Monday, December 8, 2014

Feeling Glittery

This week has been quite Glittery!

To start off, I celebrated my post transplant birthday on Monday. So fun! This week has been great, a few bumps on days and long clinic visits. My stomach has flare ups, because of the GVHD, and so does my skin...and it becomes quite painful. I had mentioned earlier about starting a new procedure called, ECP. It's really hard to explain (so i'll leave that up to my mom, lol). But basically the whole purpose is to try and get me slowly off the dreaded sterroids and recovering. I'm currently here doing my first round. The crappy side, is that a new high volume port will have to be placed in my chest; they're hoping to get that scheduled within the week, because the broviac isn't necessarily compatible with the high volumes going into me.

Highlights from this GLITTERY week:
>>> Craft night with my aunt Kara...It's a secret so i'm keepin this one on the down low

>>> Trying lobster for the first time AMAZING!! I used to hate seafood, but those donar cells may be changing things
>>> Being able to take pics of my cute best friend for Winter Formal. She looked stunning.

>>> Starting off ECP with my cute momma

>>> As a lot of you know, I'm obsessed with fashion, designing, crafting, SHOPPING, photography...dah dah dah dah. I feel like it just makes you want to get up and have a fun day. I love bloggers, and this week one of my faves  @Whippycakes, sent me the cutest package full of amazing pieces of clothing, jewelry, everything you could imagine. @Flybirdaparell has also been so kind with their amazing, comfy, inspiring t-shirts. Thank you ladies for putting a little sparkle in my week.
>>> Photoshoots. I've done a fun few photoshoots with my madi & my cute sis hattie just for the fun of it. It's been hard for me to come out of my shell with the face changes and all that...but it's been sort of relaxing to get dressed up and have a little fun.




Monday, December 1, 2014

A very happy Bone Marrow Transplant Birthday to me! DAY +100!!

 It's your birthday, it's your birthday, gonna party like it's your fake birthday!!
Today marks 100 days since I received my life saving bone marrow cells. Amazing to think, and amazing to think how far I've come. It hasn't been easy, in any way shape or form. I've been to the worst of the worst, and seen the best of the best. But I'm alive, currently at home with my family, and feeling pretty good. It's been a pretty darn good "Birthday"!

As many of you know, I was admitted back into PCH the 25th of November. We had originally gone in for a super high heart rate that had gone on since that past Thursday at clinic. They wanted to watch me, so they didn't admit me earlier. Then I started throwing up, and my stomach was acting up low and behold we spent countless hours in the ER then made our way back to the BMT unit. It was hard for me. My biggest goal since getting discharged the first time was to just make it through the holidays, to be with my family on Thanksgiving. That didn't happen, and it actually ended up being quite honestly the day from hell, I'm sorry to say. My stomach raged, and luckily my sweet daddy was there to comfort me, while my siblings enjoyed thanksgiving with my mom...which they needed that sweet time. I've kind of come up with it being "a blessing in disguise", because if there was one day I couldn't eat; it would have been that day. It was awful. I was promised a make up Thanksgiving anyway...we have so so much to be grateful for and I'm starting to realize the little things more and more each day. On the bright side, I got to hang with my cute bmt friends, Steph who is getting her cells this upcoming Thursday (please pray for her), sweet Ashlyn, and Lily. We might of had a few dance parties, chair races, and midnight talks, those little souls can sooth your own, I'm telling you!
The next day they scheduled an emergency colonoscopy/ endoscope to see what was going on, afraid the GVHD had come back with vengeance in my gut. Sadly it has, and I'm back on high doses of steroids. I'm disappointed, but whatever will help at this point. We are starting a new treatment called ECP, which is hard to explain, but in hopes it can help reduce the amount of steroids I'm on and combat the graft vs. host. There's so many tiny details to transplant, but we're starting to slowly get the hang of it.

Onto the good stuff!!! One I'm out of PCH as of last night and two: HAPPY BONE MARROW BIRTHDAY TO ME, HAPPY BONE MARROW BIRTHDAY TO ME! DAY +100!! Which in transplant is a hugeee milestone, and I'm so proud to say I made it! I've fought my hardest everyday, and I made it. There's still so much to come, but it's fitting today is December 1st, my absolute favorite month...filled with my favorite holidays. Christmas & my 17th. I have a really good feeling it's gonna be a really good month. I have hope, I have glitter in my eyes...quite literally. I put some on today, hehe!
Today has felt like a really good overall day. I woke up with pretend "100" candles in my oatmeal (along with nasty pills) lol, made a "glittery 100" day sign with the help of my sis, got a shower, had aunts and my granny come to wish me a happy day, got a special outfit from my mom and Lindsey Stirling (literally glittery pants which are to die for), took "birthday" pics, The cutest company "flybird Apparel" got me a shirt which is the cutest, and I was treated to a massage thanks to a good friend, Pat. Oh and even snuck a nap in. T'was a good day! I'll probably be exhausted tomorrow, but hey I'll take it. So much to be Thankful for.
August 23, 2014 will be a day I will never forget. I thank my donor for giving me a second shot at life, my family for being my rock, and my friends and family for the constant love and prayers. 100 days down...forever to go!!

Hospital pics & Birthday Pics: