I can do hard things!

     There is not much to report as far as my health goes. I haven't wrote on here for a while, but i have received two more transfusions since the last post. That I think makes my ninth transfusion. My Iron levels are elevating each transfusion, and once it gets to about 1000, I have to start iron chelation. This gets rid of all the extra iron, that my body doesn't need. Iron Chelation is very important if you are transfusion dependant like me! Having to much iron can be a silent killer, so the chelation is very important.
     A boy about 12 or 13, recently passed away from DBA. He is a resident in Mesa. His family hasn't been able to put him to rest yet, because of money. They are trying to have fundraisers to try and help his family. My family is trying to help with a fundraiser, so I'll post when I get the info. The family is very sad, so pray for them, please!!! Heavenly Father has a wonderful plan, and he knows what our life is going to be like, everything happens for a reason. He doesn't give us hard things for nothing, he knows we can get through it, he knows we can do hard things!
     Also, we will be meeting with the transplant team, sometime soon! I know many of you already pray for me, but keep praying, and pray that one of my siblings will be a match, so that if ever in need of a transplant, one of my siblings can be a match! This would mean a lot! We are also, discussing going back to the NIH( National Institute of Health), back in Maryland. They know a lot about DBA, and would be a great addition to my medical team, and a great resource to have. One of my cute friends Maddie, is in need of a Bone Marrow Transplant, she also has DBA! You can sign up to donate, and be a possible match for someone in need! It is so easy! Just go to www.bethematch.com, and register.
     I have started up diving again. I absolutely love it! It feels good to be active again. It is so hard on my body though, which is very upsetting, because I was a high level gymnast, and could do anything. Nope, not anymore!!!! But, I believe in myself, and so does everyone else! "I can do hard things".
   
     I am having another blood drive on April 28th. I will post more information once I get it! BeTheMatch will be there for bone marrow swabbing, so you can do that too! You never know, you could potentially save someones life!

    OK, so there is a lot to report, but this is my everyday life! Its exhilarating, and sometimes scary, everyday is a new day. We just have to always remember, WE CAN DO HARD THINGS!

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!

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

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!

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!:)

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

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!

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!