Bits of Stuff...

Ava is good today. Happy, sad, mad, laughing...normal day for a 5 year old girl.

We talked to a mom of a girl who had exactly what Ava has last night. Her daughter is 3 years past this diagnosis and has no sign of a tumor as of this day. What an encouragement it was! So, a special thank you today goes out to our new friend, Renee.

I worked a full day at Hunter Vision. That was awesome. I likely was about 25% as productive as normal, but it was good to be there.

Lisa is getting everything all squared away from our big move back home from the hospital.

Here are the prayer requests for tonight:
1. Pray that the tumor shrinks to nothing and that Ava will be completely healed.
2. Pray for sustained energy for Lisa as she works hard to care for Ava at home.
3. Pray for the doc follow up appointment on Friday and that we will make wise decisions regarding Ava's care going forward.
4. Pray that Hunter Vision will be great for our patients and that the final details before open will come together.
5. Pray that the new "normal" comes easy and that we adjust as a family.
6. Pray that God takes care of the finances as her ongoing care will be thousands of dollars that we will need to find or earn. (I'm not worried about this one, but I do pray about it because when the rubber meets the road, it's for real).

A couple things to be thankful for:
1. We are home :)
2. Ava is regaining significant strength in her left leg and even moved her left arm on her own today!
3. The support system we have has been incredible.
4. Ava is in no pain whatsoever.

And for all this. We are blessed.

I'll be back tomorrow....

Ava's Home

We reached milestone 1. Ava is well enough from her surgery to be on her own. We packed up the uhaul and left the hospital at about 1pm today. That was great to get out of there. Ava doesn't miss it one bit. That victory was enough to get us to this moment...the real work begins now.

The second part of the mission is to get Ava well and rid of cancer. Honestly, it's hard to even type that. We know the journey ahead is long and arduous. We pray that we will have the strength to lean on God each day and look for only what He wants from us for that day. I'm not very good at that. Fortunately, Lisa is. So, at least I have someone to look up to.

The reality that we are now to the hard part is sinking in. Keep praying for us and praying for Ava. I'll keep you posted...

Another good day...

Untitled from Josh Hunter on Vimeo.

"You know what friends, I'm outta here!"

There has been incredible stuff come in from all of you. Lisa and I thank you so very much. We are very hopeful about the days ahead. We got the news this morning that we will be leaving the hospital tomorrow. Yahoo! Ava is more excited than anyone. She is over this joint. The real work begins now. We have physical therapy and all kinds of other stuff to do.

We officially have enough to work on :) The research team showed up in huge ways and we have literally hundreds of helpful pieces of information from all over the world. We are shutting down the research department and moving on with what we have. The plan begins now. I won't be blogging about the plan in action simply because I don't want to be distracted by input from well meaning friends. Lisa and I are comfortable that God is leading us and we are following the doors He has opened through the help of our research team. That is the ongoing plan!

I can't even begin to describe how incredible it has been to see the outpouring of love and support for our family and our little warrior. Many of you have asked us how Noah is doing. He is doing well. He is fully aware of the challenges ahead and is fired-up about being part of "Team Ava" as we readjust our lives to get her better. He is a great kid and loves his sister. He knows that "Hunters don't quit and Hunter's don't whine". Those two things have been built into him since he was born (just like they were in me)...they will serve him well. He's as ready as any 11 year old can be to join in the battle.

I finally was able to work a semi-full day today at Hunter Vision. That was a wonderful distraction from what has become normal in just a week. We created a facebook page for Hunter Vision and you should go "like" it if you are on Facebook...that will help us get the word out. Hunter Vision has become all the more critical for my family in the last week. Help us get the word out if you can. We open August 2nd. Lest you think I am shamelessly plugging our new adventure in the midst of crisis, you are only correct insomuch as we need it to go well for Ava's ongoing care.

I will continue to blog about progress and thoughts as we move through this journey together. While my family has always been known by many, Lisa and I have always been content to stay in the background loving to watch what God is doing. Through this He has put us in a weird position of a lot of attention. Not exactly the circumstances I would have chosen to be known for, but I know He knows what he is doing and our job is to be faithful. So, we will live this out in a way that will hopefully help others and bring honor to Him who created us and Ava.

I am once again grateful for all of you, covetous of your prayers, and hopeful for the future of our family and little Ava. We need you to keep praying... I'll be asking daily for a long time.

All for now...

A good day...

Ava had another good day. Her body is still weak from the surgery, but her mind is for sure regaining momentum. The drain tube was removed from her head and she pooped today (not at the same time). Ha. Both milestones that make a father proud.

A little light humor makes everything a bit more tolerable these days. On another positive note, we found a story of someone who went through this exact same scenario two years ago with her daughter (who is now 8 and cancer free after being told she wouldn't make it a year). It was a great encouragement and she has kept copious notes of the path they followed. That is pretty awesome. We are going to contact her.

The Onc Doc came in today and said "It may be a few days before we have confirmation of the diagnosis." I said, "No problem, we aren't anxious or worried. It is what it is and we are gonna do what we have to do." He looked perplexed that I wasn't more concerned and then he left the room. What he doesn't know is that I trust God for Ava's health, not whatever plan he and his cohorts put together. God is the healer...the docs just help the body do what God created it to do. I think he forgot that today. All the best docs in the world can't heal a body that isn't supposed to be. They are mere men with an opinion. Granted, they went to school for a million years to form that opinion, but at the end of the day...it's all a best guess.

That's why leaning on God makes most sense. I don't mean sitting idle. I mean trusting Him to lead us on the right path for Ava. I care little who tells me I'm nuts if I am following what God has told me. I don't ever hear an audible voice, but I expect Him to open the doors that need to be open and close the ones that should be closed. My promise is to walk through the open ones with Lisa as we pursue healing for Ava.

Keep praying. Lots of days of work ahead. We are blessed to have had a great one with Ava today.

Pain and Progress

Lisa and I are overwhelmed by all of the prayers and help. We have received over 500 responses from friends with different avenues we can pursue. Amazing... luckily there were a lot of repeats so our task is only to narrow down a hundred or so! Thank you so much. It gives us a place to direct our energies.

We'll be able to confirm the diagnosis in the next few days, but honestly, that is of little concern to me. I know that no matter what the diagnosis, God is going to have to show up in a huge way if little Ava is to be healed completely. No matter what, we know He has her. Days like the last two make things a little easier on the emotions because she feels good. Right now, I can handle a lot more when I know she is not in pain. The next 6 months are important, but not as important as today. We are living day by day, and in many cases, minute by minute.

This morning as a lot of the medical staff gathered in the room to help Ava with different things, she began to use "magic" to turn each of them into different barn animals. They played along and we all laughed for a while. It was a nice few minutes of joy in what has otherwise been some super sucky stuff over the last 6 days. Ava is working hard to get better.

In a blog a while back, I mentioned that her left arm and leg were not working since the surgery. Last night Ava began to have pretty heavy pain in her left leg. The docs and Lisa were up by her head trying to keep her calm while I was down at the foot of the bed. I wasn't paying attention to what they were saying since I was trying to figure out how to help. I realized her left leg was bucking up and down like she was riding a rodeo bull. I kept saying "her leg is moving! her leg is moving!" Everyone else seemed concerned with the pain...but I saw progress.

I am guessing that is what we will be going through for the rest of our lives, cancer or no cancer. It's what we went through long before we ever involved any doctors or the C word. Life is full of pain and progress (it's full of joy too...but I don't know that joy yields the richness of God when there is no pain to compare it to). Progress allows us to tolerate pain that much more.

I am grateful for progress, trying to learn to see God in the pain, and hopeful that I can become who God needs me to be for my family through the days ahead. But, for now I relish the progress of today...even if there was pain involved.

Thanks again to all of you who are praying. Keep it up. We need you.

Baby Steps

Today has been a day of little baby steps. Ava woke up with no headache (likely the first time in months according to the doc). She has been in a chatty and good mood almost all day. She was moved out of ICU to a step down room where the care is much looser and the environment is not so stuffy. It's nicer here.

I have been rejoicing all day in the little progress of her feeling better. It's much easier to think clearly when Ava feels better. We have received literally hundreds of emails from the research team. Thank you to all of you. We have enough info to fill two barns with paper if we print it all out. I am sure something will come out of it all. I am grateful and humbled by the response of all of you. We are on a mission to make her better.

We are awaiting the results from 2nd opinions we sent elsewhere for the pathology report. While we don't expect it to change, we figured there was no reason to not have someone else look at it since it could be nothing but better if it changes! Over the last 24 hours I have read many stories of success in beating this sucker. Ironically, none of them came from chemo and radiation (at least none that didn't return soon after). There are some other roads that we have to pursue and we are optimistic and hopeful no matter what the stats say. Our God is big and He can do whatever He needs to. Ava is His anyhow.

Noah asked me the other day if his sister was going to be ok. I said, "we believe she will." He said, "What do you mean, Dad? Why can't you promise me?" I told him..."I can't promise that you will be ok from here to Grandma's house when you leave the hospital, but I believe you will be." I was reminded by that conversation that God doesn't promise us tomorrow, but He promises that He is faithful. 1 Corinthians 1:9 tells us, "God, who has called you into fellowship with his Son Jesus Christ our Lord, is faithful."

That, I can promise...because he promised me.

It's been a good day of baby steps forward. Ava is feeling pretty good and that means we are too.

Keep praying. We need your prayers more than anything else.

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.