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.