Wednesday, July 24, 2013

Day +8 Bryan's H.O.P.E.

July 24, 2013

After a productive Tushy Tuesday, today was more about rest, recovery, and stretching. I have been receiving the neupogen shots since day +5 and I am beginning to feel some mild bone pain in my lower back and femur bones. The pain is very manageable right now. As long as I keep repositioning every so often I can get the pain to go away on its own. On a positive note, my white counts have gone from less than 0.1 to 0.1. I have made a commitment to listen to my body; and today my body said, "Slow your roll, Bryan Hinkle." So, for today, I will listen to my body.

This morning I had my door open while Dr. Burt and his team were prepping for their entrance when my nurse walked up to inform him I was experiencing some bone pain. Hearing this news Dr. Burt poked his head in my door gave me a smile and a thumbs up and said, "Great. We are heading in the right direction." When the team entered the room I had set the laptop up and was prepared to give them a grand presentation recapping yesterday's progress. Upon the completion of the presentation, Dr. Burt proudly step forward, putting both hands on his hips and said, "You need to share this information. I do not know why neurologists are so reluctant to listen. They just keep prescribing failed treatments."  Little does Dr. Burt know, but I am already planning on how I am going to share this information with the world. 

Ann and I have discussed how can we share not only the wonderful work being done here at Northwestern, but we also want to find a way to help others who are suffering from chronic diseases. Over the next year, I am going to be busy getting the paperwork in order to set up our non-profit organization. The name of this organization is going to be Bryan's H.O.P.E. This will stand for Helping Other People Endure. One of our first priorities will be to set up an educational division geared toward educating individuals about CIDP. Then, we will work on uplifting others during their hospital stay.  In the beginning, our contributions may be as simple as sending cards to individuals. Eventually, I would like to work toward providing care packages to patients. The ultimate goal will be to get to the point where the foundation will be able to assist individuals with chronic diseases and their families, financially. All of these ideas were simply stolen from individuals who have supported me over the last 20 years. I know how special it feels to receive a card while you are staying in the hospital. It is amazing how one small gesture can change someone's life. 

This foundation will merely be a product of all the love and support  my family and I have received. I thank everyone who has joined me on this journey once again. I, also, HOPE that you will continue with me along my next journey.

Front

Ann designed these t-shirts on Custom Ink.com, but we would like to get them printed locally.  This is just one design idea for our foundation "kick off" event next Spring/Summer.  Stay tuned....






Back
Back of Shirt



8 comments:

  1. This is absolutely wonderful! You are an inspiration, Bryan! Ann, I love the shirt!! If there is anything at all that I can do to help you, I'm in!!

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  2. I love your idea for the foundation!! I know Matt and I will be on board with helping do whatever we can!! I absolutely love the shirts and can't wait to have one!! Praying for another good day t/m!! Love to you all!!

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  3. Give God the Glory! I want to be a part too.
    My neighbor does shirts and hats also. Another friend also embroiders them. Ann my remember some of the lab Jackets and Ms Gee's

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  4. Love the idea of starting a foundation. Would love to help in anyway that I can.

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  5. I want to thank everyone in advance. The amount of people who have already stepped up and offered to help has been quite shocking. That is the great thing about where I live; People are so caring and giving. I know that there is no possible way that we will not be able to have a huge impact, not only in our community, but also across this nation. Thank and I know when I return home I will begin compiling a list of peoples names and the areas of the foundation that they would be willing to contribute.

    Thank you all again for the continued support now and in the future.

    -Bryan

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  6. the system will probably go down when you get my message. I am so proud of both of you for going through this and thankful that prayers were answered. I amazed at your progress and brought to tears as I read your blogs when I get a chance to go to the library or at Mimi's. I will support you in whatever way I can. It will be so helpful to many to encourage them to be strong and go for treatments. Things are well in Perry Cty. Ol Grandma is holding down the fort. Girls are awesome and so responsible. I'm glad I am able to help in some small way. You are always in my heart, thoughts and prayers. Tell Dr. Burt and everyone there who has impacted my family in some way thank you from the bottom of my heart and may God continue to bless their efforts. Love, Mom (Judy)

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  7. The shirts are awesome!! As I said before, I will help out in any way, shape, or form that I can...Have already thought of a few things that may help with raising funds for your foundation...Can't think of a better way to "Pay Forward" than to help you guys continue to fight this battle!!

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  8. This is beautiful! Thank you so much for going the extra mile (and then some...)!! May God bless your efforts and may many, many people be helped through you!
    Laura H...

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