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 :)