Thursday, January 24, 2013

Sometimes when things seem like they're perfect, they're really not :(

     We just got back from Salt Lake, and I agree with everyone that has been posting about how cold it is there.  Yes, it is cold, very cold.  We also got to be a part of the ice storm today, luckily, we were already at clinic so we missed all the fun on the roads!  When we walked, or more like skated, out to our car after clinic, it was covered in a thick layer of ice.  I've never seen anything like it before!  Thankfully clinic lasted long enough that we didn't have to be a part of the mess on the roads.  The drive home wasn't too bad, lots and lots of rain.....but we can handle rain!!

     Now to talk about clinic.  This was the first clinic, in a very long time, that we were certain would be perfect.  Abby has been feeling so good lately.  She's been going to the gym and running and going to school all day.  She also hasn't had any swelling in her feet and ankles for almost a week now.  We have had almost one full week of "normal" around here, and it felt good, really, really good.  We felt so confident that they would say that everything looked great and to come back in 6 weeks.  But, as we're learning so quickly, things aren't always as they seem in this transplant world, it can be very deceiving. Abby's labs came back showing that her white blood count is extremely low, too low to just wait and watch and see what happens.  Low enough that it has to be treated, and that's the crappy part.  She's extremely neutropenic.  For now, Abby is back on house arrest.  She's not allowed to go anywhere for at least 5 days, possibly more.  She just doesn't have anything to help her fight a virus or anything else that she could so easily catch right now.  Not only is she on house arrest, but she also has to start Neupogen injections again.  We went through this last April when Abby had CMV.  The Neupogen stimulates her bone marrow to make white blood cells, and it makes her ache all the way down in her bones.  Abby said there has only been one thing more painful than the Neupogen shots, and that was getting her chest tubes taken out after her transplant.  It was bad enough that she asked the transplant team today if they would admit her for the next 5 days so they could give her the medication through an IV, because that's less painful.  With all the sick kids and germs up there right now, I knew that wasn't a option.  I know that the transplant team felt so bad that they had to give her the news because when Abby started crying, they looked like they were going to as well.  It broke my heart to see her tears.  I know it wasn't just because of the injections either, she was just discouraged too.  It's hard to think that things are going so well and then to get crappy news thrown at you.  Not only does Abby have Neutropenia, she's also slightly anemic as well.  This is something we're just going to have to watch for now and not treat.

      So, the big question is, what's causing her to have a low white blood count?  They decided they wanted to run some more labs to try to determine the cause.  We got to visit the "Suction Shack" for the first time ever today, and we thought we knew that entire hospital!  Abby didn't have to get suctioned, but they did stick a thing way up her nose.  It was pretty gross.  The results already came back, and they were negative.  It tested her for all of the most common viruses.  It sounded to me like Dr. Molina was thinking that it could possibly be CMV again.....ugh.  This makes sense because this is exactly what happened to her blood count when she had CMV last time.  But, for now, we're just going to give the injections for the next 5 days.  Then Tuesday, she'll get some more labs.  At that time will test for CMV and EBV as well as see how much success were having with the Neupogen.  We also have to watch very closely for any fever or other sign of infection.  We have to call immediately if we see anything, that would probably be a sure ticket to being admitted.  Even if things start looking better, we will still have to go back for another clinic day in 2 weeks.  I swear they promised we were going to start spacing our clinic days apart, I think we're supposed to be up to 3 months in between!  Unfortunately, I don't think we've ever gone more than 6 weeks.  Oh well, why would we ever want to just stay home and relax a little bit and have things be easy??  That would be boring, right??

Yuck, 5 days of Neupogen injections.  Not fun at all!

Thankfully my dad will give her the shots.  I just can't do it.  Day 1=complete, only 4 more days to go.

Wednesday, January 9, 2013

Justin Bieber Concert by Britt and Abby

Hey everyone! This is Britt and Abby. We just wanted to do a blog post about the awesome concert we got to attend. Yes, this amazing concert was by Justin Bieber. It was probably the greatest thing that Abby and I have ever witnessed. So, here are the memories that we will never forget.

On the drive up to Salt Lake we were so excited! By the time we arrived I think we listened to his album 5 or 6 times. We got to the Energy Solutions Arena and waited in line to go inside. It was freezing! But we didn't care because we were so stoked to go see the Biebs (Justin Bieber.) We finally got in the doors, and we started looking for our seats. We walked around the entire place and then realized our seats were on the second floor. So, once we figured that out, we decided that we definitely needed some souvenirs. The lines for these souvenirs were extremely long. Abby and I couldn't believe all the people there! But we decided it was well worth the wait. So, we got in line. When we finally got to the front, Abby decided she wanted to get a hat and jacket that both said the word swaggy on it. So, I got the opportunity to order a swaggy hat and a swaggy jacket. It was great. So, we got those swaggy items, and then went and found our seats. Well, what we thought were our seats. We sat there for a while admiring the stage, and watching all the crazy teenage fans. Then some of Abby's friends came and said hi, and they were just as excited as we were! Then Carly Rae Jepson came on stage! She sang a few songs, and then she sang her most popular song, Call me maybe. Abby and I were singing along, and having a great time. Then she ended, and said that Justin Bieber would be on shortly. When she said Justing Bieber, you would not believe the sound level of the screaming fans. It was insane! But, of course, Abby and I were also screaming our guts out.

After Carly Rae Jepson got off stage Abby and I realized we were in the wrong seats! So, we went and found our right seats.. which were closer than the other ones, so we were happy! Then we waited for the Biebs. We got some cotton candy and ate that while we waited. The crowd also did the wave.. for at least 15 minutes. Then the 10 minute countdown started. Every time the minute would change, the stadium would scream. Abby and I were ecstatic. Then the time ran out, and Justin Bieber was on the stage. We were in awe. It was Justin Bieber! We both agreed that he was even more attractive in person. We listened and sang along to his first song. We were in shock that we were actually seeing Justin Bieber in concert! It was amazing! The stage was also very cool! This was our first concert, so everything was new to us. For me, the craziest thing was how loud it was!! There was always some sound going on. Abby kept saying that she wanted to be "The one less lonely girl."  If you don't know what that is, it is when Justin Bieber picks a girl from the audience to go up on stage, and he sings a song to her. Abby did not get picked but I told her it was because Justin wanted to serenade her without all these other people watching. haha. The concert went on, and we sang and danced, and listened. It was some of the best hours of our lives! We were literally smiling the entire time. It was a blessing to me to be able to see my sister so extremely happy. We are so thankful for the Cook family who donated the tickets to us. Thanks for giving us this opportunity.