January 31st, 2011 - We're Back!!! Day 38

Hey everyone!

Just a quick little update for all those that aren't up to date yet. We are back in the hospital. It's nothing serious (we think) just a low fever.

We had an appointment today at 8:00am. We arrived clinic and while they were doing Alex's vitals the lady says "oh, did you know you had a fever?" ummm, no... SO, here comes 2 nurses with a crap load of vials for blood draws. They did 6 different cultures in addition to many different labs. They double checked the temperature on a few thermometers and decided that "yep, indeed a fever." That means we are in the hospital for at least 48 hours. The process goes like this: Once there is a fever, they take 2 different cultures out of each of Alex's lumens. One for bacterial and one for viral infections.... they put them in these bottles that look like some type of condiment (Tabasco) bottle... those get sent off and watched for any growth. They also check urine for UTIs. Then Alex gets admitted and sent to a room. Luckily the cancer floor has been pretty quiet over the last few weeks and we had a room within minutes. They started antibiotics on her immediately. After about 20 minutes they came in and said they wanted to do a chest x-ray on her as well. SO... off we went and had that done. It was very quick. I have no idea what the results of that was. I am hoping to find out tomorrow.

Blood counts today were pretty awesome though...

ANC - 1,800 (a bit lower than Thursday but obviously they are busy fighting something)

Platelets - 100 (this is such an awesome thing to be seeing this early!)

HCT (red blood) 27 - still low but not low enough they are going to transfuse yet. Possibly tomorrow?

That's about all I have tonight. I don't know a whole lot yet. So... I will update tomorrow with any new information.

Thanks for being here everyone!

January 27, 2011 - Back To Clinic - Day 34

Hi everyone!

Well, it's been an exhausting couple of days at home. But so far Alex has survived me taking care of her. Nothing too much has been going on. Just trying to settle into a routine of medications and cleaning. The TPN at night is a pain! It's time consuming to get it ready and it's just no fun. That said, we have been dealing with it. There was a slight learning curve to the process where we had to throw one bag out... but I chalked it up to not having my nightly glass of wine first. We remedied that the next night. Tonight should be the last night of TPN. If I can get her calorie count a little bit up from what its been, then they'll leave it that way after Monday's appointment. Anyone familiar with IV situations knows that a beeping pump is one of the most annoying sounds on earth. Well... when you turn it off the wrong way it REALLY beeps and you cannot turn it off at all... a message was displayed saying "CALL - CODE" SO... I had to call the pharmacy today and the guy says "what's the problem?" and I say "I don't know... my pump is coding." I crack myself up sometimes. :) (the guy was nice enough to laugh though)

Today we had clinic. For a change, I was looking forward to going. It's been stressful at home after such a big ordeal. It was nice to go into clinic and be assured that everything was going as expected. Our appointment went very well today. The appointment started with labs... then we waited until most of the results were in before seeing the doctor. The doctor came in and checked her over. He said he saw no sign of Graft vs Host disease. That is an awesome thing. Of course that can rear its ugly head at any time... which totally sucks to know. BUT, her blood counts were excellent!!!

ANC - 2,400

Hct (red blood) - 27.8 (low)

Platelets - 87 (this is amazing!)

That's about it to report on today. We go back to clinic on Monday for a bone marrow biopsy, the Chimerism test, and also more labs. It's my birthday on Monday so I told Alex that all I wanted for my birthday was a clear bone marrow result. Here is a little photo blog of the TPN situation here at home.

Sending out a "Thank YOU!" to my cousin Lorna for bringing us a TON of frozen dinners last night! You have no idea how much that helps. Had dinner last night and tonight thanks to you! MERCI!

Thanks for tuning into our story! We appreciate the support we get from everyone!

My cute little puppy Roger, sleeping at Alex's feet.

The special backpack for the pump and TPN

The two vials of vitamins have to be drawn up into the syringe and then injected into the TPN bag.

IV tubing with filter

Vitamins are ready to go.

Injecting vitamins into the bag

The bag is in the backpack and ready to go.

The pump fits inside a little pocket.

A flap on the front of the pack makes the pump easy to get to.

January 24, 2011 - There's No Place Like Home! Day 31

Hi everyone!

Well, we are home! YAY! It was a pretty uneventful day. We spent most of it just waiting for the prescriptions to be ready. Alex came home on about 12 different medications. These vary is the times they need to be taken in a way that should be ooodles of fun for everyone. She has meds due at 2am, 8am, 10am, 2pm, 4pm, 6pm, 8pm, and 10pm. See why I wasn't so hip on bringing her home. This doesn't include the IV TPN liquids that we have to prepare (injecting vitamins into the bags) and then run through the pump. I've had to cut back my wine to a level where I can accomplish all this :D And none of these meds are anti-nausea or pain meds that can be taken every four hours. I'm trying to decide between the cleaning schedule and the med schedule, when I am going to sleep? I am sure it will mellow out as a few days past.

Well, let's talk blood counts today. These are EXTREMELY good!

Hct (hematocrit red blood cells) 28.0

Platelets - 46

ANC - 1,300

These are incredible counts. Her platelets have been steadily climbing so the docs tell me this is because those have engrafted as well. These are usually the last to engraft and take most patients a LONG time for this to happen. Her ANC was actually 1,800 yesterday which is on the very low end of normal! That is so awesome. They've dipped again today, but this will be common as all her meds are designed to suppress the immune system so things don't go crazy inside her marrow.

We had packed up most of Alex's room last week. We had very little to do today in order to blow the joint. It was a very peaceful discharge. We had many people come back and congratulate Alex... some with tears in their eyes. It's a wild feeling to walk outside those doors with Alex after such an ordeal.

Right now we are waiting on the home health team to stop by. They don't come until 9pm because I don't start the bags until 10pm. They will run over 12 hours. I have never ran a pump system before although I have administered my share of IV meds. This will be a new experience and I am a little nervous about it. I am sure once I learn it will all be OK. The entire bottom of the fridge has been designated to IV nutrition. I will take a photo of the bags tonight and post later.

Alex has been saving up for an Apple MacBook since the beginning of last Spring. Dan, my mom and I decided to throw in a bit of money for a "Welcome Home" present today. She has actually been 'up' playing on it. It's been nice to see her distracted by something. This kid that LOVES to read, hasn't read a thing in 41 days. She just doesn't feel well. I hope that will change soon. Even a homecoming like this is bittersweet because you can just see by the look in her eyes that she doesn't feel well. It took a LOT out of her just to walk down to the car, the ride home and deal with walking into the house and into her bed... didn't even stop to go to the bathroom... did not pass go, and did not collect two hundred dollars :D I gotta say though... as I look down and see her resting on the couch with Dan on his computer next to her... the dog sleeping at her feet... It's good to be home!

Alex is outside! After 41 days she is in the car and ready to go home!

Alex playing Phase 10 with her dad

One of our favorite nurses - Boston Kathy - Hilarious woman that has just joined roller derby. I can't wait to go watch her. She's a riot! (Alex wants everyone to know she is smiling under her mask:) Alex loves the "LifeFlight" hoodies. Her dad bought her one for Valentine's Day before he left.

These are Alex's daily meds

I.V. supplies

January 20, 2011 - To Go Or Not To Go - Day 27

Hi everyone!

Things have been crazy since yesterday morning. I got a call from Alex's dad that said he just had talked to the doctors and they said Alex could go home anytime she wanted. This came as a big shock of course. We were definitely NOT ready for her to come home yesterday. After talking with her dad I received a call from Alex. She was in tears and said that she just didn't feel like coming home yet. She was apprehensive about a lot of things. I told her not to worry about anything, that there was no way we could bring her home before Friday. Then I told her that if she wasn't ready by Friday we would figure out another day. NO pressure. I then managed to confirm appointments with a house cleaner and a carpet cleaner for the next couple of days.

Today up at the hospital I met with the dietitian and the pharmacist. We went over the drug schedule and the food preparation information. The medication aspect of things is huge. Alex will come home on several different drugs and also on I.V. nutrition. They say this is normal. She will most likely be on I.V. nutrients for a couple of weeks and I.V. fluids through the 100 day mark. I guess they will set her up with a backpack type thing that is easy to pack around. The rest of her meds are oral and should be easily tolerated.

The cleaning list for home is HUGE! The daily cleaning list is:

vacuuming

dusting

taking out all garbages

wiping down all kitchen and bathroom surfaces

cleaning and sterilizing bathtub before each use

The weekly cleaning list is worse... this sounds like a lot of fun

clean inside and outside of the refrigerator (all compartments)

damp cleaning walls and ceilings

cleaning and sterilizing heat vents

cleaning and sterilizing bathroom

towels changed daily and sheets changed every other day...

After meeting with everyone today, including the social worker, Alex decided that she is just not ready to go home tomorrow (Friday). She is going to wait until Monday in hopes that they are controlling her pain and nausea better than it has been this week. The doctors seem confident that she is ready to go home, but I don't see Monday being any worse than tomorrow if it makes Alex feel better. I think it's going to be an emotional transition just as much as a physical one for her. For me... and the daily cleaning list above... I am totally OK with her coming home 3 days later. It sounds bad, but just having the weekend to prepare a bit better makes me feel a bit more settled. BUT... Monday is Day 30 and should be the day she can have that Chimerism testing done. YAY!!! Oh, and learned it took about a week to get the results.

Alex has also had a couple of wicked headaches today. We aren't sure exactly what these are from but I sure would love to see them go away before coming home. I would also like to see her take a few more walks and a few flights of stairs. Once she comes home she is going to have to navigate those here, so...

Otherwise everything looks great they tell me. Her ANC is holding steady at 800. They are REALLY excited that her platelets haven't dropped at all in several days. The doctor tells me that this is a HUGE success and will play a big part in how often we'll have to go to the clinic in the weeks to come. We will start out going to clinic twice a week at first. If they see that the platelet level is stable, they will move us to once a week. I have to keep track of every morsel of food and drink that Alex has. The sooner she is off I.V. nutrients the better!

Car detailed - check

Carpets cleaned - check

Dogs cleaned - check check

House cleaned - (tomorrow check)

many single food items - check check check

Well, that's about it for today. I will update over the weekend with any new information. As usual, thanks to everyone for tuning in.

January 17th, 2011 - Now We're Cook'n - Day 24

Just a short little update to say that Alex has engrafted! YAY!!! Yippeeee! Her ANC shot up overnight from .400 to 1.100! It's incredible and the doctors were pleased. WooHoo!

Other than that not a lot going on. Alex really is not feeling well. She is extremely tired. I bet she slept most of the day today. They say that her body has been working so hard to get better that this exhaustion is normal. We did get her out of the room today and we walked down the hall and back. It was a long hall and a HUGE walk for Alex. She hasn't walked anywhere but the bathroom since the 16th of December. This totally wiped her out. I am hoping we can get her out of the room again tomorrow. You would think she would love this... but she doesn't. She isn't a kid that really cares if she should walk or not. Me? I'd be going crazy to get out of the room.

Food isn't happening all that much either yet. She is eating Carnation Instant Breakfast, which we have nicknamed "Cibs." She is also eating some cereal and soup on occasion. It takes a LOT of nagging to get her to eat anything.

So... today is the 17th. It's been 5 months now since our lives changed again. The 17th is starting to be a bitch of a day. November 17th 2007 is when Alex suffered her massive stroke. I feel like we've almost been living at the hospital for these last 5 months. For the most part we have. We have spent 82 days in the hospital since August 17th. Damn! We need to quit doing this!

That's about all I have tonight. I hope Alex is feeling a bit more perky tomorrow. It would be nice to see her smiling again.

Thanks for tuning in on this exciting day!

January 16, 2011 - Day 23

Happy Sunday everyone!

Sorry the blog has been so quiet but there has been very little to report on. That is still pretty true today, but I know there are several people that are curious as to what's going on so I thought I would write a short update.

It's day 23 and there is a little progress. Not a lot, but a little. Blood counts today are:

WBC - 1.5

Hct - 27.2 (low but not giving red blood today)

Platelets - 14 (very low platelet count)

ANC - .400

Since the last post the ANC hasn't climbed at a rate that is satisfactory so they have started Alex on neuopogen. This is not quite the same as before. Instead of shots they are doing it I.V. which is much better for Alex. Not sure why they don't always do it this way, but BMT patients always get this in an IV form. Alex's platelets are also really low today so she will get another bag of those. Hopefully no reactions!

The doctors stopped by today and were encouraged by the ANC level from today's labs and are quite confident that we'll see the much anticipated .500 mark tomorrow. Let's hope! To be considered "engrafted" she really needs to hit this mark for 3 consecutive days, but our doctors say that 2 days is fine and think if it hits tomorrow we can pretty much say the same thing.

One cool thing that will happen in a few days... Day 30... is a Chimerism test. You can read about it HERE This is a test that will show how many of her new cells are the donor cells and how many of them are her own. We are really hoping for a big percentage of these to be donor cells. It seems we are always waiting for something. But, it does appear that things are moving along. It'll just be nice to find out that the donor cells are working and not Alex's own bone marrow. With a leukemia that has been so resistant, we really don't want her own bone marrow coming back. SO... 7 days and we'll get that test done. I'm not sure how long it takes to get the results of that. I should have asked... :0)

That is about all that's going on here. They have moved the IV anti-rejection drug, Prograf, to an oral form. It's still not quite dialed in yet. Hopefully they get the dosage on the right track soon. I talked to the doctor about this today and why it's so hard to get the right level. He said that there are many changing factors in the drug. How it metabolizes changes daily. There are many changing things going on in the liver that compete with it... and it always has to be adjusted. He said this will be ongoing until she no longer needs to be on it. They are also switching over some of the prophylactic antibiotics to oral meds. This all needs to happen in order to come home. Hopefully she tolerates all of them well.

I hope everyone has a great Sunday. And I hope I can update tomorrow with a 500 ANC count! Dang it!!! Let's get this show on the road!

Please keep sending good blood cell vibes!

Here's Alex's white blood cell in a petri dish with little red blood cells. Cute or what!?

These are little "Mad Cow" cells... You can get almost anything in a petri dish. You can find them HERE

January 12, 2011 - Time For A Cell-Abration!!! - Day 19

Happy Wednesday everyone!

Sorry I haven't posted for a few days but there hasn't been much to write about for day 15, and 16. They were miserable days for Alex. Her rashes were driving her crazy and her surgery site was very painful. We've been in the hospital a month today! YUCK!

Day 17 brought on another bad reaction to platelets so they'll be pre-medicating her for those from now on. They also made note of the person who donated the platelets and she will no longer get those.

Today we have great news! There are cells a happening! Yesterday we had our first signs of cell action. The labs came back yesterday with a white blood count of .3 (which is very low) and some monocytes. This was promising news. Today the news was even better! Alex has a WBC (white blood cell) count of 1.4 This is amazing! BUT, the best part is... she has an ANC today of .100 While this isn't necessarily called "engraftment", she is well on her way. They say it should happen in just a day or two.

I haven't been up at the hospital very much in the past couple of days. Alex's dad has been here and I had some friends fly in from the Chicago area. I have to say, I have the most unbelievable friends in the world! One of my bestie's husband owns a heating and air conditioning company (Arctic Heating and Cooling). Well, they contacted me a few months back and told me they wanted to put in this special light/filter in our furnace to help Alex. It's a PHI light cell, and it's used in many hospitals. These two very special people flew out here for a few days and put this unit in our furnace. I am constantly amazed by people. They wanted to do something that could help Alex and this is what they knew they could do. Amazing! Thank you Kristy and Jeff SO much! I can never ever thank you enough for all you do. I have to send another "thank you" out to a very special woman (another that I have met traveling) Judy. Your generosity is so appreciated! Thank you SO much for everything! I am so blessed with the friends that I have!

That is about all I have for today. It's such great news! Maybe this cute little thing will let me take a picture of her soon so you can see how great she is doing. They say another couple weeks here in the big house :0)

Again... thanks for tuning in and for all the support everyone shows our family. It's incredible!

Blood counts for today are:

WBC - 1.4

Hgb (hemoglobin) - 9.9

Hct (hematocrit/red blood) - 28.9

Platelets - 16

ANC - .100

This is a White Cell... he was a gift for Alex today. Frig'n cute or what?!

This is how many different things they have running into Alex's body

January 7th, 2011 - Two Weeks!!! 14 days!

TGIF everyone!

Well there isn't much to report on which is good news. The day has been pretty quiet thank GOD! No bloody noses so far. We've been in the hospital for a little over 3 weeks now and 2 weeks since transplant. Unbelievable. I so miss Alex around the house. Our oldest dog sits outside her room and looks at me with sad eyes. Dan and I (and the dogs) will be very glad to get her home.

The blood counts were a fluke. We got nothing today :0( boo! Here is a rundown of the counts today:

Glucose 126 (high)

Hemoglobin 8.2 (low)

Hematocrit 24.2 (low)

Platelets 25 (low) (so yesterday she got a bag of platelets in the morning bringing her platelet level of 12 up to 37... and she went down to 25 overnight)

They say that red blood is on the menu for tomorrow. She'll get a few bags of those. Other than that, not much going on tonight. We've loved our nurse today. I think I am going to chain her to the room for awhile :0)

The new cream arrived this morning and we've been applying it. (cream #6) Hard to say what's what but she does look a bit better today. Her hands and feet are still really warm to the touch, but they are less red and bumpily :o) There is still a rash there for sure, but it appears less angry.

I hope everyone has a great weekend! Please send little grafting vibes!

January 6, 2011 - There's A Cream For That - Day 13

Hi everyone!

Well, we aren't having much fun at the hospital today. We are at day 13 with no little cells in sight. She had VERY low platelets this morning so she was getting a nice bag of these when I arrived. There are several things going on today. First Alex is getting some strange rashes in various places. They are just patches of red, bumpy skin. Her hands and feet have some patches, her head in a few areas... on her cheeks. One of the problems with these rashes is they are really warm and they burn. So getting her into a bath is just torture. Even though she really wants to take a bath. Today she just sat there and bawled. The nurse said that she has seen some kids where their skin actually blisters and peels. I hope it doesn't get this bad. They say the rashes CAN be GVHD (graft vs host) but they aren't convinced it is yet. First of all, since she hasn't engrafted yet, they aren't sure that rejection is taking place. BUT, skin rashes are a classic sign of GVHD. All we can do is treat the symptoms. Which brings us to this vast supply of creams... She has 5 different creams right now and they are prescribing her another one in the morning. FUN!

One of the dangers of having extremely low platelets is random bleeding. This happened to Alex today. She got a real gusher of a bloody nose. It's really scary when your platelets are so low so it's always a big concern. SO... as we are sitting there with towel after towel on her nose, the nurse was trying to get a Dr. on the phone to see what she wanted to do for it. Alex looks up at me... and in her nasally tone says "There is probably some type of cream for this." It's just amazing that there are still things that can make us laugh. The nurse came in with some spray that helps restrict the vessels in the nose. We got the blood slowed enough to administer the nasal flush and it seemed to work pretty well. It continued to ooze for awhile, but nothing like it was.

So today... there is this SMALL indication that something may be brewing in the cell department. She has a WBC (white blood cell count) of .2L (these are not to be confused with the white cells that we normally talk about up here... the ANC) This is really nothing and not even enough to do a differential on. She has been at .1L for the last two weeks... which is really nothing. I asked the Dr. today what this meant because I had seen a .2L show up on Alex's labs before and it seems these small numbers go up and down. Well... she said that EVERYONE's labs on Sunday showed a WBC of .2L so she is thinking something was wrong with Sunday's labs (evidently). BUT... she did say if this number was 'real' that it could be a trend. If it climbs even a smidgeon more, they can do a differential and be able to tell if other labs are climbing... like monocytes. This is one determining factor of counts on the rise.

Well, that's about it for today. It hasn't been a good day for Alex. She has been really miserable. It's so hard to watch all this and decide what to do? There is nothing I can do to fix this, or even make it better. All we can do is wait...

Thanks for staying with us everyone. It means the world to me to see the support I have. Please send some good vibes... blood vibes... rash riddance vibes...

January 3rd, 2011 - Day 10

Hi everyone! I hope everyone enjoyed their holidays.

I can't believe it's been 10 days since transplant. WOW! Some days it feels like a month and some days like yesterday. We are still patiently waiting for engraftment. It could basically come any day now.

Day 8 brought a few things... first Alex had platelets in the morning and then 2 units of blood. The doctors are concerned about how Alex's surgical site looks (assholes!) and now are requiring a once a day dressing change with antibiotic ointment. This is NOT a fun process for Alex. Poor kid. Since her surgical site is looking red and angry the doctors put her on some more antibiotics just in case. Well... they started up a new antibiotic Vancomycin and Alex had another allergic reaction. She turned bright red and started getting more chills. They quickly got it under control with demerol and hydrocortisone. I don't think the premeds were done early enough. It's really unfortunate because Vancomycin is a great antibiotic so hopefully they'll be able to use it in the future.

Day 9 was pretty uneventful. Thank GOD! The dressing change is always the worst part of the day. Most of the time Alex just cries through it, which is awful to watch. I can't wait until this damn thing heals up. Alex was able to have a few visitors yesterday. My best friend Cindy spent the day with me up here yesterday. We always have fun together and I think Alex enjoyed the day with us. Also our great friends, Bob and Pam, came up to see Alex. It was a very nice visit. I think Alex really enjoyed the time with them. It's always good to see her laughing.

That brings us to day 10... not much going on yet today. Alex's glucose levels are high so they are watching that. They are going to spread out the IV nutrition over 15 hours instead of 12 to hopefully make that a bit better. It's a common problem with IV nutrition. Also... Alex is retaining a lot of water so they've had her on Lasix to help remove some of the water. This was working great a few days ago, but now it's not doing a whole lot. Alex's counts are doing nothing. Her platelets are down again today so I wouldn't be surprised if they will give those today. Her red blood count is holding pretty steady for the last two days so that is good. Everything else on the lab list is a big fat ZERO! rude rude. Well, that's about it to report today. Life on the inside is pretty boring. But boring is good up here :o)

Thanks for tuning in... I will update more in a few days.

This is a funny joke with us... I tease Dan with some of his wardrobe choices

This is what Alex has to brush her teeth with right now. A toothbrush is too hard on her poor mouth.

This is Alex's IV pole... 8 different things running into Alex right now.