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...
Thursday, April 20, 2017
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!
Tuesday, January 24, 2017
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.
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)
Purse: Kate Spade
jeans: Lizard Thicket & Urban Outfitters