Today.

Lest you think I am always feeling hopeful about what each day will bring, I will start this blog by letting you know that randomly, each day, I lose all composure and fall apart completely for 30 minutes. I am now to the point where I have timed it. That's about how long it takes to realize that my head hurts from crying.

Crisis is an amazing thing. I know we have to walk through it in life, I just always assumed it would be something normal...like I got fired from a job, or my kid got arrested, or...who knows. But, I never thought it would be a battle for the life of my little girl. We are locked in. We know that traditional medicines have proven ineffective on what Ava has. There is about a 1% chance that chemo and radiation would do anything but possibly slow down this crap for a few months...but likely at the expense of Ava's quality of life. We are leaning toward finding other ways to help her. Medicine is wonderful in most cases. It helps most people with most diseases... we aren't in that category right now. We are researching all kinds of things that have proven to beat GBM in children that aren't the traditional route that we know fails. We are listening to everyone for a few days.

That being said, I am going to ask you all for a favor. If you would be an extension of the Hunter research department and look for non-tradtional ways that childhood GBM has been successfully treated and cured and respond to this particular post with what you find, I would be very grateful. While we may not use any of it, it may be that one of you has a connection to our next best step. I am only asking those of you who have the time and feel called to do it to jump in. You have all asked how you can help...this is one way. We are compiling a spreadsheet of responses and methodically working through them one by one...so if you are not convinced it may help, then we likely wouldn't be either. However, if the solution is to dance around Ava and throw sunflower seeds at the TV and that has been proven effective, we are all ears.

On a positive note, today was a pretty good day. Her brain is responding pretty well to the surgery. They told us it would likely be a couple months before her left side responds with any strength, but that is of little importance right now. The good news is that her surgery appears to be healing well. She was the best today that she has been since Sunday before surgery. She is dealing with headaches still, but they are now as a result of the surgery and not because of the swelling that the surgery caused. They tell me that is good. She has been awake most of the day today and is pretty chatty. I had planned to go to work a little today, but couldn't bear to leave the hospital and miss the new-found moments of joy she is bringing...So, I stayed there.

The people close to us have jumped in to help with the launch of Hunter Vision next month and continue to amaze me. They have made it so that I can be at the hospital. The staff at RDV and Hunter Vision are sacrificing for our family. I will never be able to repay them.

We are so blessed to have a huge group of people to hold us up while we battle. It makes it better. We know that in our weakness we can still fight and that the fight has only begun.

As the musician who came to visit Ava came to sing today, I worshiped in the hospital room. She sang, "You give and take away, you give and take away, my heart will choose to say, Lord blessed be your name." We praise God for every minute we have together as family. I am grateful for all of you who commit to praying for Ava. God hears our prayer. We have no choice but to lean in to Him and trust His plan for our life and Ava's.

Keep praying. Please don't stop. We need you and so does Ava.

Love to you all.