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.


  1. this makes me tear up reading. I really thought today would be the perfect clinic day. I'm so sorry Abby, you are my hero. You roll with the punches when anyone else, would have just stopped. 4 days left, just 4 days. Love you guys!

  2. Ohhh im so sorry. When ever we had a break thsts when crap hit the fan and we had to start over again. It is so taxing! Mariska is 4 months out for the 2nd time ever. Im a mess just waiting to see if our normal turns into something yucky. Transplant kiddos only get a few breaks. But she will get to a good place! clinic visits will be more spaced apart. Hang in there. Xoxo melynda and Mariska

  3. This makes my heart so sad....Poor Abby. She is one amazing kid to be standing there smiling and getting a shot in her belly! My little brother is diabetic and we used to have to give him shots twice a day or more. Its not fun. Hugs to both of you!

  4. Love you all! Abby you look beautiful hang in there everyone!