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:

 



August 23, 2014. A day I will never forget.

This past week has been filled with so many different emotions. I finished chemo on Wednesday, but I've been feeling super nauseous, vomiting and having horrible migraines since. Transplant calls that the "transplant normals" unfortunately. Luckily, we've got it managed and I just slept most of the week.

Friday came around and the week had just been a blur. I of course opened my instagram and was shocked to see my school, Higley, go "pink4kin"! The whole school wore pink in my honor and signed lots of posters, and yelled "KIN CAN KICK IT" over a video. I was honestly so shocked. Can you guess what my family and I did? Yep...you're right...we all bawled our eyes out. I have the greatest support. I could not be more blessed. Thank you Higley High, from the bottom of my heart. You all rock!

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Then Saturday came around. August 23, 2014...will be a day I will NEVER EVER forget. My new "bone marrow transplant birthday" they call it. Today I got my new bone marrow. How amazing is it, that a tiny blood like bag could be filled with marrow, with new life, my new life. Life from a generous donor whom I've never met. Simply amazing.

The day started out early (well early for a girl who likes to sleep in) and pretty normal. The room filled with people I love, nurses, and mama Douglas; it was so calm..(besides the vitals every 5 minutes) . Then my wonderful nurse Aiada, brought in the bag of bone marrow. She hung the bag and I slept after we took some pics of course. And just like that it was done. My mom, dad, hattie, jace, granny, and jobe family were all by my side. We all sat in tears and with gratitude. It was the most amazing experience. To the donor that I don't know, thank you for saving my life, thank you for being so willing to donate your marrow, thank you for giving me this second chance at life. I am so grateful.

 

This is just the beginning, it's not even close to being over, and it will get harder. But I'll get there one step at a time. Now it's time for my new cells to start growing...I've got three words for ya cells...GROW CELLS GROW!!!

 

HAPPY BONE MARROW TRANSPLANT BIRTHDAY TO ME!!!!

 

The good with the bad (transplant days -23 through -14)

This week has been long and challenging. I was admitted into the BMT unit at PCH last Thursday to start the pre-transplant regiment. So, I apologize for my lack of posting. The week has been pretty exhausting and I've been pretty out of it.

To catch you all up...
So last Thursday I was admitted and scheduled for my line (broviac) placement. Everything went good and I have a fancy new line on the right side of my chest now. Along with the port. The broviac will hopefully make for a few less pokes, easier blood draws and an easier way to get meds in me through. It's nice...but the down side is no showers and we have to be very very cautious with it so there won't be line infections. The next day I started a chemo called Campath, which killed all of my T-cells. They did a trial run to make sure my body could handle it. I was pre-treated with Benadryl and other meds to prevent reactions...but the Benadryl completely knocked me out for a good chunk of the week. It was actually quite nice. I did Campath the next four days. Chemo can change your taste buds and it sure did that to me. Everything tasted different and nasty... even Diet DP if you can believe it.
I did pretty well with the Campath the first few days, but the last dose I broke out in awful hives. I was covered from head to toe in what looked like giant welts. It was pretty miserable. Thankfully, Benadryl was given and I was knocked out again, lol. The rest of the week went pretty smoothly. I was going to be discharged yesterday (Thursday) but I woke up with hives again that morning, so they had to keep me in. Luckily this morning I woke up feeling a lot better and with no hives, so they were able to let me go home. Home as in an apartment here in phoenix. While we were getting ready to be admitted last Thursday our house flooded and so my doc wouldn't let me go home, home because of the risk of infection. None the less, I'm grateful to be outta pch for a week... away from constant beeping of the monitors, countless meds and be able to be with my family. It's the little things.
I'll be re-admitted this upcoming Thursday for the long stay. It will not be easy, but I know with bad things comes the good. There's a light at the end of the tunnel, I just need to get there.
Dueteronomy 31:6
Be strong and of good courage, fear not, nor be afraid of them: for the lord thy god, he it is that doth go with thee; he will not fail thee, nor forsake thee.

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This week I had so many wonderful visitors, texts, notes, etc and I definitely felt loved. It made the week go a little faster and become a little more bearable. I love you all so much!

 

I'll be back at PCH next week ready to "kick it" a little harder. #KinCanKickIt

 



Kickin' It

Through being sick, I've seen people come together in ways i never knew they could and have seen compassion shown in many, many ways. It's an amazing thing. I never wanted to be "the sick" girl that needed people's help or needed the extra attention, but in reality I was, and am. But I think with trials like these, there are things to learn, and what I needed to learn and accept is people's help and support. Stepping back and realizing how many people care and support me in this journey is absolutely amazing. From the pink hair, the endless sweet texts and letters, to the iPad, meals, mini fridge (for my diet dp of course) and decorations for my hospital room…I have felt so supported and so loved. I know my family has too. Let me tell ya…it's a great feeling people. So, THANK YOU ALL!! 

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To expand more on the iPad, mini fridge, book of notes, and decorations for me room…:

So, at the start of summer, I had gone to lunch with two of my friends, meg and madison c.  The impending transplant was brought up, and meg had asked if there would be anything I would maybe like to have for my long stay in the hospital. I jokingly said "oh an iPad, duh", but I was completely being sarcastic. I totally forgot I had said that. Little did I know,  meg had an idea! She decided to rally people from the community and my church and help (but I had NO IDEA).  Then, my mom received a sweet text from my Aunt Kara. She and my granny invited us to lunch last Thursday.  I had had a rough week…not feeling well and on another antibiotic…so I was a little hesitant to go (I don't like people seeing me "sick").  I pulled myself together because I knew it was an important day.  To my great surprise…kara drove to my granny's for this "lunch date".  I walked in and there were the cutest decorations, and some of my favorite people were standing in the room. It was like a surprise party, so fun!  Inside, I was overwhelmed with gratitude for these amazing people--meg, lisa, kara, granny, hattie, kate, maylee and mom. I am most comfortable at my granny's house, so this made not feeling well a little better.  Honestly, I couldn't believe what meg had organized…she gathered beautiful notes of encouragement from so many of you, a new iPad and awesome case, the fridge, comfy blankets and pillows, a perfect ipad bag, soft pj's and much more.  How lucky I am to be surrounded by such incredible people--THANK YOU! I know my response wasn't as exciting as they had all hoped for, but the reality is that when you don't feel good…it's hard.  I am grateful for the understanding of the people who love me.  This is something I will always treasure. 

While at granny's for lunch, we surprisingly got a call from transplant. I knew it either had to be great news…or not so great news. Well, it was great news. They said that transplant WILL be happening THIS thursday, yep you heard that right. I was not expecting to have another date that quickly. All of those prayers defiantly helped. I don't have all the details, but i will be admitted on thursday and have my line placed in my chest. This will not be an easy road, but I'm ready to "kick it"!! Stay tuned for more posts!! 

#KinCanKickIt

oh ps. We have a PINK door…thanks aunt Kasey! 

XOXO, Kin

Going Pink

Hey everyone! Just a little transplant update, I've had tons of messages sent to me asking if we have a date yet…and the answer is no. My doctor had originally told us it would probably happen the first week of July, but while we were at PCH on Monday for labs and an 8 hour phsycology eval (transplant workup) we got word that they were having trouble reaching him. Then, Dr. Douglas called on Thursday that they found out the donor had been deployed to the military. People don't usually get that much info about a donor.  Luckily, I have more donors to choose from (which is very VERY rare). Now my Dr is trying to reach a new one, but this will push things back a bit, probably to the middle of July. 

You're probably wondering why my title is "Going Pink"? Well it's because Gilbert, AZ is literally going PINK! I have the absolute greatest support and coolest friends ever! So many of my friends (even the boys) have dyed their hair pink in support of me and I really couldn't be more grateful. Hopefully I'll get pics of everyone who did it so I can post in on here. It's crazy to me that something so scary can become so positive and really bring people together. I'm so so grateful. (Big shout out to Candice Shumway who is basically like superwoman and who has dyed tons of peoples' hair pink, love ya Candice!)
#GoPink

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Something fun from this week… I got my License!! 6 months late, but that's ok lol! Also, my mom, sister and I are on a little stay-cation in Phoenix! You know… a vacation in AZ? It's been lots of fun being able to have quality girl time, we needed it before the crazy started. 

XOXO, Kin

And so it begins…

//Hi friends//

This week has been very long and somewhat exhausting, so that's why I haven't been on this week. I spent most of my time at PCH and at home not feeling well, but I did have some fun times. 

Last Thursday, my aunt Lacey came into town and we had a lot of fun. Since I'll need a a sterile environment to come home to, a few of my aunts, uncle, and granny were able to come home and help us start cleaning and re-doing rooms. Thank you so much, you guys. 

Monday, my favorite day of the week (missionary Monday), I got a special picture from my brother all the way from Africa!! Made my whole entire week! I love and miss him so much! 

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I've started the pre-transplant work up, which is basically a whole bunch of tests/appointments to make sure my body can handle what it's about to go through with the transplant. I started Wednesday. That day I had a GFR nuclear med study of my kidneys, CT scan, X-rays. The GFR test took ALL day because they had to check my blood about every two hours after they had injected dye. Really thankful for my awesome mom to help the time pass a little quicker. We've gotten really close because we're together basically 24/7, she's like superwomen….simply amazing. Thursday, I had to go back to East Valley clinic for IVIG and a port re-access. I also got a few shots, which kinda sucked but my nurses are bomb and made it a little less painful. Friday, I went back to main campus for more tests: audiology, pulmonary function tests, and an echo and EKG. My sweet friend Meg came along for the whole day, She made it a little easier and we had lots of laughs. Thanks Meggy, Love you! I think my mom and I should just get a job there, why not get paid while we're already there? I mean we already know basically all of the staff, LOL! 

Thank you all so much for the love and support!!

#KinCanKickIt