Happy 21st birthday to Alex and a very happy 100 days!!!

Hi everyone! I know it's been a quiet blog lately. This is a good thing. We've actually been busy with several different doctor appointments over the last week.

Just to catch up a bit... Alex has REALLY turned a corner and is doing SO good. Her blood counts on the last few visits have been great. They are fluctuating a bit but they say it's normal. Her liver enzymes have returned to normal and I think that makes everyone feel better. She did lose a bit more weight last week so I have put my nagging into over-drive this week. They are a bit worried she has a little GVHD going on with the weight loss, but I am determined to prove them wrong as I don't think she is eating enough to keep any weight on. SO... she is trying her best, along with me to get some weight on her by Thursday's appointment.

Last week Alex had the Pulmonary Function Lab appointment... this is the testing where you blow into a tube and they measure your lung capacity. She failed several of the tests, but in the end she was able to pass the testing. This wore her out completely. After the PFT lab we went over to the Fertility/Infertility clinic to see a special gynecologist. They really like to set BMT patients up with Ob/Gyn doctors so there is someone that can take a look at everything from a BMT stand point and they can be aware of her history for the future. The doctor told Alex that with all the treatment she has had that she would be VERY surprised if she were to find any eggs left. If Alex is completely sterile, the doctor says that she will start menopause very soon. They are going to do some blood testing in June to see what type of hormone levels she has. Other than that, after the visit we were informed that Alex's reproductive parts have extremely atrophied. We were told this would happen. So, I guess we wait to see the results of all the hormone blood testing in June to see what will happen. She was going to immediately put Alex on a hormone estrogen therapy, but after learning of Alex's stroke back in 2007, she is going to wait to see the blood tests. The next doctor was the Ophthalmologist. This appointment went perfectly. The doctor said that everything looked perfect. This was super good news. There has been no damage to any parts of the eye.

Also, last week, Alex had her chest port taken out. It was a pretty quick procedure combined with a bone marrow biopsy. She woke up in a LOT of pain. I really hate to see her cry in pain because I know her threshold for pain is huge... so to see her in that kind of pain is heartbreaking. It took quite awhile to get her pain under control so we could go home. She was a new kid by dinner time though. VERY nice to see something like this not knock her down for days at a time. YAY! She has been taking normal showers again and is loving not having the fluids hooked up and dealing with the giant cord hanging out of her chest. YAY! We won't have the bone marrow results until our appointment this Thursday. I will update on that. Hopefully it's clear and everything looks fantastic! Everyone PLEASE send good bone marrow mojo!

Other than doctor appointments and sitting around recovering, we celebrated Alex's 100 days and 21st birthday on the same day. Such a super cool coincidence. We took Alex to a favorite bar/restaurant of ours. We met with some great friends and I think Alex had a great night. She was cleared to have a couple drinks... no more... and that is what she did. It was such a fun night. It was so nice to get her out of the house and seeing people and enjoying life a little bit. I have to thank my incredible husband for all he does... Thanks so much for doing so much to make this party special for Alex!!!

Other than that, things are about the same around here. Alex looks REALLY REALLY good. She is starting to feel more and more like herself. And as a caretaker it's so great to see the changes finally start to happen. It has been such a long 100 days.

Thanks so much for being here with us... it means so much! I will update again soon. Here are a few photos from the 100 day/birthday celebration.

Alex and Dan at the bar on Alex's birthday

Alex and I

Alex opening gifts... thanks to everyone!

Hanging out with friends at the bar

Alex after her first eye dilation... It was pretty funny.

March 24, 2011 - Out With the Port - Day 90

Hi everyone!

Just an update to let everyone know we had clinic today. Everything looked SO good. Blood counts were great, and liver labs were much better... glucose was normal. OOoh, and she even gained 2.2 lbs. YAY! Everything looked SO good. Soooo good, in fact, that they are taking out her port next week during her Bone Marrow biopsy procedure. I have mixed feelings on this. Of course it is excellent news. I have just dealt with so many disappointing things that I hope they are not taking it out too soon. I will just put on my positive face and hope this is the end of the damn lines hanging out of her. I know this port has been nothing but trouble for her. Hell, it hasn't even healed all the way yet. I know she will love to take a normal shower again. We have to tape her all up every day, and it's not a relaxing shower at all. SO... out with the port!

I would say that the last week Alex has really turned the corner I was so hoping to see. Just this week is the first time since December that I have not had to bathe my adult daughter. She finally felt able to take a shower on her own. This is an incredible step. She's been up and making her own coffee... even brought up a book this week to read. These are all such great things to see. Of course with feeling better is bringing EXTREME boredom! We've gotten out a few times and walked around the block. You can really see her strength getting better and she is up and engaged all day. It's been VERY nice.

The end of our clinic today brought a HUGE list of appointments over the next 2 weeks that will be her 100 day work-up. There is a gynecology appointment, another pulmonary function test, opthalmology appointment, a family conference, and more labs. All this along with another Bone Marrow biopsy and the port surgery. The next two weeks should be pretty busy.

That's about all I have for today. It was a super great appointment and only lasted an hour. It was very very good!

Thank you to everyone sending good vibes!!! Please don't stop. They are working :O) I will update more after her pulmonary testing is done on Tuesday. WE ARE GETTING THERE!!! Wooohoooo!

10 more days until day 100.... and 10 more days until Alex's 21st birthday. Woohooo!

March 15, 2011 - Liver Watch - Day 81

Hey everyone!

Sorry that I did not post last week. It's been busy around here and time has gotten away from me again.

Just an update from last week:

We checked in last week and Alex had reduced O2 levels and increased liver enzymes so they were worried that Alex had RSV. NOT a good thing for a patient like Alex. So... they took a bunch of tests to see what was what. Alex was also experiencing some shortness of breath so they sent her down for a chest x-ray to make sure everything was good. The x-ray showed that everything was where it should be. I really think most of the shortness of breath came from Alex panicking over the RSV scare. She really didn't feel comfortable with going home so they kept her overnight and waited on all the blood tests. I picked her up on Friday with a clean bill of blood health... she didn't even have a cold show up. One of the findings from last Thursday is that her anti-rejection level was WAY LOW! This could have been the reason why liver enzymes were off and her O2. So... they bumped up her dose 3 times the amount she was on and had us came back to clinic two days before our normal visit (today).

Our 5 days at home has been pretty dang good. Alex is spending a LOT more time awake. She has started having a little coffee in the mornings (very little) and eating a bit more (a very little bit more). I have also gotten her out a few times for a walk. It's been a pretty decent 5 days.

Well... that brings us to today. Today's visit was a little hard to explain and I don't know how I feel about it... as I am not sure they know enough yet. They are a bit concerned with all of Alex's weight loss. They think she could be showing signs of GVHD in her intestines. BUT... I don't think she is eating enough to maintain any weight. SOOO... the goal this week is to keep Alex eating all day long. Little bits... all day. Her stomach needs to get working properly and she needs to put on SOME weight this week. Even if it's hardly recordable. It needs to happen. If she loses any more... or the nausea isn't getting better... they think they will have to do an upper GI and take a scraping to find out if there is some GVHD.

Alex's blood counts are terrific... they are:

Hct - 33.0 (red blood)

PLTS - 154 (woohooo... hit a low normal range!)

ANC - 5.4 (awesome!)

Another good thing we are trying this week is a 2 hour fluid IV each night, instead of the 12 hours that we have been doing. Of course this means Alex has to DRINK! SO... not entirely sure this will fly but we'll see.

When we got home from clinic Alex went for a walk with us around the whole block. It's great to have her out! The doctor encouraged her to get out and about any time she could... get things moving the way they should. I'm hoping we can get her out a lot more in the next week.

That's about all that is happening here. We are finally into the teens heading into our 100 day mark. YAY!

Please send good eating vibes!

Thanks for tuning in everyone. I will try to be better at updating.

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.