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:


Thursday, November 20, 2014

Ups, Downs, & Turn arounds

This past week had been a complete roller coaster. I've been home a little over a week and it's been so great. A little bit of normalcy. With the occasional 8 hr long clinic visits three times a week, but nevertheless "normal".

It's so funny how things can change in an instant. We didn't have clinic yesterday, and I considered it one of my best days home yet. I cleaned my room (yeah I know...shocking), I put together a new outfit and took pics with my sister, Chatted with loved ones, then ended the night watching Jace's football game from the car. It was just an over all good day, while feeling decent. We got home and I started to feel shooting pains all down my right arm and I just felt weird. I was just thinking "oh it's just from my fall the other day, which it probably was". Then I got an awful headache along with extreme nausea and stomach pain. Luckily no fevers. It was just a miserable night...transferring into a miserable day at clinic today. I was scheduled for what I like to call the "bubble girl" test, where they put you in a bubble contraption and it has a medication  that helps keep away pneumonia's, so it's super important. But I was already sick, so they cancelled it today. They had to access my port, and then drew blood cultures from all three of my lines to see if there's any bacteria, viruses or infections. They ran antibiotics through the lines to see if it would help also. They're also running tests on my pancreas again to see if that's the cause of my stomach issues, since it has been in the past.

Where does this leave us? Nooo idea. I'm hoping and praying my heart out they won't admit me, but I also need to be safe. I've been emotional about it, I just got out...I can't go back! One of my biggest goals was to be home on Thanksgiving with my family eating good food watching the Macy's Thanksgiving day parade, and I still know that will happen. I just ask for extra prayers, that all the tests come back clear and it's just my body getting used to things.
OKAY...happy note!! My transplant bff, Stephen may get to ditch that bmt unit tomorrow!! So happy for him! We'll be praying for you Dwyer's, We Love you guys!!

Okay...totally getting side tracked. If you know me you know I have a slight obsession with shopping, clothes, and putting clothes together. And let me tell you...sitting in a hospital bed with nothing to do makes it 10x worse; ya NOT GOOD. Especially with pinterest and online shopping. Anyway, I've been sick of living in pj's for months so I put a fun, comfy, outfit together...and I'm slightly obsessed.
Thank you all for the continued love, support, and prayers. There would be no way my family and I could do this without you! (Special shout out to the Cole family for the light up Kin Can Kick It on top of your hugee tree! It's so fun driving by every day! you guys rock!



Sunday, November 16, 2014

Home SWEET home

    14 weeks in the hospital is a long time, too long...especially when you feel crappy all the time. Oddly you get so comfortable with your simple surroundings; the sweet nurses who become your best friends, the sweet bone marrow transplant friends who make things a little easier, the nurses telling you what to do and when. Then you get home and all of the responsibility is all on you. The nurse isn't gonna come rushing in at a click of a's nurse mom and dad. Luckily they're basically like nurses. We'd be in trouble, lol. They have done such an incredible job. Remembering everything. It so exhausting to be honest, and we've been to clinic three times already this week after we got out Tuesday. But we got to go HOME at the end of the day, our real, newly renovated, beautiful home. It's the sweetest feeling.

Last Monday in the hospital, after I had gotten out of the ICU with seizures. I hadn't walked in weeks so I was as weak as you can imagine, my doctor had come in and she told me two things. "Mckindree you're gonna get out of here next Tuesday, I believe you can do it" I had heard this "you're getting out" a million times. Yeah whatever. I shed a few tears and looked back up at her.  Then she looked straight into my eyes and said "I'm so proud of've come so far. If you believe you can get out, you can and will". I lost it. It had felt like years since I had heard that the way I did. So Tuesday, November 11, was my serious goal. I was determined.
Well if you were wondering...those words stuck with me, and I got out of that place. I got to go to my own Home to be with my own family. Something sweeter than even shopping! ;)
Tuesday morning I woke up early. The anticipation was killing me. Things were busy with trying to get everything prepared. So I grabbed my pole and went around the BMT floor handing out things and chatting with friends. Then I went back to the room, got cleaned up and had my sister bring me a cute outfit of course. After all it was my escape day, being in pjs doesn't cut it. :) It had finally come...the time to go. The Jobe family walked in along with my granny, aunt kara, and molly. People who have been there through some of my worst times. I walked out of my door, mask and all and I open the double doors and there I see all my doctors and best friends of nurses holding finish line tape. So many emotions came upon me. It's bitter sweet!
Once I got outside, I see a pink Mary Kay Cadillac with my name on it. (jace told me a mean joke and said it was mine...ya it wasn't. Thanks jace, its a good thing I love you) But I wanna thank the sweetest driver and mary kay director Collette for that surprise.
After long hugs, tears, and goodbyes we headed out. After getting off the freeway, I come around the corner and see hundreds and hundreds of "Kin Can Kick It" shirts lining the streets with signs. And it kept going and going all the way to my house, with my friends, family, church family...everyone that I love. Emotion flooded me. There aren't even words to describe it.
I couldn't hug everyone, which I wish I could...but I needed to get inside. Heck I hadn't even seen my new room. Let me tell you it's AMAZING! Thank you a million aunt Sarah. please teach me your ways! And to everyone who helped with the house...THANK YOU! It's incredible.
Since we've gotten home it hasn't been easy what so ever. Still trying to figure out timing for meds, learning the "new normals". For a newly recovering bmt patient, it's been especially hard. There's days I feel like I've been hit by a bus. There's 9 am meds, 11 am tacro, all this diabetes stuff (steroid induced...along with the chubby cheeks and belly, still trying to accept that), Mag drip that runs 3 hours, having no strength to get up and push a pole around, carrying a 20 lb pound bag of fluids on your back just when you get up, feeling like complete crap, then the night time meds. It's just exhausting...and theres been times where I just have to sit and cry. My mom and dad work tirelessly also to help me and get things prepared.
Friday was just an awful and long day...and go figure my sweet moms birthday. We had to go to clinic, and by clinic I mean the phoenix clinic (every time). I had an infusion of Cidofovir, for the BK that is still causing me problems. Then we realized my Mag was low, so they did a mag drip...and it made me feel really crummy, then my platelets were super low, so they did that. Then pharmacy was taking was just an extremely long day on top of already feeling crappy. We were there probably a good 8 hours. My mom has the patience of an angel, even on her birthday. We both broke down on our way home, which is totally understandable in my opinion. It's hard. I knew it was gonna be hard, but not this hard. There's so many restrictions to keep me healthy, which is reasonable, but as a teenager hard for me to accept right now, especially after being trapped for 14 weeks in pain.
Wednesday was a good day, I was surprised by one of my favorite photographers who I've admired for a long time, Jaci Smith and her cousin who does make-up. I was totally shocked when they came into my room. At the same time, I was a little worried. I knew pictures were in the future, and i'm still getting used to my body changes. But then I realized...this is a part of me, maybe not what I want, but it's how it is right now. Weather I like it or not. It's my new "normal" and one day i'm gonna want to remember this and remember that I got through it. It was such a fun time getting all dolled up and I will be forever thankful for them coming to do that! (i'll post pics when I get them)
On Saturday I just needed to get out. I was a wreck,  I wont deny it. But I can't go to a mall right we made do. We went on a special trip to the temple at night, to stay away from crowds (mask and all) and we walked around. I missed that place. Then we made our way to granny's. One of my fav places. It was a nice evening. 

 I'm so grateful to be home. To be back to somewhat of normal. It's gonna take some time, so if you don't get texts or responses back please don't be upset. I still receive everything and appreciate it. On to the next phase. Hopeful for good things to come!!! Love you all. 
HAPPY LATE BIRTHDAY mom! I'm so lucky to have you through life's ups and downs. You are incredible!
It's the best being besties with you!
"I have a feeling that once you live through something like this, you become a little bit invincible." -If I Stay