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 :)