Monday, September 7, 2015

Gratitude and Looking Forward

We have had a tremendous amount of support flooding in from so many friends, family, and strangers. Thank you all so much for everything. We are so grateful for everything you are doing for us during this difficult time. Social media says it all, although I know we have even more praying and lifting us up. Our fund page has had over 700 shares and my last blog alone had over 700 views - incredible and insane. Thank you!

And now an update: We spent the end of last week planning the next move. Jon's mom was here and she offered support and kept us company, which helped cheer us up. The clinical trial coordinators in Nashville have been very welcoming to us and we've scheduled an appointment with them rather quickly. The doctors there want to see Jon and Emory got his records there at a fast pace, therefore we tentatively have an appointment scheduled in Nashville for next Monday - one week from today. Our chemo was scheduled for last week, but we decided to forego that so as to start the clinical trial drug sooner. If all goes as planned, we will get to Nashville next Monday, he will be evaluated and approved for the drug, and then get his first dose.

So, what do we need?

Donations are so helpful - thank you to everyone. The money will help us with travel, food, housing and paying for office visits in Nashville, which his insurance won't cover. We can and will apply for additional help, but who knows. The great thing is they are willing to see us and work out the payment thing. Donations are so incredibly appreciated and helpful. Thank you all so much!!! Every amount helps us.


Next, pray that Jon remains asymptomatic - meaning that he continues to experience no symptoms from the cancer for the next week. Symptoms, which include seizures, speech and mobility issues, etc, could hinder us in getting to Nashville... so we need to pray hard that he remains feeling as good as he does now. Join me in praying for this vigilantly. Right now, he is up and about and feeling great! We spent the weekend writing, watching movies, going out with his mom, eating good food and having a lovely Sunday brunch with our friends Jen and James. As of this moment, just by looking at Jon - you'd have no idea all this is going on.

Finally, we need to pray all goes well in Nashville and that he gets the drug and that it WORKS fast in the brain in shrinking the tumors - especially the one on his brain stem. His lungs and chest look great - so we are hoping this clinical trial drug works fast in the brain and keeps everything else stable for a long time. Looking to the future, there are good things in the pipeline for individuals with this type of cancer. This includes targeted therapies, immunotherapies, and combination drugs... so we just need to take down this one spot, keep it and all others stable, and keep living our life to the fullest.

Thank you all for everything. This is an optimistic post and I am feeling better... things are looking up... y'all know I'm always honest... but it's not always easy to be positive. Some days and moments are really hard and so incredibly lonely, especially as I find myself dealing with other unrelated family issues that weigh me down, but I can feel your love and support. I really need it and appreciate everyone for surrounding us with love. Please pray we can have an uneventful week, stay positive, cuddle often, go for long walks with Harper, and get some writing done on our screenplays. That would make for a great week and make us very happy.

I will keep you posted with pictures and more from Nashville.

Thank you!!!


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