Thursday, December 29, 2011

A Wonderful Time

I really cannot believe that another year has passed. It seems like just a few months ago I was happy and healthy, and just in a matter of two years all of that has turned! From being diagnosed with my Immune Deficiency to being put in the hospital, so much has changed. I don't know where all of my time has gone.

It's really hard to believe that a year from December seventh of 2010, I had my first bone marrow biopsy. This one biopsy led to many wonderings and discoveries! We have been to so many doctors to try and figure things out, we have traveled to Cincinnati.  I have been put into the hospital, found out I have DBA, started more IVIG treatments, Blood Transfusions, surgeries...the list goes on and on. Seriously, where has my time gone? But, for the first time in a long time, I feel like I am in a good place. I really have so much to be thankful for.
   
This past month has been good and bad. I have had a lot more sick days than usual, and it kind of feels like things are getting worse. I have had a lot of new symptoms, and I'm not real sure why. I had a blood transfusion because my numbers were really low. It made me feel good for about two days, but since then I haven't been feeling well at all. I don't understand! But as usual, I have to keep pushing on!

I finished this semester of school, and that is a total relief. It has been so stressful, but I made it through and did really well! I had a wonderful Christmas, except for the fact that I was very sick and almost went to the Emergency room! But it was very nice! I got to be with my family and even go to church! Having Christmas on Sunday was so nice, I really felt the spirit of Christmas.

I went to clinic and to the orthopedist this month for a check-up, and to see how my arm is progressing from surgery. The doctor said it was dong great, and that I should be able to do some therapy soon! I am thrilled! I also went to clinic to have a transfusion. While there, my mom and I talked with Dr.Shah about the possibilities of transplant. At first, I was kind of shocked! I kind of had a breakdown, but we are just exploring it. Although the thought of a Bone Marrow Transplant scares me, there is a settling feeling that goes along. It could possibly cure me. That thought gets me excited. We are going to see the transplant team sometime in January. Remember, we are just exploring the option!


video
Well I had my blood drive on the 27th, and it went amazing! I could not believe all of the people who came! I was totally overwhelmed over the kindness of people. People made huge sacrifices to come and donate their blood to someone in need! I had over 120 people come and donate. Although, some weren't able to donate or able to make it, it really was the thought that counted! I had family, friends, school teachers, and so many others that came to donate! The United Blood Services even brought a bus to accommodate more people who wanted to donate! All I have to say is, THANK YOU! It really meant so much to me. You have impacted so many who receive blood, just like me. Remember I am having another blood drive on April 28, 2012! Make sure to sign up and come donate! Up above I put together a little video of only a third of the people who came! Thank you sooooooo much! Have a wonderful New Year! P.S. tomorrow the 30th is my birthday! I'm going to be 14... I can finally go to the Stake dances! Whoooooo!<3

Monday, December 5, 2011

Dot...Dot...Dot!

Wow it has been quit a month. I apologize for the time its taken for me to update by blog! Anyway I'd like to sum up my month with two words, gratitude and pain! I hope everyone had a wonderful Thanksgiving. I know I did! There is so much for me to be grateful for. My wonderful family, my doctors, awesome friends, and my life. I have been trying to have a better outlook on life, my life may not be how I want it to be, or how it should be, but how can I not say that I have a good life! I have anything I ever need. I have the opportunity to give back, and that is what I should be doing. This month I am partnering up with United Blood services and Mercy Gilbert Hospital, to sponsor a blood drive on December 27. It is the best way that I could give back. Blood is life sustaining for myself and other children at Phoenix Children's Hospital. You could give the '' Gift" of blood this Christmas season. If you would please consider giving blood this season, it would be greatly appreciated! Did you know that for Arizona, they need 700 donations a DAY! If you or someone you know who would like to donate blood, please contact my mom at Aimee@bananahorn.com, or go to Bloodhero.org and sign up. If you email my mom with your phone number, name, email address, and also the time you'd like to donate, I can sign you up! PLEASE...JUST CONSIDER IT!

This month I received another blood transfusion, and my IVIG. Two days after that, I had surgery to repair my, UCL. The doctor said everything went fantastic! Now, I have a really ugly scar, and I'm in a weird contraption! I like to call my scars my "Battle wounds!" Just  little something for me to remember that day by! This took place on November 17! I am still in a lot of pain, but my arm is healing and getting better each day! Thank you to everyone who stopped by! Love you all!

I am now part of the Arizona HopeKids! It is an organization for children with life-threatening illnesses. They have different events each week, that the whole family can participate in. I went to my first HopeKids event on Saturday, the 3rd. It was the Miss Arizona Trunk Show! Surprisingly, it was so fun. I didn't feel well, so that kind of put a damper on it! But Miss Arizona 2011, Jenifer Sedler, will be competing for the title of Miss America on January 13. I think that's when it is! Jenifer is a big part of HopeKids, and comes to many events, and evens takes regular visits to PCH! While at this event I met the cutest, sweetest little girl named Elizabeth. She had just gotten out of the hospital, from a 17 day stay! Elizabeth was diagnosed with Non-Hodgkin's Lymphoma this year. She has gone through many rounds of chemotherapy, but had to stop because she had a stroke! I felt so sad for this five year old little girl! She was bald, and the most beautiful little girl...EVER! I wish teenagers could pull off the bald look!!:) She ran up to me and gave me the biggest hug! We had an instant connection! When we arrived home, my mom and I just broke down crying! I felt so sorry for this little girl. Why did this little 5 year old have to go through this? I just thought how lucky I really was! Elizabeth was the happiest little girl though! I know Heavenly Father has a plan for all of us, and this is his plan for me and all the other really sick children, including Elizabeth! Please pray for her!

Although my life may be really hard, I am so grateful for my life! In the end, I'll be way stronger than I ever was, and I WILL be grateful for my trials. It can only make me stronger! And this Christmas season, I am extremely grateful for everything!
"With faith, anything is possible!"
Love you, Kinny!

Monday, October 10, 2011

Complexity of Life

     I have to say, life right now isn't a walk in the park by any means. Things have seemed to turn a whole 360 degrees to say the least. I fell like everything in my life has seemed to just collapse all at once, and for some reason I just don't get it!
     Lately I have not been my old, happy self. So much has happened in the matter of four months. My blood counts to continue to drop as the weeks pass. But as I said in the last post I've started monthly blood transfusions that have literally saved me. I really believe that if I wasn't receiving those, I wouldn't be able to even ride a bike down my neighborhood with my mom. But now I can say I can do it! I even got a new bike because I've had enough consecutive days that I feel well that I'm actually able to do the things I want. I receive those every month and I also continue to do my IVIG for my immune deficiency. To add... I received my port, and man has that been a lifesaver! No more vein blow outs! Whoooooooooo!

     To add a positive.... about three weeks ago, my parents went to New York, and us kids stayed with my granny. It was so much fun! But, while we were with her, my uncle invited us to a lecture presented by a Hematology/ Oncology doctor from the Children's Hospital in Alabama. He actually talked about blood disorders and mainly about Diamond-Blackfan Anemia. It was really interesting! He also talked about a different therapy for this disease that wouldn't involve the intrusive therapy, Chemotherapy like in a Stem Cell transplant.. It's called IPS Therapy, or Gene Therapy. All he would have to do is take a skin sample, and hopefully it would produce good cells that they could infuse into me. I really don't think it was a coincident that he came to Gilbert, Arizona, out of all places. And I am truly grateful that I had this experience.

     A negative is that my Ulnar Collateral Ligament (UCL) is torn once again. One more thing to add to my list of doctors and more things to handle. This time though, they are considering more Physical Therapy and even surgery. Although I totally don't want surgery,I think it is a good option for the better, because if I can't even put pressure on it and it goes out of whack again, I probably need surgery. I mean I can't live my life like that. I need my arm to function!

     To say the least, my life is complicated. But, I can't do anything about that. I have to remember to live and not get caught in the wrath of worries and my daily struggles. I love all of you guys! Thanks for your support!
     Love, Kinny!


    
     This was right after my port surgery...everything went well, and I am SOOOOOOO excited I finally have it! Oh, and thanks dad for the " wonderful" picture! I look amazing!

I was hooked up to my third red blood cell, blood transfusion! Using my port for the first time was amazzzzziinnggggg!!!!!! Couldn't feel a thing! Thanks Lee, for the Diet Dr. Pepper and the Flancer's! Love you! These transfusions make me feel so much better!:)

Wednesday, August 24, 2011

The Road Not Taken

Over the past couple of weeks a lot of things have happened. I've had many infections, many, many doctors appointments, and school has started.

Today was my second Red Blood Cell blood transfusion. Everything went well, but as of right now I still feel a little awkward. Just seeing that blood makes me queasy! HaHa! (And I want to be a nurse!) Anyway, I've been to clinic twice in one week, to try to clear up my sinus infection. We decided to move forward with a treatment plan. The options were either months of steroids or monthly blood transfusions. My mom and I both knew the side effects of steroids, and we decided that I probably wouldn't be comfortable with that. I don't really need one more thing on my plate. So we decided to go ahead with the monthly blood transfusions. The only bad thing about that is there is the risk of iron overload. But, we thought this would be the better option for my own well being. Today before the transfusion they gave be benadryle through my IV, which was a good thing because I got to sleep for about three hours. Also, some of of my favorite people brought me Cafe Rio...My fav!
Guess what... I'm getting a port! My veins have officially given out....They are TERRIBLE! They keep giving out, so that port will be very nice! What they have to do is surgically put it in. It will be a little bump under my skin and that is where they will poke to get IVs in, blood draws, everything. It will be so nice! I will receive it on September the 7th.
People...you need to DONATE, DONATE, DONATE blood. You never know, it could be helping me or some of my friends at PCH. Thank you to whoever donates... It means the world!
I will continue my IVIG treatments and regular clinic visits.

Well school has started, and can I jut say that it's been a rough start. I have already missed about a week and its only been two weeks since I've started. It's been very stressful, but I try my hardest to be there as much as possible. My parents have been very supportive. We have tried to arrange a plan for me so that I can have a good year. One of the options was to just do my core classes and only half day. I wouldn't have to do my electives or P.E. I am totally open to this, and hopefully it could make my year a little less stressful.

I have taken the unexpected roads, and I will continue to move on. All I can do is keep a positive attitude and just Keep on Climbing!

By the way...Everyone go check out my caringbridge.org site...just click on website name and type in mckindreepatton just like I did.caringbridge.org









Saturday, July 16, 2011

Summer on the 7th floor!

     This past week has been an absolute whirlwind! As of right now I still can't comprehend everything that has happened! For all of you that don't know, I've been in the hospital this week. In my last post I told you all that I haven't been feeling well...well that hadn't gotten any better. I had actually had a very weird sinus infection that had spread to the lymph nodes in my neck. This was the reason that I was hospitalized. During the week while I was there, the infection had gone into my ears; I really haven't been in so much pain in my life. The thing is...I really don't believe that was the reason I was there. Ironically, my blood counts had been dropping and everything that was happening at home that the doctors never saw...happened at the hospital. The doctors finally experienced the side of me they have never seen...the very sick side. I really count this as a blessing from heavenly father, because now the doctors kind of know that my diseases are continually getting worse and now we can get on the right path to treat my Hemoc and Immunilogical issues. Also,  while I was there, I had my Bone Marrow Biopsy, my IVIG, and because my hemoglobin level was half of what it should be... I had my very first blood transfusion. Also while there, my Hemoc doctor that sent us to Cincinnati, got word that the ADA levels that they were testing were elevated(1.31 which is very high...and the Gene RPL11 has a mutation...so this confirms that I have Diamond- Blackfan Anemia.
     
     I really don't think that being in the hospital this week was a coincidence. I got answers from doctors and the help I needed that I may have not gotten if I was at home. If I was at home, we wouldn't of known that my Hemoglobin was low, so I could of potentially become very, very sick. So, that was a blessing in itself. I want to thank everyone who sent me cards, sent my mom e-mails, facebook messages, or texts, and came to visit me...and those of you who gave me the wonderful gifts. I love cards and gifts! Haha!               P.S. sorry to those who asked my mom if they could come to visit me and we said no. It was a hard week for me, and I just needed alone time. But, I love you all so much!

Thursday, June 30, 2011

A very long journey

This past month has been a fun but difficult one. Everything that is going on, hasn't completely sunk in yet. I've been back and forth to different doctors trying a different sport...diving, and just praying that my medical mysteries can be over! Through going to different doctors, I've found out some sad news. I really don't like being sad for myself, but I really am. My doctor's told me that I won't be able to return to gymnastics because of my arm and for my physical well being. I loved gymnastics so much, like after a long day I could look forward to going to see my coaches and friends at gym. It was a refuge for me. But... since I can't do gymnastics any more, I've decided to try diving. It's been a blast, and I love it! Also, this past month I've been to my Hemoc doctor a few times. My blood counts have continually been dropping, so they are thinking of another possible bone marrow biopsy right before school! That really overwhelmed me. That is like in four weeks!( I really can't believe how fast this summer has gone by!) Even though I've had the biopsy before, it's still a very scary thing to me!
This past week has also been very hard. I've been sick for the whole week! I don't even have the strength to get up to get a drink of water or to go swimming in my own back yard!I'm so ready for all of this to end. I guess all that I can do is make the best of my situations, and keep moving forward with all of this. Life is short, and whenever we have the opportunity to change someone's life, we should take all of those opportunities!

Sunday, May 29, 2011

Disney World

Aren't these so cute! Man.....Disney can do really cute and inspirational things can't they! I didn't even know they could actually write things on these hats, I thought they could just write names! This is my favorite saying....and I can have it on a cute Disney hat! Best of both worlds! ( Ceci....this was for you!) The Minnie Mouse was just soooo cute I couldn't resist buying it! My Disney World trip has been so fun! It's nice not having to worry about doctors appointments for a whole week and a half! Well it's getting late here, so I got to go.....Bye!

Wednesday, May 11, 2011

Schools out!!!!!!!!!!

Hey everyone! Guess what.... I only have about nine more days of school! Whoooooooo! My end of the year was ruined though, because we have finals the last week! What kind of "have fun" last week is that? Ha ha. Anyway, I'm so glad its almost summer. This year has been a tough one. Going through everything has just been really hard on me and effecting my school work! I haven't exactly been able to enjoy being a "7vy"! I don't even know how many days I've missed! Oh well... right!?
Guess whattttttt............................... I'm going to DISNEY WORLD! Whoooooooo! I'm going the last week of school after finals! I guess that makes the last week a lot better! I'm so excited. I think I really need this trip, to forget everything I've been through and just have a blast with my fam. Unlike going to Cincinnati, I actually get to enjoy this trip without any needles involved... that is unless I get sick! I'm kind of angry though, my mom said I might need to get a wheel chair or a moving chair to get around in Disney World because of my health and joint pain! Ummm, absolutely not....I'll look like an old lady!
OK..enough with school! since I've last wrote my blog, I've started my new IVIG treatment. It went, surprisingly really well! There was hardly any pain! That was really nice, especially because the Subq infusions were the most painful things I have ever been through! And with the IV, I only have to do it once a month instead of every week! That makes it even better! Next week is my next IVIG infusion.

Wednesday, April 13, 2011

Soul Surfer

Yesterday was an amazing day and a very inspiring day. My mom took me to go and see the new movie Soul Surfer. It was seriously the most amazing movie I have EVER seen! The movie was about a girl named Bethany, she loved to surf and she grew up in Hawaii. One day she went out to the ocean getting ready for a huge surfing competition when suddenly her arm was bitten by a shark. It was totally ripped off and her arm was gone. As the weeks and years went on she had a tough time trying to find her place in the world and trying to learn things with out arm. She was very sad, because she thought she would never be able to surf again. She always questioned and got upset that she was the way she was. But, one day she decided she would make herself surf again, and guess what, she did. Ya it was a challenge for her but she did it and she have faith and courage. The whole thing left me in tears, and it reminded me that I just have to move on, and I have to have faith and just believe I can do anything. Even if it's hard, we have to be strong and we have to "keep on climbing". I encourage anyone who is reading this to go and see this movie. I know all of you will love it as much as I did. And I know it will inspire you to have faith in anything and know that anything and everything is possible.


Just to let all of you know, I received (well my mom received) a call from Cincinnati Children's. They got the blood results back, and I have what is called Diamond- Blackfan Anemia. This is an abnormality in the bone marrow or a(Bone Marrow Failure) and red blood cells. I am thrilled they have a diagnosis. Let's just have faith this is finally it! Also, on Friday I go to the Hemoc doctor for further testing and the Orthopedist for my arm. Then on Monday I go to the Reumatologist for my joint pain. I am also starting the IVIG instead of the Subq infusions soon. Please keep me in your prayers and seriously, go see that movie! I'm thankful for all of you!

Friday, March 25, 2011

Sick once again

     Hi everyone! Guess what..... I'm sick once again. I was so hopeful that I could maybe, just maybe, get through a whole week of school. Ummm.... ya that didn't happen! This is how it goes, one week I have a great week, I feel great and I think the next week is going to be even better, but then I get sick and I can't go to school for even three days! It stinks. My goal though is to get through at least a whole week of school in this quarter, let's cross our fingers. Hey, I'm hopeful and I believe I can do it!

     On top of being sick, I've had a lot on my mind. It's just been really hard for me to know they(the doctors) haven't diagnosed me with something, and we're still playing the waiting game. People have asked me questions, like "so what did the doctors find out?" I haven't really been able to tell them because we haven't found out any answers yet, all I've been trying to tell them is that we're waiting on labs and test results to come back. That is really what's happening at this point and no one is able to really understand that.(except for my family, of course!) I don't really know how to put what I just said into better words. It has just been really, really hard on me, and I can't get over the fact that the doctors haven't diagnosed me with anything, so it's like we're starting from step 1 all over again.

Saturday, March 19, 2011

A bad day yet still hopeful

It feels like ages since I have written on my blog. Just to keep all of you updated, I arrived home from Cincinnati last night. I`m leaving very unsettled about the whole trip. It`s been very difficult for me to take in such a great deal of information in such a short amount of time. I`m leaving Ohio with no answers instead of more answers. That's the part that is really weighing on me. I was so hopeful in finding more things out. Although one thing is for sure, I don`t have mds. That is one thing I am more than grateful for.
We got a call from my Immunologist in Arizona. He wants me to try the IV form of IVIG. This is something that has been on my mind for a while. My Immunologist said that people can have different reactions to different things, so instead of doing the at home treatments, I would do The IV form of the Vivaglobin or Hizentra.  That is what he wants me to try to see if it has a different effect on me. Or in other words make me feel better. This is a feeling that both me and my mom have been feeling, to try this form of Vivaglobin. One thing I did learn from this trip is that I have to follow my heart and listen to the feelings I`m feeling.
Even though things didn't turn out how they planned, I am still very, very faithful and hopeful that something will show up in at least my bloodwork, or that later on the doctors will be able to finally be able to diagnose me with something then be able to treat it. I am prepared for ANYTHING that shows up, as long as it's an answer I'll be beyond happy!

Tuesday, March 15, 2011

First Day!

     Day one of testing and being at the hospital is OVER! Everything was great! I absolutly love my doctors and my team! I found out some very good and reasuring news today, I have no MDS! Of course thre is something definatly wrong with my bone marrow, its not MDS and i'm very grateful for that.

     Guess what, I beat my personal record on the number of viles of blood they had to take. It was 12 viles but today I got 14 viles1 Then tomarro i'm going to have 17 viles of blood drawn! Whooooo, another new record! Haha!

Monday, March 14, 2011

In Cincinnati!

     Hey everyone! I arrived in Cincinnati, Ohio, and it has already been a blast! You know me, I love my vacations! Its not really a vacation though, it's a visit to Cincinatti Children's! Haha! But hey, i'm game to find out answers! As long as I get better, everything i'm going through is worth it!
    
     So, tomorrow i'm going to Dr. Harris, the Hemoc doctor at the hospital. Then on Wednesday, i'm going to the Immunologist, Dr. Kumar! Although i'm sort of nervous, i'm super excited, i'm ready to find out answers to my health mysteries!

     As soon as we arrived at the Columbus airport we got a rental car and headed two hours to Cincinnati. The drive was amazing, beautiful scenery and houses, and we even saw a bunch of deer! It was absolutly AMAZZZZING! We finnaly arrived at the hotel after a long day of traveling. Then, we went to the mall, which is right by our hotel may I add, and just looked around. After that we went to the Cheesecake Factory. MMMMMM! Yummy! After we came back and are very tired, that is why i'm leaving right now from my computor! bye!

Tuesday, March 8, 2011

my doctor visit

     So, I went to my Hemoc doctor today, because I wasn't feeling well once again. They ran a bunch of labs on me and everything, once again came up normal. Every time the doctors take my counts, they all come up normal, even when i'm sick. It's very frustrating.
     The doctors are even confused. My Immunelagist thinks that my bone marrow is my problem, but then my Hemoc doctor thinks it's my CVID (Common Variable Immune Deficiency) that's effecting my bone marrow, so both are really confused. Well, I guess I just need to keep pluging through! I just need to keep the faith and keep on climbing!.....One of my favorite songs is " The Climb" by Miley Cyrus. Whenever I hear it it just remindes me that i'm ok, and that I just need to keep climbing. I have a really good friend named Carolyn (Ceci) Christenson, she is dealing with a lot of health problems but is very strong, she always reminds me of this song, and to keep what it's moral is in my head. I am very grateful for her example to me and for her strong faith.

  These are my blood counts today:
WBC: 3.7
PBC: 3.28
Hemaglobin: 10.8
Hematocrit: 31.7
MCV: 97
MCH: 32.9
MCHC: 34.1
RDW 14.0
Platelets: 280
MPV: 11.1

    I'm heading to Cincinnati in.....6 days! Whooooo! I hope that we can actually find answers! I would really feel relieved, because then we can know what we're dealing with, and then treat it!

Monday, March 7, 2011

Not feeling well today

     Like every day, I once again don't feel good! It sucks!.....My head is killing me, and i'm really dizzy! I'm sick of being sick! I just want to find out things! Tomarro, i'm going in for more lab tests, and hopefully get some answers. My doctors don't know what's going on with me......In December, I got a bone marrow biopsy. They all thought it was going to go well, but they found some abnormalities. That is my life story, we never know whats going on. Whenever we think something is going to turn out right, it doesn't!
    
     Even though I hate going to the doctor, i'm at least grateful that someone is so willing to help me! I never realized before that all they were trying to do was figure things out and just help me! I always thought they were trying to hurt me...hahahaha! I thought that though for a good reason though... they always sent me for labs, needle pokes, treatments, ect. All I know though is that they sent me to those things, because they cared about me and wanted to help me.

     On March 14,2011 I'm going to go to Cincinatti Children's to find more things out. We don't know exactly what I have, but we know it's not just nothing! I'm kind of excited, I get to go on a trip! Although I am going for more tests, a trip is a trip, and i'm happy!