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 again...so 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.

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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!!

XOXO, Kin

 

Hospital pics & Birthday Pics:

 



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 button...it'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.

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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 you...you'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.

 

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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 forever...it 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 now...so 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!

 

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"I have a feeling that once you live through something like this, you become a little bit invincible." -If I Stay

 

XOXO, Kin

 

 





 

 

 

PINKIFIED

 I was admitted today into PCH today and I was pleasantly surprised when I walked in and saw my whole room decorated. IT'S FREAKING ADORABLE!! Feels like home, well as homey as a hospital room can get. lol. Thank you so so much Aunt Kara, Meg, Granny, and Buzzuto's!! I absolutely love it!

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SURPRISE!!!!
I HAVE ALL PINK HAIR!!! & I absolutely Loveee it! I had to just go all out before my hair started to come out!
Thanks to Candice Shumway!

PINK Palooza

Today was started with another trip to the fertility clinic, and I get the egg removal procedure this Friday! One word: HALLE-FREAKIN-LUJAH!!!! I've had to give myself 2-3 shots every night for the past 3 weeks and they've been pretty painful, but bearable. I'm just ready for all this fertility stuff to be over. We headed strait from the fertility clinic to PCH clinic for a blood transfusion. So that's basically been my day. 

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So, I decided I needed to do something a little crazy before I have to shave my head for transplant! I don't usually do anything different to my hair, but I wanted to try something out. Why not? I didn't have anything to lose…so the craziest I could get myself to do was dye the ends of my hair PINK! To say I am in love with it would be an understatement….But I'm IN LOVE with it! 

XOXO, 

Kin