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