I will write back in on Tuesday and let you know how all the appointments went.

One more thing... my cousin, Tina, is trying to arrange a blood drive for family and friends. I will keep you updated on when and where. Alex is O+ but, really, please come and donate no matter what type you are. It's a great thing! Alex can actually receive O+ or O- blood.

Please keep the good blood cell vibes coming! We really need them! Thanks for all the thoughts and prayers.

January 22, 2008

Tuesday - Day 15

Hi everyone!

We went to clinic today and it was a busy day there. First we were scheduled to go right to the Imaging Dept and get a CT scan done... of course they had never heard of us, so we sat there for awhile waiting. Finally Alex got another picture of her lungs and we were on our way upstairs to clinic. Alex wasn't feeling all that well today but there ended up being some good parts of the visit. First, her blood pressure is finally starting to come down. We are getting to kick off 1 1/2 pills off the list tonight. Yae!!! If it is still down next Tuesday, all the blood pressure meds are history. Yippee! Alex's counts were the craps. But, we figured they would be. Her red blood cells were WAY down and her white blood cells are almost gone. SO... Alex received another transfusion today (picture posted). If any of you have ever had one of these, you know that they take FOREVER!!! First they have to type and match the blood... each friggin time you do it... that takes a few hours... SO, we sat in the infusion room and watched TV and waited (picture posted). But, while we waited we found out that the lung thingy is definitely getting better and is almost gone. Makes me wonder if maybe it is just some left over goobers in there from the biopsy awhile back... Dr. says "could be", but whatever it is, it is going away. Finally the blood arrived and Alex gets closely monitored the first 15 - 20 minutes for signs of reaction. She has always done well with getting blood, so we were good there. Then we just sat there watching TV while the blood ran in... and then she got her chemo too, which took a whole minute or so... NOW... I learned something new today. Even though this Vincristine can be nasty nasty chemo, there is one good thing... it does not affect blood counts. SO, they think in a couple of days, her counts will start to rebound, and she won't have anything dragging them down again for some time. Which means... maybe we can get out of the house again soon?? Hopefully.

So... here is a funny story... While Alex was in the hospital, they gave her this stuffed animal, snowman, that was given directly to the dog (Murphy) when we got home... Murphy LOVED this snowman. Well, the snowman lost it's head over the weekend and it went in the garbage. Murphy was heartbroken... well, they have this tree in Clinic that is decorated each month, in whatever holiday type whatever we are in... well, right now it is decorated with these SAME snowmen... SO, Alex and I were on our way out of the clinic, and Dan had gone to get the car... so we were walking by the tree and Alex leans over and starts yanking on one of the snowmen...and pulls it from the tree and tucks it into MY coat! (thank GOD they weren't tied into the tree) I DO believe Alex is starting to feel better. She is starting to steal things. We got into the elevator and we were both laughing... and she says "that was pretty stealthy of me". I think the blood did her some good.

On the blood topic... I have never given much thought to blood... the people who get it, or the people who donate it. I have to say that I am so thankful right now for those people who donate blood. It isn't a fun thing to do... and there isn't much immediate thanks for doing it... but I want anyone out there, that gives blood to know... how thankful I am. And to all of you who are able and willing... please continue to give blood. You have no idea who's life you could be saving. This is Alex's 7th or 8th bag of red blood cells... she has also gotten many bags of platelets. She wouldn't be here today without them. SO... whoever you are... Thank you!

I posted a few pictured tonight. The one of the infusion room is where they send you after you are seen in the examination room. The doctor comes in... checks her over and we go over meds and any questions that I have had over the week... they take blood to check all her levels, and then they send you out to the "infusion suite". Here, Alex sits in a lazy-boy type chair and family and friends can sit around her. There are refrigerators with snacks and drinks... and games (mainly for children) and tv's with movies or games. They really try to make your time in there as pleasant as possible. It would be nice if we didn't spend so MUCH time there, but hey... at least we came home tonight!

Ok everyone... keep the white blood cell vibes cook'n! We need them!

January 18, 2008

FRIDAY, JANUARY 18, 2008 12:56 PM, MST

Day 11 - Last day of IV chemo this week

I did it! I am done with the chemo thing! I am sure Alex is glad to have it over also. The 4 day in a row chemo treatments are over for awhile. I have looked ahead in her protocol and I don't see this one introduced again for a LONG time. YAE!!

I am sure Alex's white counts are down to zero now. Hopefully by Tuesday, when we go to clinic, they will be coming back up.

Alex's friend, Valerie, came by last night and they watched a movie together. SO nice to see Alex doing some normal things. She has not been feeling well at all these last two days. They say that this type of chemo she has been getting is cumulative, so maybe we have a few more bad days in store?? The poor thing isn't too bad during the day, but night comes and it is not good! She hasn't been getting much sleep at all and the nausea has been almost uncontrollable. It makes you feel so helpless. I sure hope that the next two weeks will be better for her.

Thank you everyone for all the good vibes! Keep them coming! And thanks for all the nice emails that I have been getting also! It is so nice to see that so many of you are thinking of us.

I have updated the pictures to include me administering chemo, and the chemo kit.

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January 16, 2008 - IV chemo at home

Day 9 - Second day of IV chemo

Today I administered my first chemo without anyone telling me what to do. When I left the clinic yesterday, I was thinking "no biggie, that was simple". Today the pharmacy delivered a HUGE box to my door with the chemo inside and all sorts of safety clothes. So, I suited up and I had it all set out on Alex's lap and had a mini panic attack. Jeeze!!! It was WAY more stressful at home. Dan drove home from work so I wouldn't be alone the first time. First I have to clean off her port (she has a line inserted into her chest that will remain there for the entire 2 1/2 years) and then hook up a saline syringe and I push that about 1/2 way and then draw back until I see blood to make sure I have good blood return... then I push the rest in... Then I get the chemo syringe ready... I hold a cloth under it while I hook that up to her port. I hold that syringe at a level that keeps the bubble inside at the top of the plunger, and then I administered a 1/2cc every 15 seconds. When it is complete I watch the last of it go in and make sure that the bubble does not. You can't clear the bubble in a chemo syringe because you can't drip it anywhere first. Then I hook another saline syringe up and push 1/2cc every 15 seconds for another minute because there is chemo still in the lines... then, after I finish flushing the saline, I hook up a Heparin syringe and push that all the way in and clamp her line. That's it... Simple eh? I was sweating BULLETS!!! I will try to get a picture of it tomorrow so I can post here.

Alex also had one visitor today. One of her favorite teachers from high school, Mrs. Muhlestein from Northridge High. She had such a great relationship with this teacher. I hope she can visit often. Alex loves and respects her very much. It was so nice to see her visiting.

I think I have figured out how to resize some pictures. Since I can only have 12 pictures at a time on here, I will try to put recent pictures and keep them new and interesting. Please check back often for new pictures and news. Today I loaded a picture of her medicine bucket. CRAZY amount of drugs! She takes all of these at least once a day... and most twice... and a few three times a day. We keep track of medication and times on a spreadsheet and check them off daily.

Thank you everyone for everything! All of you mean so much to us!

January 15, 2008

Day 8

Hi everyone!

We had clinic today and actually returned home after the appointment! Yae!! I swear, even what you would think would be a quick visit takes 3 hours. The chemo she received today was administered over 3 whole minutes, and we were there for 3 hours. Now, it will be my job over the next 3 days to give this to her. I actually administered it today under watchful eyes... it was not hard, just a lot of precautions for myself, mostly. Her counts are a whopping 700. Bummer we have lost so many since Saturday. We probably have another 4 to 5 days of losing them before they start to recover.

One exciting thing over the weekend was we took Alex to Best Buy. On Sunday I asked her if she would like to go anywhere... I figured that it would be her best chance to get out of the house while she still had decent white counts. She had gotten some gift certificates for Christmas and she couldn't wait to go. She was pretty tired after just two rows of looking, so she bought a few things and was ready to come home. It was really nice to get her out of the house. This was the first time that she had been anywhere but the hospital or her grandfather's house since she was diagnosed in October. Hopefully some things can get a little better so we can take her out again. I was hoping we could go to lunch on Thursday with my mom, but with her counts, that won't be happening now.

That is about it for today. Alex is resting... she was exhausted after her appointment. She will go back in next Tuesday and get another CT scan done to check out her lung, and then the nasty chemo... Vincristine. Bad stuff that one is...

If anyone has any questions about visiting, please email me at sburbank35@aol.com AND please, keep the good white cell vibes happening. Thanks so much for all the thoughts, prayers and messages. They mean so much

January 12, 2008 - Home at last, home at last!

Day 5

Hi everyone!

Good news! We are home! That is why my update is a little late today. It has been a busy day. It takes FOREVER to get discharged. Alex is free from IV's (until Tuesday) and home resting. Her counts even went back up to 3000 today and her temp was actually 98.5 an hour ago!!! You guys are awesome at sending chilly vibes!!! I am going to enlist your help all the time!!!

I guess we don't qualify for in-patient rehab because you have to be able to withstand 3 hours of exercise during rehab and Alex can't do that. That leaves me wondering if she didn't have us, where would they send her next?? I thought in-patient rehab WAS exactly for people who weren't ready to go home... who need to get stronger? hmmmm... some things in this world I just don't understand. My world is CHUCK full of those things these days.

So the plan is... home until Tuesday (if the fevers stay gone) and then she will have one day in the clinic for IV chemo, and then 3 days of IV chemo at home... and guess what the fun part is??? I will be getting chemo certified so that I can administer this at home when she has these weeks where it is 4 days in a row. Oh, the things that I never thought I would be doing.

Please keep sending your cool vibes... your white cell vibes and MOST of all, some more energy vibes (and in the back of your minds, keep those lung thingy vibes in there too)... and I will update you on Tuesday unless there is something exciting to tell you all before then. Thanks so much for all your messages. I read them a few times a day.

January 11, 2008

Day 4 (the last of the IV chemo this week)

Hi everyone!

Well, not much has changed since yesterday. Alex's count took a small hit and now we are at 2800, so the chemo is working... by next week when they start again, it could be ugly. BUT... it appears that the fevers may be going away. SO, I think we will be out of here tomorrow. Let's hope. Alex is sooo ready to go home. I am hoping to get her into some in-patient rehab though. We will see what we can work out with that today. I really think it would do her a lot of good to be there. I am having a hard time motivating her. I am at a loss as to what is the right way to do it, and all this hospital time has really made her more weak than before. AND that, we can't have. It's really a catch 22... if she gets up and moving and doing the excercises she gets nauseous... when she lays around all day, I can't hardly get her walking. And I really think that is worse. It is very frustrating. I'll let you know what happens.

Thanks everyone for all the thoughts and prayers! And all the good vibes!!! We need energy vibes now, k? I know... I am asking for WAY too many vibes, but you all seem to do very well at this!

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.