Getting Into The Christmas Spirit

Hello everyone! it's been a minute since I've posted on here, and It's not because I don't have anything to say, but it's because I have so much to say sometimes, that my thoughts get jumbled and overwhelm my mind. I constantly think about my blog and posting, to update people on how I'm doing, and even to keep a journal for myself...but sometimes life just gets in the way, and life has just been getting in the way. I wake up at night sometimes and have these amazing thoughts that come to me about what I should post on my blog, then I wake up and I totally forget what I was going to write. There's chemo brain for ya!
Ever since my "Utah Incident" life has been a little crazy and I would say different. And also very hard. Not only physically, but emotionally. There's the constant fear and the what if's that haunt my mind daily. "What if my dressing lifts up a little, will I get a line infection?""What if I don't wash my hands here or there...will I get an infection there too?" lol! "That guy is coughing, I need to move, I need to wear my mask..." Little things that I stressed over before, but not to this severity. 
I don't know if I expressed this in my last post but, before all of the craziness this summer, but I felt like I was getting to a better place. Physically, emotionally, medically... Maybe that's me comparing that time to now, but it seems that way at least. I look back at pictures on that time; the pictures of New York, where so much magic happened. I was taking an institute class and driving myself, hanging out with friends, felt good about how I looked (I know silly, but true)...and all of that is kind of gone. I haven't been able to take any classes or drive myself anywhere because I've been on seizure medication (so no real independence for a few months), my energy has plummeted and honestly most days I feel like crap. And most days I don't have the energy to hang out with any friends because I just don't feel good or just spend my time at the hospital. I honestly just haven't felt like myself for a long time, and I want to get that back. Another thing that has been hard for me has been the way my body has changed. My body went through so much trauma this summer and my body kind of went crazy on me and I gained some weight. For a teenage girl who is turning 20 this next week, seeing all their friends getting married, going on dates, thriving in college and having the time of their lives...It's been a hard thing. My body is already scarred, permanently bruised, and I'm just getting hair back and I've come to accept those things with time...It's just been one more thing I didn't want to have to worry about. I want to feel pretty, like most girls. 
I share all of this not to make you feel sorry for me, but because it's real and this is a place where I feel like I can share things. Social media has a way of depicting a "perfect life" of most people, and I think a lot of people struggle, with a lot of different things, whatever it may be. I think it takes a strong person to express what they really feel and be real. 

There hasn't been all bad things!! I have started physical therapy and I've been very successful in that. I go twice a week, and while it's so hard for me...It's challenged me and pushed me farther than I knew I could go, and I've been proud of the accomplishments I've made. Like the other day, I went up PCH's 10 flights of stairs...I mean I can't walk now...but I did it lol! 
We also weren't making any progress with my GVHD (Graft Vs. Host Disease) and reducing my steroid's, and my mom and I were getting very frustrated. My GVHD mostly affects my gut and skin right now and so the steroid's have been controlling that for over three years, so was the ECP (Apheresis). But both things come with side effects, especially the steroids, and right now, the steroids are doing more harm than good so they need to get me off. But my body reacts to the tiniest de-crease...and goes crazy. But at the same time it goes crazy with them too, and my stomach just reeks havoc on me and it feels like my insides are getting ripped apart. It's not a fun experience. So, I started a new treatment last week called Tocilizumab. It's an IV drug they're using every three weeks to try to replace my steroids. So we'll see. My neurologist is also planning to wean me off my Kepra, which is my seizure medication, so hopefully that means a little more independence. My headaches have been out of control, so we've been in close communication with him to try and figure something out for those, so far nothing has really been helping.  I'm also still doing IVIG infusions about every three weeks to keep my immune system boosted. I still am not immuninized from after my transplant, because they haven't been able to get me off of the steroids, so they have to keep that up and I still have to wear my mask every where I go, because I don't have an immune system. Any little virus could be really dangerous. I'm also still on 16 hour fluids at home, so I carry around my heavy backpack with me everywhere I go. But thanks to my fellow cancer slayer Cayden, he hooked me up with some rad Christmas lights to deck out my backpack with. So we've gotten pretty festive around here. Thanks Snells! My Kidney's are really damaged, so that's the main reason I have to keep up with the nightly fluids.

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To keep you all updated on the exciting things going on in my life, because you know there is a lot of that, I'll start with my surprise trip to Disneyland. My awesome parents, and my best friend Madi and her mom, Lee, kept the best surprise for about a month. They had been planning a whole Disneyland trip without me knowing for my birthday, and they all kept it a secret...and if you know any of them, that's really hard to do. Well they took me to lunch a week and a half ago, the Saturday before we were going and gave me a letter surprising me with the trip. We had THE BEST time! Everything was decorated for Christmas and it was pure magic. We ate all the food we could and just had the most fun time together. It was my first trip out of the state since Utah, and I was nervous, but everything went well and we had the most wonderful time! How could we not...we were at Disneyland...at Christmas? I also got to participate and host the Ignite Hope walk at PCH this year. It was a wonderful way to kick off the holiday's and so much magic and love was felt that night. Just seeing everyone's candle light's and lightsaber's light the night and see the patients looking down from the window was truly inspiring. I remember being that patient in the hospital on Christmas, and they truly do everything they can to make you feel special and make your family feel special. My family still says that, that Christmas three years ago was the most special Christmas we've had. Not because it was a happy time, but because it was a special time with loved ones and all about family. 

Another really exciting thing happening is my Melodic Caring Project video is FINALLY coming out and will be in a theatre for people to see on January 4th. The crazy thing is, tickets already are SOLD OUT! We literally have the best support from family, friends, nurses, doctors, and so many others. I can't wait to see it. A HUGE shout out to the Melodic Caring team for the amazing experience on putting it together, the trip, the shoots, the shows, just about everything. You guys are one incredible team. Can't wait for everyone to see it!

Lastly, I can't believe Christmas is just around the corner and the new year is upon us. I've had a lot of time to reflect upon my savior Jesus Christ and his birth and also his atoning sacrifice for us. It is so comforting to me to know that he has felt everything we have and because of him we can live again and be perfected through him. I am also so thankful that I can be with my family forever. It is such a blessing to know that. 

By the way, If you're in need of a cute Christmas outfit, head on over to Lizard Thicket Boutique down at Dana Park. This cute outfit I'm wearing is all from there and so fun and festive, and also so cozy! They literally have the best holiday pieces right now. It's not to late to go grab a cute outfit! Plus, they have the best customer service and prices and will help you pick out your perfect outfit for your Christmas or New Years party! Tell them I sent you in! XOXO

http://www.shoplizardthicket.com/

That brings me to the 30th which is my birthday but more importantly my brother and cute future sister in laws wedding. It's going to be a beautiful day, and definitely a party. I am so thankful for everyone's constant support in this long battle. For the messages of love and encouragement. I hope everyone has a Merry Christmas and a Happy New Year!!

P.S Brooks is still as cute as ever and gets all the attention in the house. We love her to pieces and she gives the best hugs. She also LOVES the neighbor boys, which is about the cutest thing ever.

Love, Kin

An Emotional Three...

As I sit here writing this post, I have tears welling up in my eyes. I look back on the past few months and it's been a roller coaster of emotion for my family and I. Then I realize it's been Three years today. Has it really been 3 years? Something that seemed like just yesterday, has also felt like a lifetime ago. 3 years ago today, I watched as a selfless mans' bone marrow was flowing into me, and every drop would mean a new chance at life, and in hopes my cure.

Since this day, so much "life" has happened. The good, the bad, the ugly. And I am forever indebted to Matthew (my donor) for each of those days lived. And I truly hope to thank him and give him the biggest hug some day.

The past two months have been especially hard on me knowing this day was coming. Since I finished my GED and had the whole New York experience, I had a new found confidence in me and I was finally feeling like I was moving forward a little bit. I never feel great, but I was pushing through the days. I had plans on attending Chandler Gilbert this Fall and everything was feeling like it was falling into place...which it hadn't felt like that for a while. I was going to get to do "normal" things with MY peers. I knew it wasn't going to be easy, but I was willing to try.
Flash forward to June, and my two inpatient stays at PCH. We were all a little shocked, but we got through it. After the second stay I didn't feel like I fully recovered. Weird things were happening, and I just attributed it to me not feeling well still.

Later that month, we had plans to go to Utah to see my sweet cousins and sweet aunt and uncle. My sister was going to spend the week playing volleyball at UVU. I was excited to get away.
About 24 hours in I convinced my mom and aunt we NEEDED to go to the puppy barn to play with the cute pups. I always thought they had larger dogs, so none of us were going in searching for a particular puppy...although "remember when dad said I could get another doxie after tansplant...lol" ya well of course, the day before they had a litter of mini dauchunds brought to the store and there's not much more to say than....well, I fell in love with one, and she came home with us that night. Well I guess my aunts house, lol. We were hoping our other doxie at home. Flo, who we love, love , love, would love Brooks just as much as we did.

That next day I woke up so so sick. We didn't know what was wrong, I was still recovering from c-diff from the prior PCH stay, so my mom made contact with the clinic and they got me another antibiotic and I just rested the whole day. That night, everything changed. I spiked a temp, and my whole head and neck went stiff and I couldn't walk. My mom and I knew something was very wrong. She called the docs at pch and they told her to immediately get to Primary Children's Hospital.

When we arrived I went into septic shock and my blood pressure plummeted. They took me straight to the ICU. My line in my chest had to come out because that was one of the sources of the infections. I was a mess. I was at a different hospital with people I didn't know, I couldn't comprehend why my body was doing this, I was fine just yesterday? I just couldn't understand it. And my dad was still in Arizona. After they realized I couldn't have my line anymore they put an iv anywhere they saw a vein and they all blew, the ones that did stay could only handle small amounts of medicine, so everything that went in me felt like my arms were on fire, and my wrists just felt broken. Through all this I had three seizures. The last seizure, I coded. I remember having a weird headache and going into the seizure, and then coming out of it and just seeing my mom being hugged by someone in the room. My dad and the kids were all on their way back to AZ when they got the call, and they turned around and came back.
This experience for me and I know for my family too has been very raw and real. I thought I was going to die that day.I wasn't ready to go, what would all this fighting have been for? To just give up? What would my family do? This whole experience has made us talk about some really hard things as a family, and I'm so grateful for their love and sacrifice.

Since we got back from Utah, I've been very emotional. And just very physically tired and not feeling well. Also shortly after we got back our sweet Flo got out and was hit. This has been very hard on me.  She was my little buddy and always knew what I needed. Brooks has definitely been a tender mercy in all of this though, she was there as a distraction for the kids in Utah, and now she's here for me, to ease the pain a little. She's so fun and lovable, I love getting to see her sweet personality come out each day.

It's been hard to realize all those plans and goals I made for my self will have to be put on hold. Three years out, this is not where I wanted my body to be. I wanted to be going to college like a normal 19yr old girl, going out on dates, staying up with friends. It's a tough pill to swallow, one of my tougher ones. I'll get there, just not all at once.

A little update on how I'm doing right now... Friday I had my Picc line taken out that they placed in Utah, and it was replaced with a double lumen broviac. So I'm still recovering from the pain from that. Thursday we had a care conference with a bunch of my doctors to discuss the ongoing plan, my counts are still low, and I'm still on TPN. Their goals are to help me get off of sterroids "very slowly" and try to help with the bad headaches and blurry vision. We're still working with GI for lots of stomach issues and pancreas issues, along with liver and kidney stuff!

Among all this there has been so much good. We have been blessed beyond belief and felt the love and prayers of so many. I have come to understand my savior a little better after going through this traumatic time in my life. He is there, and he knows what we are going through. The atonement has brought me so much peace through this journey and I know it's brought peace into my family's life to. I want to say thank you to those who have stood along my mom and dads side, along each of my siblings side. They are my world, and I know this has not been easy for any of them, so even if you sent them a text, Thank you, from the bottom of my heart.

There is so much good amongst all the bad, it's up to us to choose it. I am so grateful for my heavenly Father and his plan for me.

I intended in posting more pictures, but they wouldn't upload. Most are posted on my facebook page or Instagram page linked here...
https://www.facebook.com/kincankickit/
https://www.instagram.com/

Loving Loud in NYC

   

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     It all started with a few sketches, a camera, a love for fashion, and a little girl with big dreams in heaven...
If you've followed my story you know that I love fashion and I love to take pictures. Ever since I've received my camera from Garth Brooks, that passion for photography has grown and so has my love for fashion. So let me take you back a little...

     While I was in the hospital during my transplant, I was introduced to an incredible program called the Melodic Caring Project. They live stream concerts to patients all over the world to their hospital room or home and make them feel like the rock star. They came on at a time when I needed it most. I was so sick, and losing hope...but hearing Jason Mraz shout my name out lifted my spirits. Since then, I've listened to a ton of live concerts, and they truly make me feel like a "rock star". Music is so so healing.

I've become very close to Stephanie and Levi Ware, who created this amazing program.  My mom and I were invited to Seattle to speak at their Gala in March. My older brother, Zack, got to come along so it was really special to have him there with me. It was everything beautiful and amazing as expected. Before hand, Levi's cousin, Michael came to film my story down here in AZ. He came to my ECP appointments, and really got to know me. Michael, and his girlfriend, Trisha, really connected on a personal level with me,  and I had the best time. He came to know of my love of fashion and knew that I loved like LOVED Kate Spade. Michael had contacted them (Kate Spade) and had them send me a couple of gorgeous dresses for the gala that night. I was blown away. I got to wear one of them that night, and I felt so beautiful. Later that night, while I was on stage speaking, a video came on of Michael's cousin, Daniel, at the Kate Spade store in New York. He had found out that my family was going to New York in April and wanted to make the surprise even bigger. I was getting to go to the Kate Spade store in New York, have my own stylist and pick out my own bag and dresses!! Ummm, a girls dream right?? 

Fast forward to this past week. We headed to Philly for my sister Hattie's volleyball tournament for a few days. The trees were all in bloom, and it was just so beautiful. On Sunday, we headed up to New York. I had no idea what I was in for. When we got to the hotel, we were unloading our luggage and my back was turned.  Suddenly, I hear cheering and see my siblings and my mom smiling so I turn. I see a big camera with lights and Michael, Trisha, Daniel, and two beautiful girls holding a sign saying "Welcome to New York McKindree!" I couldn't even believe it! 

I've literally never been so surprised in my life!! I had noo idea that they were going to be there. Later that night, we all went to Times Square and filmed and danced in the street. It was an adventure as we walked into the Fossil store and Daniel's handsome face was on every wall. He's so humble and kind, but he really is a big deal. (model status) I felt like a rock star for sure. It was the most fun night. 

That evening, they gave me a letter to meet them at 8am so that we could go to Central Park for a little to film, then at 10 we would head over to Kate Spade. Ahhh!!!! The Kate Spade store was like my heaven on earth. I got to go up to the Madison Avenue Collection room where they had Macaroons and drinks for us up there, along with special dresses and clothes they only have in that room. There also was a letter sitting on the table. I opened the letter, and it was from the one and only Deborah Lloyd (Kate Spade owner)! Like whattt!? That doesn't happen! How could the day get any better? Well it did. 

My personal stylists took me all around the store and let me pick out anything to try on. I had a little fashion show for the whole crew. It was beyond fun. I ended up with two incredibly gorgeous dresses, a pair of shoes, and a bag. 

While there, I got another letter with the second surprise of the day. It said I would be meeting the one and only Daymion Mardel, who is a fantastic fashion photographer in NY. He shoots for Vogue, Gap, Lands End, Nautica and a ton of others all around the world . I was so honored. 

When I met him, he told me before our interview that I had to get "glammed" up. lol! So I got to get my hair and makeup done. Ish Makeup presented me with an amazing box of new makeup products! WOW!  This was so fun for me. After, Daymion and I had our interview, and he had another-YES another- surprise for me. I would be the fashion photographer for the day. So exciting, right? Learning from him...with his entire crew...on a "real set"!

A little while ago, I had sketched some designs of my own and sent them to Michael and Danny because they wanted to see them. While I was behind the camera at the shoot, Giselle, who is a fashion model and who had been hanging with us the past few days, walked out in one of my outfits. THE ONE I DESIGNED!!!! I literally started to cry. I would be the one to photograph my own design! No words. As Daymion is helping me direct the shoot, he tells me there's ANOTHER surprise. So, an amazing designer walks out with another one of my designs. She had created both of my designs by just looking at them. I was just speechless. It was so incredible to see them just come to life. 

I also am currently working on another project with Comfy Cozy For Chemo with Lorraine Tallman. I'm helping with a teen line so that teens can wear the tee shirts and still feel comfortable and fashionable while having dignity at the same time. This was the next surprise. I look over and Lorraine comes out with a few of our new teen line designs. I had NO clue she was in New York. I was shocked!! This day just kept getting crazier and crazier! I couldn't believe what Micheal, Trisha, and Danny had pulled off. Oh and my tee shirt designs for the Melodic Caring Project were brought out too. THANK YOU Melodic Caring Project for your vision!  Hattie and Jace got to wear my t-shirt designs in the photo shoot as well.  We had a great time together!

     It was a fun-filled day with surprise after surprise, and I just couldn't believe everything they all did for me. There is so much good in this world. I'm still processing everything, and I'm so thankful my family was there to experience it with me and be a part of it. I can't wait to see the video Michael puts together. 

The next night we went to Wicked, thanks to Daymion, and had the best time as a family. It's my all time favorite show and seeing it on Broadway makes it that much better. Before entering the show, Pamela presented me with my own photo book with polaroid photos she had been taking during the amazing surprises.  It is a treasured gift!

I can't thank everyone involved enough for this experience. Thank you Michael, Trisha, Daniel, Daymion, Lorraine, Kate Spade NY, Giselle, Pamela, Melodic Caring Project, Levi and Stephanie, Comfy Cozy's, Jinglin, Hudson Studios and everyone else who helped! I couldn't be more thankful. I'll post the video when I get it. 

PS. I don't post this to brag about my experiences, but to remember and for myself. It was an amazing experience for me that I'll always remember.  It has allowed me to think towards the future...to see the possibilities...and to know that I CAN find joy in my passions.  My heart is full!

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XOXO, Kin

Spring Hues, Winter Blues

  

  I can't believe It's already almost February into the new year. This winter has kind of seemed to drag out, and I'm looking forward to the brighter, sunnier days ahead. Don't get me wrong, I love bundling up, and putting on a cute jacket and boots...but my body is just not made for the cold. Good thing I don't live in snow, I would probably die. Lol.
     So much has happened in the past few months it's kind of been a blur. With the holidays, My 19th birthday, the New Year, and the complexities of everyday life; I'm definitely ready for a fresh start. It's hard seeing everyone my age move on, get on with their lives, and I feel like I'm just kind of stuck here...trapped in the same place. Not the same place I was 2 years ago during my transplant, I've definitely improved. But I just expected to be moving on with my life by now. Going to college (normal classes that is), finished with high school (finishing up my GED), meeting new people, getting better, and just done with all things medical. But that's not gods plan for me, and I'm trying to hold onto that.
     My health remains pretty much the same. I had tried a four week trial of a drug called Rituximab (chemo), to try and see if that could help my platelets and get me off of steroids quicker and in hopes also help my GVHD of my stomach. It unfortunately didn't do it's job, so we are back to the drawing board, and the doctors are doing a bunch of more testing to try and figure out the next step in my care. As in everything I try to remain hopeful. I am continuing with monthly ECP and nightly fluids along with the daily pile of pills. Please pray that the doctors will be able to find a solution along with the neurologist that she will be able to find something to help with my horrible headaches.
     I was able to have a quick get away with my granny this past week. It was spur of the moment and impromptu; the best kind of trips. We decided to go to Disneyland. I just needed to get away to somewhere "Happy" and Disney is that place for me. Just the sights and smells changes my mood. I think it can brighten any one's day. I was so blessed to be able to share that special trip with my granny. We had the best time, full of happy memories, good food, and laughs that I will cherish forever.

    

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     I also wanted to share a few looks from Lizard Thicket Boutique. Spring is coming upon us, and I'm loving the colors and styles. These two tops are so versatile and can be worn during the day, and turned to a night look so easily. I love the flow, and easiness of both of these tops. One trend I've been loving is the ruffle sleeve. This white top has the perfect ruffle sleeve, and the cutest back detailing. I dressed the top more casual with a pair of tennis shoes and a scarf, but this could be paired with boots to dress it up a bit. This adorable blue and white striped top is probably one of my favorites I've blogged about. It's SO comfy and light and perfect for the transition from winter to Spring. It also has a beautiful back. I paired it with embroidered jeans and flats to give it a more casual look too. Both of these shirts are UNDER $35.00!!! Such a great deal. Make sure to pop into LT for all your outfit needs!

White Ruffle shirt: $34.50 (Lizard Thicket)
Blue& White top: $32.50 (Lizard Thicket)
Tennis: Adidas
Purse: Kate Spade

jeans: Lizard Thicket & Urban Outfitters

http://www.shoplizardthicket.com/

 

 

 

 

 

XOXO, Kin