Saturday, June 28, 2014

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!)
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. 

Saturday, June 21, 2014

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! 
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!!


Wednesday, June 11, 2014

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. 

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! 


Friday, June 6, 2014

Are we in AZ?

Today was too fun! I started out the day pretty early (well early for summer haha) with a visit to the PCH clinic to get my port re-accessed, then another trip to the fertility clinic. While we were there on Wednesday, Angel Mamas provided Madi and I with a certificate to go get a blow-out & a makeover at Pucci Salon in Scottsdale. 
So, since we can't go on an actual vacation, we treated today like we were in New York getting a professional make over. We got a blow out by the awesome Michael Becker, and our make up done by the fab Lauren Ballard! SO FUN!! After, we went to the cutest Crepe shop & had the yummiest crepes. So of course we felt like we were in Paris. Days like this make up for all those crappy ones. Thanks mom & Hattie for the pics!


Wednesday, June 4, 2014

Wednesday Shenanigans

Today was started with a trip to the fertility clinic in Scottsdale. My best friend Madi (M-Swiz) came along for moral support…and just because we're basically inseparable. She comes to most of my appointments with me, can you say amazing friend? I was just going for labs today, so no biggie. But, we had the opportunity to meet Shira and her cute family, from Angel Mamas. An INCREDIBLE organization that has raised the funds needed for the egg retrieval process. THANK YOU THANK YOU THANK YOU, Angel Mamas for everything and for helping me be able to do this.

After, since we were in Scottsdale, we had to make a trip to scottsdale fashion square of course. (Yes…I'm a big time shopper)! Madi and I weren't complaining. We then came home & took a few pics. Really thankful I have a best friend like Madi that is there through everything! We have the funnest times.

Tuesday, June 3, 2014

Good Reads

Oh John Green, you're gettin me! Gettin me in tears that is…

Well this is rare… 

If you know me, you know I DO NOT READ!! Haha I would usually rather do anything besides sit down and read, like how boring! I'd like to blame it on daily headaches, but the truth is, I just don't enjoy it. That is, unless I have a good read. 

I've been super anxious for the new movie "The Fault in our Stars", so I'm doing something very VERY rare, and trying to finish the book before the movie. Surprisingly, I'm loving it. Let's hope I can do this…& let's hope I don't bawl during the entire movie lol! Hits pretty close to home…

Monday, June 2, 2014

My Story


I'm Mckindree Patton, some call me "Kin" or "Kinny"! Let's start from the very beginning…

Growing up I was a competitive gymnast. I loved it, it was my passion. I had always had a dream of one day becoming a collegiate gymnast. Throughout all this time of doing gymnastics, I would always be sick. Getting infection on top of infection. It became harder and harder to do what I loved everyday, and we realized something was really wrong. I should not be getting this sick this often, so we went to my immunologist. After lots of testing, we discovered I had an Immune Deficiency called CVID (Common Variable Immune Deficiency). With this disease my body cannot fight off infections, meaning I catch the "common cold" very easily and my white blood cells don't produce those antibodies to fight those common infections. For this I receive an infusion called IVIG every three weeks to help those antibodies produce.

In July of 2010, the same doctor realized my red blood cell count was steadily declining. So, I was sent to a Hematologist/Oncologist at Phoenix Children's Hospital. Lots and LOTS of blood tests, bone marrow biopsies, genetic testing, and visits to expert doctors around the country happened. No one could figure out what was going on. They all said I was "abnormal" and a "mystery", they were all stumped…I can't even tell you how many times I heard and keep hearing those words. While being hospitalized in July of 2011 for a bad infection, results from Cincinnati Children's Hospital came in. We had been waiting for answers for a long time. The diagnosis was Diamond Blackfan Anemia (DBA). This is a very very rare form of bone marrow failure in which my body doesn't produce red blood cells. There are only about 700 people around the whole world with this rare diagnosis. I guess the doctors always knew I was special lol. For this I receive red blood cell transfusions every month to keep me going. With the transfusions comes a separate problem called iron overload. Since I have received so many blood transfusions, my iron levels are very elevated. I am hooked up to a medication called Desferal every night through my port. This medication gets rid of all the extra iron caused by the blood. But… I cannot thank blood donors enough from everywhere for their donations, for without it, I may not be here.  

Since 2010/2011, I have received countless IVIG infusions and roughly 80 units of blood. My family and I have recognized the importance and need of blood and bone marrow donors. We've been able to speak at events, host blood and marrow drives, and even developed an organization called "Kinny's Kause" (link on the side) to make people aware of not only DBA, but any other bone marrow failure and create awareness of the need for blood and marrow donors. 

Because I have a bone marrow failure, we always knew of the chance that I would one day need a bone marrow transplant. Two years ago, I met with my amazinggg transplant doctor, Dr. Douglas at PCH. We had talked about it, but kind of put it on the back burner. She needed more details about both of my diseases, so we have gone back and forth to the NIH in Maryland. Throughout these two years, we have found out I have over 100 matches on the marrow registry (which is a HUGEE blessing because none of my siblings are matches). Finally Dr. Douglas got some information…so here we are. Two long years later. We met again with Dr. Douglas on May 15 of this year and drum roll please…..we found out I will be undergoing a bone marrow transplant this July. A young, male donor  has been selected, I want to know who this person is so badly so I can go up to him and hug him to death.  I mean he is kinda saving my life and all HAHAHA! 

The transplant will be allogenic, meaning a non-related donor. The donor will undergo a "surgery" where over 600 extractions of marrow will be gathered. This type of transplant will hopefully reduce the risk of my body rejecting the cells and reduce the risk of GVHD. Before the transplant, I will undergo MANY tests, mri's, body scans, etc. to make sure my body is capable of handling this major process. I have started the egg retrieval process so that I have options in the future. Since I will be on chemo, there is a risk I could be infertile. The process in hard, but I'm so willing to do it if it means being able to have my own kids one day. After all this, before the actual transplant, I'll be admitted into PCH for 7 days and be given antibodies to kill off my t-cells. I'll then go home and be re-admitted for chemotherapy (yes, i'll lose ALL my hair… but I'm not too worried). The cells from the donor will then be infused into me, kinda like a blood transfusion, and then we wait. I'll be hospitalized roughly 10-12 weeks and in isolation. It all depends how my body responds to medications, feeding tubes, etc. We keep waiting until the cells engraft…it usually takes about 100 days. I'll be very seceptible to infection, so no fast food, Diet dp from circle k (sad face), or lots of people. TOTAL ISOLATION. After the cells engraft, I'll hopefully be able to go home…I won't be able to be around a lot of people or still not be able to go out for about a year, so still isolation when we get home. All of this is very scary, but the hope is I won't have to live off someone else's blood or live with chronic infections. That makes me happy. I could possibly be normal and live a normal life, happy and healthy. It will be the hardest experience of my life, but with the amazing support I have with family and friends, I can get through it. 

My hope with this blog is to share my everyday experiences, not only going through transplant, but through my love of photography, fashion, and anything else. It's essentially to document my journey of my life. I hope you will enjoy this blog and I hope you can find a little inspiration through it. Welcome to "My Journey"…