March 3, 2011 - It's Normal - Day 69

Hi everyone!

Sorry that I did not update last week. The week just blurred by in the most boring way possible. Sometimes I don't know how we can be so bored and be so busy at the same time.

Things here have been about the same and there really isn't much to report on. We have had 2 clinic visits since my last post and both visits have been about the same. Alex's blood counts continue to rise. Platelets are really stable, and just a few shy of normal. Her red and white count were awesome today. ANC was 3.800... THIS is amazing and NORMAL!!! YAY! At least we aren't hanging out worried about blood every day that we are home. That's great news. We have spent many a week wondering if we'd have to go in for blood transfusions and that is no fun!

Alex hasn't felt well at all this week. There isn't really anything to pinpoint, but she just hasn't been well. The doctors didn't seem at all concerned about this today. I know they would like to see her have a bit more energy but it's not there yet. I am hoping with better weather coming we can get out and walk a bit. It's hard to do anything when you can't go anywhere, ya know?

So, other than that, Alex is still on IV fluids at night. Her meds are still horrific, but a few have dropped off the daily menu which is good. I guess if there are no signs of graft vs host (GVHD) at day 100, they'll start reducing all the immune suppressants. This is what we want... although kind of scary at the same time.

Alex is still not eating much. It's a HUGE task just to get 500 calories in her a day. She is eating better than when she first came home from the hospital, but I just can't believe how slow the process is. I was expecting slow... but the day to day progress is not noticeable to the naked eye :0) Poor Alex is getting so frustrated with her condition that doesn't seem to change all that much. She has been pretty emotional this week. I am sure she is just so sick of being sick. I can't even begin to imagine how she feels everyday. I keep telling her that she needs a cup of coffee. She hasn't had a cup of coffee since December and I am pretty sure this is her magic pill. I think her whole body will perk up once she has a triple shot of my home brew :0)

Well, thanks for tuning in everyone. I will be better next week. Blogger isn't letting me load photos tonight for some reason so I will update with some new photos next week.

Have a great week everyone... and please send good vibes. We need to turn a corner around here. Hopefully all your positive vibes will boost Alex into feeling a bit better :)

February 16, 2011 - Cell U What? Day 54

Hi everyone!

Sorry :0) I am late again. With clinic on Monday and a blood drive yesterday, I'm just getting to the update tonight.

Our visit at clinic on Monday was very good. We learned a lot in a short time. After Alex got her blood drawn it was all about waiting for the results to get back before the doctors came in. There's nothing really they can talk to us about until they get results from the blood so we just wait... The psych guy, Paul stopped in for a visit and that is always fun. Well, the doctors came in and said they had great news about the bone marrow biopsy that they did the week before. The told us that Alex's bone marrow cellularity was 40%. We were like, what? SO... apparently we are all born with 100% cellularity in our bone marrow and as we age we lose these cells. They killed all cells in Alex's bone marrow during the preparative regimen before the transplant. When they do a bone marrow biopsy they take out a certain amount of bone marrow and examine it for cellularity and also look at each cell to check for leukemia markers on those cells. The portion of bone marrow they took last week came back with a 40% cellularity growth (which is super fantastic!) and also there were NO leukemia markers on any of those cells. WOOOhooo! The doctors were even surprised with the amount of cellularity there was at this early date. They said it was fantastic news. And, obviously donor cells are working hard. YAY!

Alex has been throwing up quite often so that was the biggest concern that I had for the doctors this week. We talked about several things and they wanted to try a new drug that aides in the way the stomach released food into the intestines. They think that food is just sitting in the stomach too long and the natural process of releasing food is not quite working yet. So... incredible what they have a drug for. Hopefully this will do the trick and get things working like they should.

Another piece of great news were the blood counts:

WBC (white blood cells) - 3.7

Hct (red blood cells) - 31.3 (nice to see this number climbing)

PLTS (platelets) - 129 (this is almost the low end of normal which is amazing!)

ANC (the good stuff!) - 2.3 (fantastic news and IN the normal range!)

I want to thank everyone that came out to the blood drive! Thank you thank you! It's such an EASY way to give something that can save someone. I should have taken more photos... the one of Natasha and I giving together would have been great. She filled up a bag in seconds and they had to keep checking me to see if I was still bleeding. Thanks to Million Air for letting my mom set this up in the hangar there.

A rare photo of Alex and I :0)

My buddy Mike (looks like Lance doesn't he?)

And this crazy one is acting like it hurts... it doesn't :D

Thanks to Travis for coming out again! You are awesome!

Transfer Complete - February 7th, 2010 - Day 45

Hi everyone!

I'm a little late with the update, but I'm back dating this post so I can keep track for myself. Sorry to all those that have been waiting to hear this week. It's been crazy at home.

SO... we had our clinic appointment today. We were scheduled for the bone marrow biopsy (that we missed last Monday) and also blood labs and physical. And boy does a 8:00am appointment come early to us when we're dealing with all we're dealing with at home. First we had to check in downstairs for the RTU (rapid treatment unit) and the go upstairs to clinic. They checked Alex in and did her vitals... NO FEVER! yay! Just knowing we could proceed was the first good news of the day. The next piece of good news was to follow... As we were waiting on the nurses to come in (which took forever and we were all adding up how many extra minutes we could have slept in) the BMT member came in and was going over all of Alex's labs from the previous week. I asked her if she had the results of the Chimerism test. She smiled and said "I DO have the results, and it's great news!" Alex's test results came back as 100% donor cells. This is fabulous news! At this point it would be heartbreaking if her old bone marrow started working and the donor cells did not. BUT... the donor marrow has made its new home inside Alex. YAY!

After talking with the doctor about some miscommunication over IV fluids at home, they determined that Alex was really low on magnesium and had to return to the clinic after the bone marrow biopsy for a magnesium boost. The day would be longer than anticipated. Lucky for us, we are always prepared to pack a lunch and forward our mail when we go to the hospital with Alex.

The bone marrow biopsy went as normal. Alex has had so many of these that they don't even phase her. She really responds quite well to everything they do down there. After she was awake in recovery, we wheeled her upstairs to get some magnesium. This turned out to be an hour and a half IV. They really like to do it over a longer period of time, but this was their quickest solution. The bone marrow director came in for a minute while we were there and said that with the news of the 100% donor cells, that he was almost certain there would be no blasts (cancer cells) in the bone marrow. Of course we won't know the results of that test until next Monday when we return to clinic. The good news is, is so far we are only going into clinic once a week instead of the twice that happens for most people. With Alex having engrafted in the platelet department, that means less hospital visits for us. YAY! Overall blood counts were looking real good.

Hemoglobin 10.0 (low but coming up)

Hct (red blood cells) 29.7 (low but looking better)

Platelets - 115 (this is just awesome... although still on the low side)

ANC - 1,300

Since we've been home, Alex hasn't been feeling all that well. I'm hoping it's just lingering side effects from all the anesthesia. She seems to be a bit better today than she was yesterday (Feb 8th) but I just wish she would turn another corner and start to feel a little bit better :0( It's a day by day gig here... and that gets hard to deal with at times. But Alex really is doing quite well given what all she's been through in the last (almost) 6 months. WOW! I can't believe it's been almost 6 months since relapse. I think it's about time she started feeling good again! Poor kid has had a really shitty last 3 and a half years. I hope she starts feeling like herself soon.

I want to thank the kind woman Linda (and all that help her help us!) for the huge box of goodies we came home to today! A HUGE box of freezer meals and cleaning supplies! Thank you, thank you! Talk about a totally useful gift! You are a wonderful woman!

Also, I would like to tell everyone about the next blood drive. Something I should have done a few posts back but forgot. The next blood drive is the day after Valentine's. SO... FEBRUARY 15th. This one is in Salt Lake City at Million Air (my old employer and my husband's and mother's current employer). The address is 303 North 2370 West. It's on the General Aviation side of the airport. 1:00pm-6:00pm Please contact me if you can make it. 801-540-0508 We would love to have you there.

February 2nd, 2011 - Happy Groundhog Day! Day 40

Hi everyone!

Just to let everyone know, we are home again. This last visit really didn't amount to anything. The fever really didn't amount to anything and it never even showed its face again after the clinic visit. All the cultures came back negative after 48 hours. The chest x-ray was clear too, so that was all good news.

Alex was released today in record time. I think her and Dan were home by noon. A small miracle for sure. I stayed at home for most of this inpatient stay because I was sick. It's so hard to be home and know that you really shouldn't be up on the cancer floor. Luckily Dan was not working and was able to spend a lot of time up at the hospital. Alex had her grandpa up there too, which was really nice since it's hard for him to visit her here at the house.

Our great friends, Bob and Pam, had invited us over to watch their annual showing of Groundhog Day (the movie.) Surprisingly, Alex accepted the invite and wanted to go. This was the first time Alex had been out of the house or the hospital since the first part of December. It was great to get her out. We all had a really nice night. Thanks for having us Bob and Pam! Alex is really excited about the 'Apocalypse Now' showing :0) When we were getting ready to leave Bob and Pam's house, we were all standing around talking and Pam said that after hearing we were bringing Alex, she had told Bob to get the house all cleaned... So Bob had been frantically cleaning all day before we arrived for the movie... Pam said that it was so nice that we came... giving Bob the day to clean... and asked if we could bring Alex over again next week :D I see a business plan in the works!

We are once again just chill'n at home. Hoping for no fevers until our next visit at clinic on Monday. The bone marrow biopsy has been moved for Monday as well. I hope we don't have anything interfering with it this time. They did do the Chimerism test when we went in this last Monday, so I am hoping there are some results for us next week. I bought a new puzzle for Alex and I to work on :o) I will post photos of it soon. It's only half as big as last time, so shouldn't be too bad. It's something Alex and I can do together and it gets her up!

Thanks for being here everyone! I will update more on Monday with all the new info.

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