Happy Birthday Alex!!! ONE YEAR!!!!

Happy Holidays everyone!!! And boy have I been a bad bad blogger. It seems like things just got busy and better and I have let the blog slide.

Well, as all my followers know, today marks the one year anniversary, or birthday I should say, of Alex's bone marrow transplant. What a year it's been.

Since I haven't updated for so long, I'll let you all know that we really didn't turn a good corner until the first part of September. I was just amazed at how long things seemed to take. I was prepared for so much of everything up front, but the longevity of the situation was something I wasn't anticipating quite as much. I will say that once the corner was turned, things really came along quickly.

Just this last week Alex has gone in for some of her vaccinations. For all of you that are new or don't remember, the BMT knocked out all of her childhood vaccinations. Another thing that happened this month is her 3rd and final lumbar puncture/bone marrow biopsy. The results are in and she is still leukemia free! YAY! She is still 100% donor cells so that is super news.

Also since my last update, I had a super fabulous, super successful fundraising event for the Leukemia and Lymphoma Society. It was such a great night and Alex really enjoyed herself. I had some incredible friends and family fly in for the event and it was the best night! I hope I see more of you here next year! What a night! I want to thank everyone that sent wine and donations. I COULD NOT do this event without you! We raised almost $2,000 total for Alex's "Light the Night" team. YAY!

Alex is FINALLY starting school on the 4th of January. It's an incredible milestone for her. We have a new nickname for her "Student Interrupted." She so needs to get back into school and back to the environment where she thrives. I am so happy to see her getting back on track. But it's weird, I will miss her when she goes off to school. A mother should not have to go through these events this many times! Jeeze! I'm excited to see her get back to what she loves. I hope she doesn't get interrupted again. She SO deserves to get on with her life... cancer free... treatment free... doctor free.

Speaking of "doctor free" on her last appointment the bone marrow team said their goodbyes saying that their job is done and have released her back to the oncology department and her family physician. It was a sad, but great thing. This small group of people are amazing and I feel such a connection to them now. I know it's their job, but I feel like I owe them more than I can possible repay. They spend every day troubleshooting these cases that are life and death. I just can't imagine that responsibility. And they all are so human at the same time. Incredible people. I will forever be grateful to them.

I will probably only update the blog when something interesting happens and I have to say that I hope NOTHING interesting happens! LOL

I have to say, there are so so so many people to thank throughout all of this that I hope you all know who you are. I have had the most amazing support system from near and far. There are many people that disappoint you through times like this, but on the other hand, there are far more that have surprised me. I have had some of the most amazing followers from around the world! How incredible is that?! And I want all of those people to know that I COULD NOT have done all this without you. My mom is a super hero for sure! Couldn't have coped without her and all her help! And Dan... well, Dan's is cut from something that few people are cut from. There is a nice story that I hope he doesn't mind me sharing.... He went back east for a visit this year and was chatting with his sister. She says to him "I know mom and dad are gone, but you should know that if they were here, they would be so proud of you." Such a nice thing to say, and something I will always remember. There are many things that are special about Dan, but there is one thing that has stood out through all of this... I've never had to ask if I could count on him.... he's just there for everything. Period. They don't make many like Dan. I'm so lucky that I have one of the few :D I love you babe!

Well, that's about all I have to report on this December 25th!!!! THANK GOD right?! It's been a year. It's been a brutal year. It's been the best and the worst year. I have a very happy, and healthy girl right now. I hope it stays that way until she grows old!

I hope everyone has a very, merry Christmas! And here's to a perfect New Year!

Alex and my great friend Natasha at the wine fundraiser night.

Our Light the Night team.

My friends and family that flew in for the wine fundraiser.

All the donated wine for the fundraiser.

Alex's final lumbar puncture and the "all clear!"

July 26th, 2011 - Summer Fun and 7 Months Out.

Hi everyone!

Sorry it's been so long since my last update.

Can you all believe it's been 7 months! Some days it seems like forever and other days it seems like just yesterday we were living at the hospital.

So... since my last post a few things have happened. Not much though... Early in June Alex had a colonoscopy and an upper GI to try and see if there was some GVHD in her stomach. Everything came back clear on those. There could be SOME that is not really detectable. That isn't necessarily a bad thing since they would like to see a little. Anywho... at least we know with all the weight loss and the not feeling good, that there isn't something going out of control.

The tapering of the anti-rejection drugs has not been a fun process for any of us. Alex has one more taper left to go and then she'll be off the drugs. She is only on one pill a day for the anti-rejection but many other pills twice a day. Hopefully those will get better soon too. Alex's blood counts, however, are excellent! Things are really really good in that department. Those that follow the blog that have had a transplant, will know that it's incredible she has never needed one transfusion since being released from the hospital!

The other thing I wanted to tell you about is the fundraiser that I am having for this year's Leukemia and Lymphoma Society's Light the Night walk. I did this back in 2009 and was hoping to do the same thing this year. I am asking people from all over the world if they would (secretly) send me a bottle or two of their favorite wine. I asked them all to include a photo of themselves to attach to the bottle. And then I had a party... I invited all the local people that I know and strangers too... to a wine tasting party like no other. The entry fee was $25 per person and 100% of that amount was donated to our team's Light the Night entry. It was a GREAT party for a great cause. I would LOVE it if any of you would be willing to send me a bottle or two of wine? It was incredible to see just how far the wine came from at the last party. We had 45 bottles of wine show up from all around the world... all with their photos attached to the bottle and where they live. It was amazing to see just how far my voice could reach. The wine display was incredible. If you would like to send wine for this amazing fundraiser you have to wrap it up good, and do NOT disclose that it is wine. It is not legal to send wine to Utah.... There are several people that have had some issues doing this and have asked if it would be OK if they sent a check to me with their photo and their favorite type of wine that I can go purchase for the party. This is fine for me. I have had several people do this, so it isn't difficult to do this again. Please send to:

Stephanie Burbank

1727 E. Ramona Ave.

Salt Lake City, UT 84108

And if you'd like to donate to our team directly, you can click on my name and donate online here: http://pages.lightthenight.org/dm/saltlake11/PalsofAl#Welcome-to-our-Teams-Homepage

If there is anyone that is local and wants to attend the party, we'd LOVE LOVE for you to come. It's a more the merrier situation since it's $25 per person and the more the better! The party is September 10th at 7:00pm. It's an outdoor, dressy affair. (not formal wear, but nice) Even if you are not local you are invited! I have 4 friends flying in from Kansas, Connecticut, Chicago and Florida JUST for the party! I have the best friends ever! AND... I almost forgot... I have SUPER cool family that is flying in from California! If anyone would like me to email them the official invite, just email me at: sburbank35@aol.com

Well, that is all I have for this update. Everything is pretty much the same around here. Alex is getting out a little bit more but on the couch a little too much still. Hopefully that will change soon! I will try and get some good photos to post soon. Alex is really looking great!

Thanks so much for tuning in!

May 26, 2011 - And Here We Are 5 Months Later!

Hi everyone! So so so sorry that you haven't heard from me in awhile. After about a dozen phone calls over the last few weeks... and promises made... here I am :) I have been a bad bad blogger :O)

I guess no news is good news in a way. Things here have been stable since Alex's birthday and her 100 day celebration. I would say that things are worse rather than better. But only because the doctors have been tapering her off all her medications and that is proving to be a difficult stage in all of this. She is having some minor GvHd creeping up on us. At this stage, if they determine it's GvHd, it is considered chronic. Right now it has not been diagnosed.

Over the last couple weeks we've had a few clinic visits and also a trip to the hospital to get an MRI. Alex has had some back pain so they wanted to make sure it wasn't anything serious. At this point I still don't have the results of that. We went into the clinic today and I cannot believe I forgot to ask about the MRI they did last week. Uggg! Today was all about what is going on with her stomach. She lost 4.5 pounds this last week. I think I put on that many trying to fatten her up. (that's a frustrating side effect from all of this too) :) Well, they are to a point where they want to diagnose the problem. SO... Alex is going to go in for a scope next week. It is an inpatient procedure so she'll spend one night (knock on wood)in the hospital. They will do a biopsy of her gut and somehow can diagnose if it's GvHd. So interesting!

From the beginning they were hoping they would see small signs of GvHd. So this isn't necessarily a bad thing. There is something called Graft vs Leukemia effect that is really helpful in dealing with relapsed leukemia. It's something that has to be diagnosed and then treated with Alex's best friend... the Steroid... but it is something that is treatable. It won't be any fun but we haven't been part of anything fun for so many years we wouldn't know how to play that game anyway. That is where we sit right now.

We've been home bound quite a bit. Not because Alex counts haven't been good but because she just hasn't been feeling that well. It's kind of like this weather we are having... no such thing as two good days in a row. On a good note, Alex's counts have been fantastic! In fact today we had some of the best labs I have seen so far. Her liver functions were the best I have ever seen since all of this. They are in the normal range with NO drugs helping that! YAY!

It's been 5 months since Christmas... since the transplant... and I have to say that there are SOOO many things that were NOT ON THE BROCHURE! I am so thankful that we haven't had any huge setbacks... major rejection problems... horrible side effects... but the day to day process of it all is excruciatingly boring and long. Alex was having a tough day with everything yesterday. Too many days of not feeling good... too many days and weeks of not feeling normal. I told her that we can't look at any of this as a day to day progress... we have to look back over the last 5 months and see how much progress has been made. It's not something you can witness with the naked eye. It was the same when she had her stroke back in 2007. To live day to day can make you crazy... you don't see the progress... they are just long days spent doing whatever you can to pass time. But to look back over a 6 month period Alex learned how to walk again... write again... drive again. The days were spent with occupational therapy and physical therapy but nothing was noticeable day to day. The same can be said with a bone marrow transplant. There is one thing I read when preparing for this journey that sticks in my mind now.... Alex and all of us are going to have to learn to live with a whole new normal. The normal we knew is gone. The new normal is something we will have to adapt to.

I will try to be a better blogger :) When I find out more about this scope situation I will update. Hopefully they figure something out and are able to get my girl feeling better. SHE IS DUE!

Please send good 'feel good vibes'. We need all we can get.

Thanks for tuning in :o)

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.

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