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)

from the one and only JACK!

hey everybody,


thank you for your continued blessings and prayers. i am here receiving treatment and am excited to go home to my bed soon...


my nurse's name tonight is Veronica and she has been great. 


nothing else new and exciting with me, but i would love to hear what is new and exciting with all of you. please post replies asap, as my sisters or parents read them to me often.


oh - and if anyone wants to bring me a chocolate milk shake or butterfinger blast, that would be a terrific idea.


have a great night. love you all.
jack (transcribed by april)

the weekend activity & getting ready for tomorrow!

Dearest friends & family,

We are continually amazed by all the generosity and support of all of you.  Thanks for being so amazing!

A few things you may or may not know about our weekend include...

We made another trip to the hospital...

On Saturday morning, Jack began complaining about headaches that hurt to level 10, so after calling Dr. Claire (who thank God was the on call doc again), Mary & Dad brought him in to the ER. They admitted him and right away started him on a higher dosage of his steroid to help relieve the pressure and morphine for the pain.

He is feeling much better, and is mostly frustrated with us saying 'no' to his requests for sweets and our constant attempts to ration his meal portions.  The boy is definitely hungry! :)

While here, they went ahead and did another CT scan and MRI...

So, that knocks out the one they had scheduled for tomorrow.  Although Dr. Claire hasn't had a chance to go over the MRI with the radiologists, what she does know is that the area around one of the tumors does look enlarged since our last scan due to some blood either inside the tumor, or just outside the tumor.  This is NOT dangerous for Jack, and in fact, could explain part of what's causing him some of the pain. 

She will speak with them tomorrow before our appointment at 9am so we have all the information at hand. We are anxious to meet this team and ask lots of questions about what's in store for Jack.

Oh, and one more thing...

Jack was also complaining a bit about his stomach hurting (around his right side/ liver area), so they have scheduled an ultrasound for tomorrow just to ensure everything is in working order.  Jack is feeling much better in this area after some medicine. We will update on that, but we anticipate if anything, it may be a reaction to the combination of medicines he has been on.

On a brighter, lighter note!

Tiffany made it safely and we love having her here!  We have had some good laughs as a family already, and are excited to all be home together hopefully tomorrow.

AND i can't help but mention that the team here at CHOA could not be more awesome.  We have loved all the nurses helping us so far and are truly blessed to live in a city that offers such an incredible facility for kids.

We will update more tomorrow.

Thanks for all the well wishes for Jack and prayers being sent his way! 

XO!

April 

Dr. Claire just called... and one more pic!

Hey all,

Dr. Claire just called and gave us some things to be super thankful for, and Mary just sent me another photo I just had to share!

First, we have an appointment with the radiation specialists on Monday morning at 9:10am to talk through all radiation options.  They'll be prepared to talk through both proton and normal radiation, so we can understand the differences.  We feel blessed to have their team so focused on Jack!

Then, following the radiation appointment, Jack will be getting another MRI to compare with the slides from the one 2 weeks prior.  If there are any progressions, they will most likely just move on the radiation/ chemo combination and forego the biopsy.

The surgeon's are still meeting Monday morning as well, as i said before, to look closely at the procedure and availability of the OR.

Either way, we should know pretty much all the information needed to make decisions by Monday afternoon/ evening. Thank God for things moving along quickly.

And a huge blessing is that Dr. Claire is sending Jack's slides and information to a close colleague (and in her opinion the best out there in pediatric oncology) at Johns Hopkins.  IF JH wants to see Jack and give a 2nd opinion on next steps, Dr. Claire will do everything she can to help us get there, and get in soon. Thank you Dr. Claire!

Ok, ok... so Mary just sent me this photo as well, and I had to share!  This photo was taken during the Bruster's franchise meeting in Atlanta in May, and yes, that is actually Mr. Bruce himself!   It represents the story of how Jack made an impression on Mr. Bruce and his team, and is the best story I've ever heard of a boy who loves Ice Cream.  Bruster's support of Jack since this meeting has been incredible.

Enjoy!

XO
April

Quick update and BRUSTERS!

Hey friends & family!

A few quick updates including a fun surprise sent from Jack's favorite sweet spot!

Mary talked with Dr. Claire last yesterday afternoon, and got some new info.  One of the biggest things on our minds (and probably yours too) has been... 

So, what's the deal with the biopsy?

Dr. Boydston reviewed Jack's case with several surgeon's this week and they feel confident about taking a biopsy SAFELY.   From what we know, one of Dr. Boydston's fellow surgeon's will be doing the biopsy, as he has had more experience with this specific location.

A group of surgeons, including Dr. Boydston are going to meet on Monday to talk more about the procedure and take a look at the OR schedule to make sure they can get Jack in soon.  If for some reason there isn't an opening within a comfortable time frame, they will forego the biopsy and begin radiation. 

Dr. Claire did reinforce that the benefit of the biopsy is to help her team of oncologists determine the specific chemo treatment to partner with the radiation.  If we skip the biopsy, they will decide a protocol based on all the information to date.

One thing we hope to more about today is...

What kind of radiation?

The team of radiation specialists are meeting today, and we are hoping to hear from them as to what they would recommend for Jack.  They are considering every option under the Sun, including those that are outside of CHOA & Georgia in general. We have let the entire doc team know that we are willing to travel, if that is what's best.

While we are all ready to get started on treatments... the shining light behind all the medical terminology is that...

Jack is still making us laugh!

Most of you know his sense of humor, and please be aware that no amount of steroids or pain relief medicine or waiting for doctors to call is going to hold him down. He is still cracking jokes and making us laugh till our tummies hurt - even without trying.

And yesterday, a much awaited treat (pun intended!) arrived to Jack.... a Bruster's Ice Cream Cake! An added blessing was that the couple who delivered the cake on behalf of Bruster's, actually knew Jack & the fam from Cherokee Christian.  What an awesome visit it was - thank you Bruster's for always bringing smiles and delicious ice cream to our lives. :)

(SIDE NOTE: If you don't know the backstory on Jack and Bruce (the founder of this cold, creamy heaven), please ask.  Mary tells it better... but I can do my best!

Again, thanks to everyone who is praying & starting prayer chains, calling & texting words of encouragement, posting replies to the blog, sharing information with others, bringing us home-cooked meals, and overall just being the supportive extended family that you are.

We LOVE you all.

XO

april (on behalf of all the gardners)