HALFWAY DONE!!

JACK
Eating breakfast, cute hat on, and sharing his priceless smile!

So, what about the "other stuff" that's going on?

Jack is doing pretty well. His platelet count dropped fairly drastically at the end of last week, so they ended up giving him a platelet transfusion yesterday.  It was a little surreal and comforting seeing many of the same nurses from when he was getting treatments 4+ years ago... but no shock to any of us, they all remembered Jack.  :)

They of course all told stories about his bravery back then, the jokes he made, and the Grace with which he underwent any obstacle.  Now here he was, doing it all over again.   And although not able to share verbally quite as well as wants to, we all understand the point he's getting across when he flashes that smile, or rolls his eyes, or tries to squeeze Dr. Claire's fingers numb.

His walking & speech have improved slightly, although still not to the point where anyone other than Dr. Claire or those who see him daily would notice.

We are excited that he is halfway done, and are hoping that he continues to improve over the next couple weeks.

Continued thanks for all the love, prayers and support...

We love you all!
april

16 days left and a little cheer!

Hi all,

Check out a few of the shots of Jack counting down!  You may notice that he got a few haircuts over the weekend, and it officially got shaved off on Saturday night.

He is still such a handsome young man!

18 days as of Friday morning....

17 days as of this morning...

We are getting so CLOSE to half way done!!

Also, the team at Sixthman (the company I work for) always closes meetings out with a cheer.  This one was for Jack! Thanks guys.



Hope everyone had a great weekend! More updates coming soon...

XO
April

radiation countdown!

Dear friends and family,

The countdown is on!

We have only 20 radiation treatments left.  We are already 33% done! And Jack is being an awesome sport. (the photo below is Jack posing with his cool countdown flip book Tiff made for him, with contributions from many others!)

So, how are the treatments going?
For those of you who don't know, the radiation treatments are every day, Monday - Friday, at noon.  The team at the Winship Cancer Center at Emory does a great job of getting Jack in and out in less than 20 minutes most days.  Greg, who is the head tech, has an awesome smile and big personality and makes it so much  more comfortable for Jack and us. There is even a little cafe in the center that has delicious tomato soup and grilled cheese, and even Kit Kat's when Jack manages to hum the song for us (which is awesome).

The radiation machine itself is pretty wild to see in person.  It looks like something I have only seen in movies.  In order to keep Jack really still throughout treatment, they put a mask on that covers his face and shoulders.  Kinda looks like some sort of really uncomfortable Halloween costume, but like with most things, Jack does a great job at remaining calm and just laying there while it's done.  If you get a chance to accompany one of us when we take him, we love the company!

Outside of radiation, Jack is doing ok.
I usually hate the word 'ok', because it seems so vague and in the middle. But, for how things are right now, it seems to be the perfect descriptor.

Jack's biggest challenges these days are his walking and speech.  Over the past 2 weeks, Jack has started to depend very heavily on his wheelchair to get from place to place.  When he is patient with himself and stands & takes steps slowly, he does a good job of moving short distances within the house. But for most everything, the wheelchair is our best option.  I have a feeling the biggest adjustment has been for those of us around him, as he seems to enjoy the rides!

The great news is that this has nothing to do with his strength.  He is still the same strong young man he was a month ago.  There is just something not connecting due to the tumor location or the radiation, or a combination of both.

His speech has also gotten a little hard for us to understand, but we are getting creative (and so is Jack!) on ways to help figure out what he's saying.  I think the hardest part about this is his frustration in hearing the question, "what?" from all those around him. But, as you could expect, he takes it like a champ and just lets us imagine whatever it is we think he's saying. :)

Even with these new challenges, we celebrate and thank God that he is rarely in pain. Mary & Dad do a great job of making sure he is always comfortable, and it isn't very often that he has bad headaches or stomach aches.  What a huge relief!

Aside from all of this, we still find time to smile and laugh and be silly with each other.  A large part of that is because of...

YOU!  All of you have been amazing...
We continue to be amazed by everyone who has signed up to bring dinner (thanks to whoever spread the word about healthy desserts!), and those who just stop by to say a quick hello and share hugs, and those who have sent cards & gifts for the boys, and those who help start prayer chains, and those who just let us know they are thinking of us.

We have had some incredible musicians (some of Jack's favorites) send along messages of encouragement.  Ken & Drew, and the entire Sister Hazel band and team are all huge supporters of fighting childhood Cancer.  They have been a part of my life (and thus, Jacks) for more than 8 years, and their music has certainly been a constant in our home for a long time. Thanks guys for sending this along! Enjoy!



I will be posting more videos and photos as time goes on... so keep checking back. Who knows, maybe Jack will want to post his own blog again soon. :)

We love you all!
April

A Note From Bob

Hi everyone,

I wanted to share the attached article with all of you, as I have thought about it countless times over the past few years, and especially recently. From the first time I read it, I felt it was a very accurate and touching summation of who Jack is and what helped him become this way.

Jack has always been one of the sweetest, most genuine people I know. He has always been faithful to God and the spirit of Jesus has always been thoroughly integrated into his being.  It is not something he has had to study about or for, but it is truly in him.

Many who have met Jack have said (even before his first tumor was found) that he was special kid and was placed on this Earth and in our lives for a reason.  He has taught and touched many, old and young, just by his presence and friendship.  Quite often when we go somewhere, somebody will engage Jack, knowing him from a a previous encounter that none of us were aware of, and tell us what a special person he is.

For those who know Jack, this article will only confirm what you know to be true.  For those who have yet to meet him, it will give you some background and insight into one of God's true warriors.

The author of the article, Mike Lee, was Jack's superintendent at Cherokee Christian School and helped our family embrace Jack's challenges early on.  We want to thank Mike again for sharing his thoughts from 2005 that still hold true today.

Have a great day and please continue to pray for guidance that we can make the right decisions during the challenges ahead.

Click here to read the article!

I love you, Jack.
Dad

HOME BOUND!

Hey everyone,

Just a quick update on a few things...

Jack is heading home today - yay!
After all tests related to his gall bladder and liver came back clear, and the oral pain medicine seeming to work well for his headaches and stomach aches, the hospital sent us packing. Hooray for that!  A big thanks again to all the CHOA nurses, docs, techs and of course masters behind the french toast sticks for taking such amazing care of our buddy and helping him get through the past week.

We are excited to spend the weekend at home & hopefully get Jack outside in this beautiful weather for a good dose of Vitamin D.

10% of radiation is DONE! Chemo will wait a couple weeks...
3 out of 30 radiation treatments have been completed and Jack is ready to keep knocking 'em out! The appointments will be at 12:15pm Mon-Friday.

Tiffany put together a 'countdown book' for Jack with different pictures behind each number of his countdown of days till radiation is over (29 through 1).  Thanks to all the friends and family who contributed a number!

As for chemo, Dr. Claire is wanting to wait a couple weeks before starting to ensure that Jack's blood counts stay high enough to continue both treatments.  More on that when we hear.

Some fun stuff...
Here is a link to the first video of our cousin Jason and Tiff's great friend Christie singing the other day in the hospital room. Magical. We will get the others posted soon!

http://www.youtube.com/watch?v=cmZ8b-uNx_0&feature=player_embedded#!

Love you all,
XO
april

short update/ tomorrow/ AWESOME visitors today!

Dearest friends & family...

Although today started off a little rough, it got better and better as visitors stopped by, showering Jack with love and support.

For the 2nd day in a row, Jack had to wait until around lunchtime to finally eat his first meal of the day (because of the CT scan on his liver)... and we all know that's one of the worst things for him to endure.  Mary, Tiffany and I all promised that we wouldn't eat a thing until he was able to, out of fairness, (although we did cheat and have coffee), and needless to say, he wasn't the only one ready for chicken fingers when he got back up to the room...

We are all so relieved that Jack will be able to eat tonight and tomorrow, at whatever time he becomes hungry.  Praise the Lord for that!

Great news - the results of the CT scan were clear.  However, Jack was still having major pain in his stomach, so they are continuing to run labs to try and figure out what's going on.  They did pick up on the Ultrasound that he has gallstones, so those passing through his system could be the root of the pain.  We hope to know more tomorrow.

Overall, Jack is doing very well. He is still having headaches every now and then (rating them between a 5-8) and the stomach pain.  While we are all anxious to get home, we want to ensure that we have everything we need to help minimize the pain Jack has been in.  The goal is to talk with Dr. Claire about the options for a take home medicine, practice it for a few hours here in the hospital to make sure it works, and then head home!

With Dr. Natia letting us know things might become harder during the first few weeks of radiation, we want to make 100% sure we have medicine that can ease Jack's pain. Speaking of...

Tomorrow is the 1st of 30 days of radiation.  They will transport Jack to Emory for the appointment, and Dr. Natia will be there to ensure all goes well this first time.  The actual process of delivering the radiation should only take 15-20 minutes and won't be painful at all for Jack.

We will most likely be coming back to the hospital for another night following radiation, and Jack is excited his big sister Tiff will be joining the slumber party for a night.

Plus, if tomorrow is anything like today, it's going to be...

A party in a hospital room!


Not only did Granny, 2 of Jack's aunts & several cousins come by today, but Jason (our dear cousin who is an incredible musician from Asheville), stopped in and sang a few tunes, including a family favorite hymnal "How Great Thou Art".  

Then, one of Tiffany's old time friends Christie came by, who just so happens to also have an amazing voice, and they sang together a duet of 'You've Got a Friend'.   WOW, what music can do for the soul! Jack was singing along, waving his hands, and smiling from ear to ear.  (Tiffany and Norma did get videos and I will post them shortly).

Other cousins sent a very stylish hat to Jack (through Jason), a long-time family friend brought him an awesome souvenir from Germany, and another aunt, uncle and cousin came by and hung out, bringing fun halloween decorations, bright sunflowers and delicious dinner.

Overall, it was a great day and Jack is finally relaxed and asleep, enjoying the quiet.

We will update tomorrow on any progress with his liver, chemo treatments and our estimated time of departure.

We love you all, and can only ask that you continue to pray.
XO,
April

An attempt to break it down simply....

Hi dear friends & family,


Whew, what a day. And we aren't even the ones who got poked and scanned and had to wait till 2pm to eat. :)  


One thing was confirmed today in case any of us had any doubt... 
Jack is a rockstar. Jack is a major trouper. Jack makes an impression on EVERYONE he meets.


Now, moving on to details about today...


The meeting with Dr. Natia (the radiation doc) went great.  She spent about 2 hours with us all, answering all of our questions, explaining things very thoroughly, and making sure we were all comfortable with next steps. She showed us the difference in the MRI from 2 weeks ago, and the one from Sunday.  With the obvious change in size (caused from both bleeding around the tumor and the tumor spreading), they want to begin treatments to both the brain and the spine as soon as we were ready.  Great news is that we are all ready to start something, and agreed that a biopsy would prolong treatment more than any of us are comfortable with.


Dr. Natia helped us understand the benefits of proton radiation vs. photon radiation, and expressed that because of the location of Jack's tumors (mid-brain), the only real difference in proton & photon would be in his spinal area.  She is going to set up a call for Mary to speak with a proton radiation specialist to hear more about it.  However, with the information we learned today, and recognizing the benefit to keeping Jack at home surrounded by friends and family, we are leaning more toward doing the treatments at Emory.


To be proactive and save us a trip, they went ahead and fit Jack for his radiation 'mask' today and set an appointment for the first treatment on Wednesday.  We are still anxious to speak with the pediatric oncologist from Johns Hopkins, but are feeling great about starting Jack's treatment on Wed.


Overall, we all really liked Dr. Natia.  She was very hopeful and genuine, yet very realistic and honest.  Some of the things she shared were:


The road ahead of Jack is going to be tough.  The radiation they are putting him on is going to be fairly intense, and may seem as though in the first few weeks that it's doing more harm than good.  His headaches will most likely continue, his throat may become sore, he will probably lose his hair, parts of his body may become weak or numb, and his skin will become red and itchy (almost like sunburn) where the radiation beams hit.


He will go for radiation treatments 5 days a week, for 6 weeks.  Every Wednesday, both Dr. Claire and Dr. Natia will run their diagnostic tests on Jack to ensure that he is still strong and reactive. They will be working as a team throughout the treatment cycle. They don't typically do MRI's or CT scans during the course of treatment, as radiation can cause some inflamation and result in unclear scans during the cycle. So, the next time we will be able to compare scans will be after treatment is finished.


What's the plan for chemo?
There is no decision yet on the type of chemo treatment they want to pair with the radiation, but it will most likely start shortly after radiation. We are expecting to hear from Dr. Claire on this more tomorrow.


And then there is his liver...
Like I mentioned yesterday, the enzymes in Jack's liver were registering pretty high in both his Saturday and Sunday labs.  They did an Ultrasound on that area today, and it came back that there is some fluid surrounding his liver, possibly caused by his steroids.  They have scheduled a CT scan for tomorrow to help them see exactly what's going on, and then will make adjustments to his medicine as necessary.


We can only hope this is what is causing Jack's intense stomach pains lately.


Please continue to pray like crazy that Jack's pain becomes non-existent & that he remains strong (both in his faith and physically), and that the rest of us embrace God and his plan in all of this.  


We remain hopeful that Jack will set new records with the treatments we are doing & and be the subject of new stories for these doctors to tell. (And we all know that he has already provided many great stories of laughter for these doctors...)


XO
April (and the gardner fam)