We are home.

Back from the PICU as of about 4. It's great to be home, but weird too. This is the first time they have sent us home and said, "medically there is nothing else we can do." So, we are home with Ava. She is not feeling bad. Just sleepy on and off. She nods a lot and gives thumbs up for approval. She is not concerned right now as far as I can tell.

It's nuts. 10 weeks ago Ava was running around playing with her cousins. Right now, she is 3 brain surgeries in and has been given very little time left by the medical professionals. It's very clear to us that we need miraculous healing. We've needed it all along. The biggest difference is I thought this part would come in 18 months, not 2. We are wrestling through it as any parent would. We wonder what in the world God is doing. We wonder what in the world we could have done different. We wonder what in the world. All we know is that God is big and mighty. There is nothing He cannot do. The tough part of that is there are some things He won't do this side of heaven. We just keep praying that healing Ava is not one of them.

Our family is around us all the time and has been wonderful through this confusing and eternally quick time. We have some of the therapy items that we were headed to New Jersey for in route already. Her therapy at home starts tomorrow. We hope to get her well enough to travel, but right now we really aren't close.

Keep praying for Ava. Keep praying for us. I am not ashamed to ask...we need your prayers.

Early blog.

It's before midnight. An early blog as I sit in PICU and watch over Ava as she rests. Lisa is out for a minute getting a much needed couple minutes out of the room after being with Ava constantly today. We are still looking for ways to get the treatment for Ava that we hope will work, but the docs have painted a very grim picture. We won't lose hope, but would be foolish to pretend things aren't dire. She is not in much pain, so that is good. She has occasional leg cramps, but the shunt surgery yesterday relieved the pressure in her head. She nods yes and no, but is only talking if she wants Lisa or is hurting from the cramps. Usually one word at a time.

We won't give up hope. We don't need anymore of a miracle than we did 8 weeks ago. God is still God. We are praying He wants her here.

We are here for the night and praying for Ava. Please pray for her too.

Again?

Welp, we are back in the old PICU. Feels way too much like home. We know most of the staff by name and are strangely acquainted with the layout of the place. After a couple days of headaches, we decided that maybe we should just check and see if Ava's shunt was functioning properly...well, it wasn't. That meant surgery #3.

The surgery was to reposition the shunt installed in surgery #2 so that the fluid in her brain would flow better. It was an hour long procedure and she did well through it. We are in recovery now and are expecting to go home again tomorrow.

Please pray for wisdom in the days ahead. How we get her to New Jersey is the newest challenge. We have options, we just want to choose what is best for her. We don't know much about the days ahead, but we know God owns them. Pray that we will just stay in the moment and do what is best for Ava.

Another crazy day. I am hoping for some boring ones soon.

Saturday.

Some days you just don't have it. Today, I didn't. Ava is fine, but struggling a bit with crampy legs and not talking much. Just nodding a lot and giving one word answers. I want her to talk. I want her to run around and do stuff...but, she isn't there right now. I am fairly certain it's harder on me than it is her. As long as she isn't hurting, she's pretty content just sleeping and watching goofy cartoons all day.

It is interesting to me that God seems to allow Lisa and I to go back and forth. When I'm up, she may not be. When I'm down, she is up. It's nice to listen to her and be reminded that God is completely in control. You see, I am by nature a controller. Not neurotic, but I like to have plans to back up my plans that back up my plans. Lisa is not. She is intuitive and free flowing. She goes where God leads instead of being dragged around like I have to. I am blessed for sure to have her for my wife.

Here are the specific prayers for today.

Pray that God would heal Ava this side of heaven.
Pray that Ava would not have any more cramps or pains.
Pray that Lisa and I would continue to trust that God has Ava right where He want her.
Pray that Noah would continue to process this better than any 12 year old could.

We covet your prayers and thank you for them. I am also praying for a better day tomorrow.

I am going to sleep soon. Maybe I'm just tired.

A few thoughts tonight:

I have been asked a few questions that come up frequently by those of you who read my blog. I thought I would take a bit of time and answer them so you can know what's up. I appreciate all of the prayer and thought that you all put into our lives and want to give you as much as makes sense so that you know what to pray for. So, here it is...in atypical blog fashion:

Q: Josh, you know it's ok if you don't blog everyday right? I mean isn't it draining to have another thing on your plate?
A: Actually, it's nice that you are concerned for me, and I really mean that, but blogging is mostly for me. It allows me to revisit the things I know as truth and write them down. That's comforting in days of complete uncertainty regarding Ava. It's also the best way I know to get a concise message to so many faithful people who are praying. I love knowing that people read this so they know how to pray. Honestly, I look forward to blogging every single day.

Q: Josh, have you checked into flying Ava up north or flying her doc here?
A: Yes, we have looked at both. The variations in air pressure combined with the inability to get to a hospital quickly from 30,000 feet is enough to convince Lisa and me that a leisurely drive over two days in a very roomy vehicle is the best way for Ava to go. Also, this doc lives in NJ and has all of her gear for treatment there, so flying her here would not only be impractical for her, but it would not allow Ava the same level of treatment.

Q: Josh, have you looked into....?
A: Yes. We have spent two months researching every single thing known to man to fight GBM. This is our absolute best option. You all have helped us in reaching this point and we are forever grateful.

Q: Josh, how do you stay so positive?
A: Go back and read some of my blogs from the end of June. I have many days where I can't hold it together. By the end of the day when it's time for me to process it all, I am reminded that God is the only source of comfort, peace and restoration that we have. It's not hard to recognize when there is nothing standing between you and Him.

Q: Josh, are your mom and dad ok?
A: I know they hurt for us and for Ava. I also know they raised me to know a God who is omniscient. They fall to their knees for Ava every single day and pray there is some way God will heal her this side of heaven. However, their faith cannot be shaken by what they don't understand. A God they can understand is a God that is not big enough to handle what we are going through. Mom and Pops are in it with us and fighting through...they are as fine as they can be, but count on your prayers just like Lisa and I. (this also goes for Lisa's mom, Pats)

Q: Josh, is there anything we can do besides pray?
A: Some of you, yes. If there is I am not hesitant to ask. I am not too proud to ask for help when it will benefit my family. For most of you though, we need your prayers more than anything else you can offer. If you wonder if we need it, you can always ask me. I'll tell you straight up if it will help or not...but don't be offended if it won't.

Q: Josh, did you read that one comment I left on your blog in July?
A: Yes, but I can't recall them all off the top of my head. So please forgive me if I have forgotten which one to attribute to you. We read every one and are encouraged daily by your thoughts. Please keep them coming. We feed off of your encouragement in this daily battle.

Q: Josh, do you have any idea how many people read your blog everyday?
A: Uh huh. There are between 6 and 11 thousand people that read this each day from all corners of the world. Lest you think I would think I am some big deal because of those numbers, you should know that there were 50 a day before Ava got sick. My girl has some for real fans and prayer warriors out there.

Ok, that's all of them for now. There are a few others, but those are the major ones that I get several times per week.

You all are incredible and we are blessed to be a part of your extended family. Thanks for praying. Please don't stop.

A special thank you to all of you who participated in the facebook 24 hour prayer vigil for Ava that ends in 90 minutes. What a gift you gave us today.

Oh, and Ava is doing fine. She just spent the day sleeping and watching movies with her Grandmas.

A bit better today.

I think Ava had a fairly decent day today. Her body is certainly still reeling from the toll it took over the last week. From the headaches and seizures and corresponding surgery, she is not physically where she was 2 weeks ago. Her left side is a bit weaker, her eyes do not quite track like they did, and her speech is a bit slower. However, her little crooked smile and her sense of humor have gone no where. They were evident again this evening as she asked me to sing more songs about "Daffney's mee-bum" which translated into plain english is "a song about our dog's behind". She got a good chuckle out of herself. It's nice when you can crack yourself up...you never get bored.

While we don't know what her ultimate physical progress will be, we are staying focused on listening to the doc in NJ who has helped two other girls with GBM. She is in contact with Lisa on a daily basis and is directing Ava's diet and treatment program from there right now. We are waiting on the all go for travel from her. She is helping us decide when Ava is physically well enough to make the trip without further hurting her body in the process. Meanwhile, there are things we are doing here to help keep the beast "in check". All of it is being directed from the only person who has given us any hope for Ava and actually has a track record to back it up. So, we wait and enjoy our times like today as we watch her make baby steps of physical progress.

Amazingly, Ava is not frustrated by her inability to do other things right now. She is a bit more concerned than she was that she is not well, but even those moments are fleeting. She is looking forward to meeting one of the girls who had the same boo-boo she has. She lives in New Jersey where they (Lisa, Ava and a couple of friends) will be traveling.

While it's hard to see Ava have reduced capability, it is quickly countered by the blessing that we had another day with her. Each one is a treasure. I am constantly reminded that I have to value time with not just her, but all of those whom God has put in my circle of care.

I was talking with my brother the other day and told him, "You know, I can honestly say that no matter what happens, I will not have regretted one single thing about the way we have raised Ava. She knows she is loved, knows God loves her, has always had to live within the boundaries of thinking about others above herself, lived everyday knowing that her mom and dad think the world of her because God gave her to us, and knows her dad and mom love each other and Jesus." I know not every parent can give that gift. It's something I wish I could pass on to every single person that has a kid.

The single greatest gift we can give our children is a knowledge of who Jesus is. The second greatest gift we can give is a mom and dad who live out a love for each other that models the way Christ loves us. Lisa and I are by no means flawless, but those are the goals we intentionally shoot for every single day. It has made a difference in the lives of our kids. They have a confidence that only comes from seeing that lived out over time.

We are quite the far from perfect. But, when I go to bed at night, I know that our kids have seen what it's like to try hard to live and love as Christ would. I truly believe it's something that gives Ava comfort right now. She knows we aren't going anywhere. We are right here no matter what. And so is Jesus.

Long Day for the little one.

Ava hit the neuro-surgeons office at 9:30 and went straight through to MRI before getting home about 3:00. That's a full work day for a 5 year old. Heck, that's a full work day for most of America. She was tired tonight. She was responsive and talked in "1/2 voice", but you could tell she was just flat whooped.

We won't know the results of the full MRI until tomorrow, but we got a snapshot 4 days ago, so we aren't expecting anything different. It sure would be awesome if God somehow took the tumor out of there in the last few days, but we are planning to keep the path ahead regardless. However, you can keep praying that the tumor will just flat out go away. We are.

Now that she is medically cleared to travel we just need to get her a little bit stronger before the journey. We don't want to put more stress on her already weak body, so we are praying she gets feeling better in the next couple of days. You can pray that with us if you wouldn't mind.

Hunter Vision's open house was tonight and we had somewhere between 100 and 150 people come through at best guess. It was awesome and I got to talk to a bunch of you. I can't tell you how grateful I am that you are behind us and cheering us on...both with Ava and Hunter Vision. Our family is incredibly blessed to have such a wide support system. You were all so encouraging tonight. Thank you.

Tomorrow is another day. Pray for Ava, that she would be stronger. Pray for Lisa that her focus and energy would be beyond what she needs. Pray for Noah that he would continue to walk through this becoming the man God wants him to be...and pray for me that I would be what I need to be for my family and my work during this time, especially.

Your prayers are worth more than you know. We are living on them right now. The capacity we have to deal with this tragedy is because of God's extra measure of grace for us. I choose to believe that it is in large part due to your faithfulness in holding us up.

Thank you. G'night.

Cleared to go

It's a matter of coordinating the date and making sure Ava feels well enough to travel, but the docs are good with her heading north. She is very tired today. She had the doc appt and an MRI to show the NJ doc exactly where we stand. Keep praying. It was a positive step today. I'll chat more later.

Songs about Butts.

I spent the better part of an hour tonight making up songs to sing to Ava. Inevitably, because I never really left middle school, they end up being about the human posterior. She thinks they are hilarious and always has. She laughed and smiled her little crooked smile every time I would say anything that meant ponderosa. See, within 3 lines I have already used 3 names for behind (4).

It was a wonderful hour. Noah was laughing, Lisa was chuckling from the kitchen...and Ava was pretending she didn't want to hear anymore while asking me if I knew any other ones. What a great night I had just hanging out with the fam. None of us are promised tomorrow, so enjoying the minutes we have is a way to bless each other today. I was blessed tonight.

Tomorrow is the docs visit at 9:30 to be cleared to travel. Pray it all goes smoothly. I'll update all of the Ava prayer team on here after the appointment. I won't wait until evening to post.

All in all, a good day. I worked, Ava slept, Lisa got to be home, and Noah loved school and football practice. He is really proud of all of his new bruises. I told him that chicks love bruises.

Thanks for your continued prayers. Pray for an uneventful night, clear sailing at the docs office, and the prep for the trip for Ava. Also pray that she continues to gain strength over these next few days. That is a crucial ingredient to make the trip.

All for today. A much better one! I mean what day isn't when you can sing about hineys (5)?

Hunter Vision Open House

As you know (at this point), when we found out about Ava's diagnosis in June, my brother and I were 1 month out from opening Hunter Vision. [By the way, she is tired, but ok today.]

That month has come and gone and we have been open and operating for a month. Hunter Vision is a refractive surgery practice focused on helping our patients see the world better. Many have already come through here and now see the world with more precision than ever. We specialize in SBK (thin flap LASIK) and Natural Lens Replacement. So no matter what your vision problem is, whether you are tired of your reading glasses or you can't see things far away...we can usually fix it. Go to the website if you really want to know what sets Hunter Vision apart from everywhere else in the country.

I had SBK done by Dr. Hunter and it is incredible. My world is different without contacts.

Come and see us and tell your friends. Here is the official invite. Consider yourself on the invite list :)


Oh, and I'll of course update on Ava later tonight...

We're home

That's good stuff. It's nice to be home. However, I'm a bit on edge. Ava had her first little headache tonight, since the shunt. Of course it was after we got home and there is no one around to ask about it... She fell back asleep, but it shook Lisa and I a little bit.

We continue to ask for your prayers. We are praying big and understanding where we are right now, too. We need one amazing miracle. Pray Ava gets well enough to take the next step.

We have a doc appointment Wednesday to clear her for travel. Pray she is healthy enough. That is priority one.

Short one tonight. I am going to attempt some rest.

Going home tomorrow?

I think we are headed home tomorrow. Ava has made good progress from the surgery and, while tired, is generally feeling better. I am grateful for being able to leave and cautious about the days ahead. It is like each day is its own maze as we weave through fear, confidence, stress and relief only to wake up the next day and start at the beginning again. I have no doubt that God is who He says He is, but I sometimes wonder if I am who he needs me to be.

I give Him my little girl each day and so far He gives her back to me. But, like Abraham before me I wonder if I'll have to have to follow through on my gift. I didn't prepare for this journey, but somehow God continues to give Lisa and I what we need to make it through. The journey is rough and fraught with peril and fear, but God doesn't let go of my hand. I feel Him with me everyday. I know He has Ava. I just want Him to have her here with me, too.

Pray for us. The weeks ahead are sure to be taxing. Lots of unknown. But, truth be told, no more than ever. I am just more aware. I am more aware that God controls the fate of us all, and that includes Ava.

I will rest tonight, worn out from the last few days...but I need strength to make it through this journey that in its best case has no end in sight.

We are grateful to have all of you walk with us. Lisa and I read every note that comes in. We draw a lot of strength from your prayers and encouragement.

Keep it up. I'm tired so I need you to not be.

Thank you, friends.

Day 3

Little bit better today. Ava woke up early this morning announcing her need to go to the bathroom. That was great for us to hear. It was the first thing she has said in 2 days. Ava talked a bit and had her eyes open for quite a while today. She was comfortable for the most part and loved when the music therapy girl came in to sing to her. The girl that does the music therapy is an incredibly gifted artist. We all loved the mini concert.

We may or may not get out of here tomorrow. We are not in a great hurry, but will leave when we are confident we won't be right back here in 2 days if we go home. The docs are just monitoring her progress right now. They were mostly pleased about her jump from yesterday to today. Our goal remains the same. We are just trying to get her healthy enough to get outta here and get to the next step. We'll move as quickly as we can, but no quicker.

Lisa and I are doing well. Noah is having a good time with his cousins and is doing just fine, too. Thanks for holding our family up in prayer. These next few months will require more strength and faith than we have, but not more than God will give. We know this... we are living it everyday.

Keep praying for Ava. Pray she will get well enough to get to the next step. Baby steps.

PICU day 2

Slow day today. There is a strange comfort in the hospital that I don't have at home. Ava is monitored up, down and sideways and there are people here to care for her every need. It makes it a little easier to sleep knowing that someone will tell me if something happens.

Ava has spent almost all day sleeping. She is responsive, but not staying awake really at all. The breathing tube was removed at about 2pm, so at least that is not there to bother her anymore. She is quietly talking if she is bothered enough to say, "I want mommy". It's been a pretty rough day. You don't have to be very smart to figure out that the staff here is now transitioned to "let's make her comfortable" instead of "let's get her well". They have all been so kind to us, but I know where they believe we are in the process.

I read the tumor reports tonight. It's big again. It's time that God step in and take it away. I have prayed it a million times today. I know God can do it. I only question whether or not He will. His plans are not always our plan, but I know enough to want to be a part of His plan, not mine. Ava is His and I have believed it all along. I still believe it. I want her here with us more than anything, but have no idea where God needs her. I can only pray it is here.

She is peaceful and in no pain. That is good. We are trying to get her well enough to get her out of here and to New Jersey to see this doc that has done great things for 2 girls with the same tumor that Ava has. She believes that she can help us, so we are going with that hope. We will continue to fight. This is no time to be tired.

I am at peace tonight, once again knowing that our big God is loving our little girl as she rests. I am praying he will heal her. I know He will. I just want it to be my way.

Please keep praying for Ava. She is a trooper and continues to battle. I'll keep you posted. We are praying for a great day tomorrow that she will be more awake and enjoying not having headaches. Thanks again for being part of her team. Lisa and I are so grateful.

What a day.

Well, Ava had started feeling bad a few days ago as you know. This morning she began acting really abnormal and having (what we found out later was) small seizures. We brought her into the ER and she was immediately raced to MRI where they discovered that her ICP (intra-cranial pressure) was dangerously high. She was operated on within 20 minutes of hitting the front door. They put in a shunt to relieve the pressure.

The not good news was this... her tumor has grown and was blocking the flow of brain fluid which was the reason for the increased pressure. The docs are not hopeful at this point and have pledged their cooperation for anything we need from here forward. They do not expect Ava to make it 3 more months. While that news is terrible, we are still praying for a miracle. God is as capable now as he was when the tumor was smaller.

We are taking the next steps. Lisa and a friend will be taking Ava to a doctor this week (up north) who has had good success in treating GBM in kids. We just have to get her well enough to get there. The docs here expect that she will feel really great in the next few days because the pressure that has been building has been relieved. If she feels great, it will be a great trip.

Pray that the new therapy works. It really is the best effort that we can make. Lisa and I covet your prayers after yet, another rough day. We are hanging in there.

I do ask that any of you that live here don't visit the hospital. We love you, but there is a lot of chaos already. Just pray. We need it.

Hmmm.

Well, we spent about 5 hours today in the ER. That wasn't fun, but they told us this... they aren't sure what's up with Ava (I am guessing that was a fairly expensive diagnosis). They gave her some fluids since she couldn't keep anything down for the last 48 hours and then said that her blood levels looked good and the neurosurgeon's office said it's likely too soon for it to be something that is related to tumor...so, we are back home and she is just sleeping all the time. She says she feels fine, just tired. So, I guess we will just relax and wait for her to sleep enough. She has kept down some light stuff for the last few hours. That's good.

Lis and I have been pretty good all day. We know it's a long process and we are in for good, so we are just walking through it day by day. Keep praying that she will feel completely well and that her body will heal itself as quickly as possible. Pray for my awesome wife that she will have what she needs to keep going as she takes care of Ava most all day, everyday. She would have it no other way, but it takes it's toll for sure. She's remarkable. Really.

That's all for today. Looking for a good night's sleep for Ava and Lisa. I'm guessing I'll sleep just fine...

Headaches suck.

I had one last night and so did Ava. Luckily, Lisa didn't have one. Ava is feeling bad now. She's not keeping much food or water down, so it looks like we may be making a run to get her some IV fluids later this morning. She keeps going back and forth between headaches and vomiting. It's not fun at all. Pray that she will get back to feeling better today.

Some thoughts.

Well, after my rant about blogging everyday because it helps me... I went and played cards with my brothers and friends last night instead of blog. But, that was fun and light-hearted, so it helped just the same. Ava hasn't had a great day. She's been tired all day, had a couple major headaches and generally been kinda sore all over. No fun at all. After a normal day yesterday, we were hoping for some more normal.

It's almost surreal to watch this all unfolding. "Cancer", people helping us, Ava feeling sick, the thought of how serious it is all the time, family coming in to town to see her, a phone call from home makes that me nervous every time I see the number...it's so bizarre. It's like I'm living in some other world for a while. Normal isn't normal. Normal is weird.

God is doing something and I don't know what. I do know he is building compassion in me that was not there before. I feel for every person going through trial in a way that I never did. I appreciate every gift in a way that eluded me for one reason or another prior to this. I value each day as if it were special. I see my wife in a light that I've never been able to see her. I live every day with emotion just below the surface. None of that was there before June 26th and none of it will leave until I'm not on this side of heaven.

I know I've told you before, but I can't tell you enough times how wonderful it has been to have all of you connected to us through this time. It's a long road with seemingly no end and it makes it palatable to have friends and family by our side. Please keep praying. We need it.

Pray for this:

1. The cancer to be gone completely.
2. Ava to feel well as her body rids itself of this piece of crap (and use the word crap for me...God can handle it)
3. Lisa's strength and wisdom. (What an unbelievable woman)
4. My focus to do what I have to to provide for and lead our family.
5. For Noah, that he would grow into the man that God wants him to be because of this.

All for today.

Oh, nothing much.

Ava hasn't felt good all day. It's ok though. It's not symptoms that are typical of things we are concerned about right now. So, while it's not fun to see her feeling really tired and nauseated, it's not headaches...so that is good for now. Hopefully she just needed to sleep a lot. She fell asleep at 5:30 pm and is still sleeping and it's now 11. Looks like she will get some serious rest tonight.

Week 2 is in the books for Hunter Vision. It's been a great two weeks and the minor tweaks to the patient flow system are near worked out. We do our darnedest to make sure no one ever waits for 10 minutes or more, but we had a couple that were almost 20 this week. Dang. Well, next week we are back at it to make sure that doesn't happen. We hate waiting at the docs office as much as you do, so you can rest assured we will fight that battle until we win. We are militant about wait times.

All is going along. Not much to report. That's good.

Oh, and just so you know...I write this everyday because it helps me. If you ever want to check out for a while feel free :) I'll be here!

Thanks for praying. Keep it up!

Date with the lady.

Lisa and I got out for a bit tonight to watch a movie and sit in a drive thru line at McDonalds for 25 minutes. All in all, a great date even if my Mcflurry was melted by the time I actually got it. The kids hung with mom and pop, so they had more fun than if we were home. I was a little iffy about leaving Ava tonight (just because I was in a bit of a funk) until she said, "Dad, I'm glad you are taking mom on a date...you haven't been on a date in like 2 months!"

Well, that was all I needed to hear. It was great to spend some time with the woman who is holding it all together right now. I already knew it, but I was once again reminded of her amazingness. Yes, it's a word and it's definition is Lisa.

Everyone is hanging in there in the Hunter home. Thanks for your continued prayers for Ava, our family and Hunter Vision. Keep praying!

Better day.

Ok. No headaches last night. That's good. Praying tonight is another uneventful one. It's weird how much "normal" is what I look forward to. I spent much of my time before hoping for the magnificent and now I am so pleased with a simple "uneventful" day. I'm not sure what to make of that.

I have been working a bunch this week (as has all of the Hunter Vision staff). That is good. It means a bunch of people are coming to see us and being blown away by the Hunter Vision Analysis. There are a good number seeing Dr. Hunter to correct their vision. It's an incredibly rewarding job. Dr. Joel is an unreal surgeon. Tomorrow is another surgery day where more people will get out of glasses and contacts forever (including reading glasses). It's awesome.

Ava felt good today. Not awesome, but good. I am grateful for each one of these days. Thanks so much for praying for her.

Noah is loving school and so glad to be back in a normal routine after the screwiest month of his young life. I am grateful for that for him.

I have much hope for the days ahead. Please keep us in your prayers. We need every one of them.

Blah.

Today was not fun. Ava woke up with headaches last night and it scares the crap out of Lisa and I every time. She was pretty good today for most of the day, but then had a slight headache as she went to bed tonight. I just want her to not hurt. That's all. My goals are small right now. I need to be reminded of how big God is because this stupid tumor feels big right now.

Lisa and I covet your prayers. Pray for no headaches. Pray for the tumor to be completely gone. Pray that Lisa and I will stay positive and strong. Pray that Ava lives healthy until she is 85 or Jesus comes back (which ever one comes first is fine by me).

That is what I pray.

Thanks for hanging in there with us on the long road. It's only been 6 weeks and today it feels like 6 years.

On a bright note...Noah had a great first day at school and got his first email address as a step toward becoming a teenager...he was ready to sign up for it the second I walked in the door from work. He had a great day. So, I should not be too quick to discount what God is doing outside of Ava's world. He is still here and still taking care of us.

I just think today that Noah was the only one who could see it.

Nothing to report...

Just how we like it around here. A nice calm day with no big things happening.

Noah starts school tomorrow. Ava will be getting her kindergarten going at home with Lisa and will hopefully join the regular class later in the year. For now though, she is actually excited about all of the fun places she can go to learn with her mom as her teacher and a few special guests as substitutes!

Pray that the first day of school goes well for Noah. There is no doubt in my mind that he will have 1 million people ask him how his sister is doing. I hope a couple ask how he is doing.

God has our whole family right where He needs us. I know that.

Princess and the Frog

Ava got a call today. On the other end of the phone was the voice of Raymond, the cajun firefly from Disney's "The Princess and the Frog". She was elated. A friend of Lisa's had it arranged. It was really awesome. It lead her to proclaim that "this was the best day of her life." Hahaha. That made me laugh a lot. He also does the voice of Tigger and Pooh. So, he called them in one at a time and talked to her in those voices as well. Lisa audio recorded it so I could listen. It was really cool.

I am grateful today for all of you who have given something to make her days more fun as she recovers from the junk of the last month. We have incredible friends and family around us and we don't take it for granted for one minute. It is not lost on us that not everyone has the support we do. I am really, truly grateful that God gave us the gift of all of you.

Thanks for being family when we need it most. We are hopeful for the days ahead.

Game Night.

Noah is finishing up mowing the yard. He's 12, so it's his job. He's not a huge fan of having a job, but no one is at 12. I'm proud that he does it anyway. He is a great kid.

We are going to finish the lay around day with a family game night. I'm sure we'll play some Candyland and other games that I will lose, but the kids will love it.

Ava is doing well today and had no headaches today after having them the last 3 days. Thanks for the prayers, that is really awesome. They weren't bad before, but they were enough to be annoying to her and concerning to Lis and I.

Tomorrow starts week 2 at Hunter Vision. Keep praying for Hunter Vision too. It's bizarre to be starting a business under these circumstances, but again, I know that God has us right here for a reason. The Hunter Vision team has been incredibly supportive and all of them have gone above and beyond...especially Katie Romano. She is our Clinic Director and took the brunt of the workload for the last month so that I could be with my family. Lisa and I will never be able to thank her and her husband, Shawn for such an incredible and timely gift.

Lisa just keeps trucking along and being amazing. We'll know more about Ava in a few weeks when we take her to get a "baseline" check up. That will tell us basically where we are starting from. I think it includes an MRI and some basic motor skills checks so that the docs can monitor her progress. I'll keep you in the loop as that comes up.

Thanks again for all of your prayers. They matter.

Wii

Mom and Pop gave us a wii. Ava loves to play it. I played it with her tonight until I couldn't possibly play anymore video games. It's great for her balance and coordination as she heals from surgery. We are exited about the days ahead and the way we believe she will be healed. Her body just needs to be able to fight the booger and kill it. I am praying everyday that it will. I had a great time with her tonight. No work tomorrow, so it's a family day that should be a blast. I'm looking forward to it!

Keep praying!

Good Week

Hunter Vision made it to the end of the week and treated every patient well. We did it. We got to the starting line. Now, here we go...It's time to spread the news that Joel Hunter, MD is a really awesome surgeon. Every patient over the past 7 days that has undergone SBK at Hunter Vision is seeing better than 20/20... Dr. Hunter is good.

Ava has been in a great mood. The only thing that you can pray for right now besides permanent physical healing is her headaches. She gets them randomly and of course, it freaks us out... so just pray she doesn't get them :)

Noah got to visit 2 different theme parks this week... so a great one for him too!

And last... my Lisa hung in there like a champ all week. She is an amazing woman. I mean, for real.

I thank God for a good week. I look forward to many more.

A good day today.

God is watching over us. I felt it today for sure. There was nothing overly significant about today, but I knew He was with me all day. I wasn't worried about Ava. I wasn't worried about Hunter Vision. I wasn't worried about money. I spent all day today knowing that He has all those things in His hands and I don't need to fret about any of them. Some days that is easy to do...other days I write super heavy, sad blogs.

For today, I am content living in the moment. We all played wii bowling tonight as a family. I got smoked, but was glad to be doing something fun together. I made Ava laugh tonight as I told her stories of my good friend, Benjamin Needlebutts. I make up stories around bed time often and have told her of many false adventures. She loves it. Especially if it has the word "butt" in it. It is great to hear her laugh.

All is well in our home today. Lots of big days ahead, but that goes for all of you. Every day matters. Live it as if it were the last.

Today was awesome.

Ava walkin' it out.

I don't think I need to say much today. This says everything I would want to. Keep praying for Ava. She is getting stronger each day :)

Untitled from Josh Hunter on Vimeo.

Missed Yesterday...

But, probably a good thing. I read over my last few updates and they even made me sad...so I can't imagine how they must have sounded to you faithful prayer warriors and readers...

Well, I have been in a much better mindset all day today. Hunter Vision is 2 days old and running like a well-oiled machine and Ava is peppy and having fun all the time. I didn't realize how much it sucked out of me to go to that doc appointment last week. That sucked.

Now, I am back. The hope you all have been praying for is there (for now) and I am feeling good about getting Ava healthy. I know we are statistically in a bad spot, but statistics say Ava should be a perfectly healthy 5 year old...so, that should tell you what I think about that.

Several of you have asked how you can help with finances. I never know what to say. I wonder if someone would like to give me 5 dollars to help defray care costs or if they are offering to buy us a large house to live in. It's likely somewhere in the middle of those two options, but I have no idea what to say. So, I decided I would every so often post how much it has cost us for care that is directly attributed to Ava's GBM. This number won't include new school clothes, but it will include all doc visits, travel, blah, blah, blah...that way if anyone wants to do something they will know a ballpark that they can be in to help. It dawned on me that no one would otherwise know if it has cost us $1000 or $100,000...so I'll put it up here and you can do whatever or nothing. Then I can stay out of the loop of trying to figure out the weirdness of receiving money.

A third party, kind soul set up this account the first week Ava was in the hospital...so anything you want to do can go here: {We won't have any idea who sent what... we just see the total available}

Send a check made payable to the "Ava Hunter Fund" to: Citizens Bank of Florida, Att: Jolene Burns. P.O. Box 620729, Oviedo, FL 32762-0729

Good. Now I can just update and leave the money stuff out of it. And, I can refer people to this particular blog.

As of today (having received no hospital bills yet) we have spent $2,814. There you have it :)

All is well in the Hunter home. We are just doing the normal day to day and working to get Ava well. I'll post some updated video tomorrow so you can see her progress!

Thanks to all and keep praying!

Mixed Emotions

August 1, 10:40 p.m. I just got in from the office and the final run through to make sure it is all ready for tomorrow. I am full of relief and excitement. 6 years ago, Dr. Joel D. Hunter and I decided we would make this journey together. It has been in the planning and development stages for as long as I can remember. Hunter Vision becomes a reality tomorrow. Our first appointment is at 9:00. The day we dreamed about is here.

The way I dreamed about it is not here. That went out the window a month ago. Lisa and I have had a tough couple of days following the appointment with the Oncologist. The world they live in has, in their mind, given our daughter 18 months or less to live. We wrestle with it everyday. From hour to hour we feel great about what God will do then terrible about what He may choose. These moments of significant life milestones seem to magnify the thought of life without her. This wasn't my plan. She is supposed to benefit from this business venture. She is supposed to not have to worry because I worked hard to make her life better. But, she is now fighting for her life. I don't get it. Really, I don't.

I am glad I can trust God. I don't know how I would deal with this if I didn't fully believe that He has her right in the palm of his hand. He loves her more than I do. I don't know how that is possible.

Tonight I am having trouble living for today. The future of Hunter Vision has for so long been a part of all my thought and now it is here. Its presence is pushing me to thoughts of the battle of and for our future. I go to bed tonight praying for Ava. I am also praying for me. I need strength and wisdom beyond anything I have. I need God to show up big.

I want hope. That's what I pray for tonight. For Ava and for our family. It was a heavy day. In every way.