THE COST OF BEING A HERO

7/19/15 - JP update

Rachel Perez took the time to send me this update tonight about JP and the trip to Shands last Tues.  Please really take the time to let this (her words) sink in deep!  "This disease is chronic and incurable, it is progressive".  My heart is so broken between what I saw with Shakey last weekend and now this with JP, 2 brother's with NO CURES in sight.  I ask that everyone who reads this to please SHARE THIS BLOG - We need to make as much noise as we can about what is happening here.  We need help and we need it soon.  No more turning our heads and wishing these away anymore.  I need sponsors so I can keep the funds going to these people each month...Tomorrow is day 100 in the journey of Squatting for Shakey and JP....It is just the beginning.  PLEASE REACH OUT TO THESE families PLEASE reach out to me.................Below is JP's newest partner in crime "The ZIPPSTER"..and Rachel's update below that.  More tomorrow my friends....Peace and God's Blessings - Bull

ZIP & JP
Shands was not a very eventful experience. The neurologist of course completed a very thorough exam and asked lots of questions. He still needs to review lots of John's medical records over the past 3 years. And of course he wants to do more tests. JP goes back to see him in October unless an earlier apt for the test he needs opens up sooner. Of course this Dr. has access to the latest evidence and testing available, but it takes time. This disease is chronic and incurable. It is progressive, and it seems like progression has happened fairly quickly these last 3 months, ever since the chemo.

In the meantime, JP is just trying to get through each day. Going to the mailbox equals a workout. Playing with Zip for 10 minutes takes all of his energy. 

Please keep the prayers coming and donate if you can. Time trades are over at the end of July, and then the long, legally complicated road to disability starts. Much love and appreciation to Bull and everyone else who cares for us and is helping us, in whatever capacity you are able. JP gets lonely when I'm working, and texts/phone calls are great (just know that it may take a while for him to answer, especially if he's having a bad day). Please arrange visitation through me or JP, since he is not always up for visitors.

Take care and appreciate life. Be grateful for your health. We are beyond grateful for our friends and family, and the community that is there for us during this time. 

Rachel & JP

Thank you Rachel again for sharing.  We love you both.  Bull