Jack did great!

The removal or the respirator went very smooth... PRAISE THE LORD!

They have him on an oxygen mask as the next step, which is helping him continue to breathe strongly.

They won't be making any changes until at least Thursday.

Thank you for praying so hard!
Love you all,
April

please pray!

Hi dear friends and family,

The doctors here are prepared to take the vent out in the next couple hours. We, as a family, feel it's best for us to spend this time together the 5 of us. We are certainly praying for the best, but are prepared for the possibility of God takin this into his hands.

Please continue to pray where you are, that Jack above all will feel Gods spirit and presence in all of this.

We are still on for tomorrow! (and an update on the rest of the fam)

It's so hard to believe that it's already the 2nd day of the new year.  Partly cause I am already doing poorly on my resolution, and partly cause every year goes by faster and faster.  

I think Jack's new year's resolution was to scale down on the milkshakes and ice cream... he is doing great! :)

On a serious note, Jack has been holding steady all day.  His platelets are a little low, so we are currently waiting for him to get some more.  But other than that, his counts are all maintaining pretty normal levels.

The ICU team of docs is still planning to see how Jack does off the respirator tomorrow, most likely in the morning some time.  Once we have a confirmed time (if we get one before the morning), I will update right away.  

If Jack isn't able to maintain healthy breathing on his own, they will re-intubate him right away and get him stable again.  We will at that time reassess and determine when they will try again, and how to help make him stronger in the meantime.

Why are they in a hurry to get the respirator out?

There are several medical reasons they are pushing to have Jack try as soon as they feel he is ready. Most importantly, the longer the tube is down Jack's throat, the more dependent his body will become on the added breaths, which we obviously don't want.  In addition, the tube could cause permanent vocal chord & throat problems.

We trust the ICU docs completely and are following their recommendations.

How's the rest of the family?

Charlie is being such a trooper.  He has been a part of some hard conversations, has been in the room talking to Dr. Claire, has been so patient and self-sufficient while at the hospital, has given Jack lots of love - and occasionally a hard time, and has overall acted way older than a 13-year old kid.  Aside from pouring sugar packets down his throat... he is being such an angel for all of us. And at least with the sugar he is at least entertaining for all of us around. :)

We are so glad Tiffany stayed in town and is here with us.  We could not be doing this without her presence, as she sides with Charlie a lot of the time as our comic relief.  Her and I have had some great moments together the past few days, and she is a big part of why I am able to keep it together in the least.  She has the best energy and spirit, and keeps laughter alive.

I am hanging in for sure.  Just like Tiff, I am trying to help create balance for Dad and Mary during all of this, and love on Charlie as much as he will let us.  Oh - and we both try to see who can get the most response out of  Jack.  It's a friendly competition...most of the time. :)  Dr. Claire calls us the torture team, as we are always kidding and rubbing and messing with Jack when she comes in. Oops.

Mary is incredible.  With everything she has going on inside of her, it must be God giving her the strength and peace she faces each day with.  She manages to stay focused on Jack, is on top of everything the doctors are doing, asks great questions... and smiles while doing it all.  Sure, we all have our moments, but Mary continues to handle everything with such Grace, it inspires us all.

Dad is our rock.   The amount of love Dad has for Jack, Charlie, Mary, Tiff and I is so evident, and that is a big part of what keeps our family so close.  He is doing his best to balance work and our family, and is my hero for even trying to do both.  He too handles every moment with nothing but patience and understanding.  

The rest of our family will be headed to Birmingham for Granny's services on Tuesday and Wednesday.  The plan right now is for Dad, Mary and Charlie to attend both services, while Tiffany and I stay here.  We will of course play everything by ear, but if Jack is stable we, too, are hoping to attend services on Wednesday.  Once I know the address of the funeral home, I will post it as we have received many requests for the information.

Please pray that everyone traveling to Birmingham will be kept safe, and that peace will be over our entire family throughout the week.  Please also pray that Jack stays strong overnight and that he is able to breathe on his own tomorrow morning. 

Thanks to everyone for continued support. I know I thank you all at the end of every blog, but it still doesn't seem like nearly enough.  We couldn't do this without all of you.

XO to the moon and back,

April

Happy New Year!

Hi!

We hope everyone had a wonderful and safe New Year's. We celebrated with Jack (a little before midnight), and all made party hats to along with it.  Then, Tiffany, Charlie and I went home & woke all the neighbors banging pots and pans as we counted down.

Dad and Mary stayed with Jack, and it sounds like things were uneventful (which we like!) and they all got some good sleep.

They have changed trying to take Jack off the respirator to Monday. We aren't sure what time, but will let you know when we do. They pushed it back in the hopes that with one more day on the respirator, which is only helping him minimally, the last of his pneumonia with go away completely. 

They did take out his tube that was keeping his stomach empty and put in a feeding tube, so Jack will start getting some "liquid food" for the first time in 6 days.  It might not be milkshakes, but we are excited to start getting him some real nutrition.

His counts have remained steady, and he has enjoyed the visitors, in addition to the time we have given him to rest.  He did watch the Florida football game, and he was cheering (on the inside) the entire time. Go Gators! :)

We wish you all a wonderful year ahead...

April

Jack update and extra set of prayers, please.

Hi all,

Wow! Over the past 12 hours, I think we have had almost every family member, friend, neighbor and schoolmate of ours and Jack's come by today.  What a huge blessing of support and comfort we have all felt... thanks to all of you who stopped by!

Jack loved having everyone here, although he did let us know from his blood pressure and heart rate when he needed to rest, so we have let him be quiet and restful for the past hour.  Our plan (according to the doctor's recommendations) will be to keep a better rhythm tomorrow between visitors and resting time for Jack.

Great news - Tests came back negative for Cancer cells
Both the spinal fluid and brain fluid tested negative for any other Cancer cells, which is a huge blessing.  What that means is that Jack's biggest challenge is going to overcoming the bleeding and swelling, and us waiting to see exactly how those things have permanently impacted his body and ability to grow stronger.

The ICU team is going to try Step 1 of getting him off the respirator Sunday, and see how his body and oxygen levels are affected.  If they are good, they will try removing him from it completely - however we don't know how long they will keep him on Step 1 before moving to Step 2. I will update more when I have info.

We are asking for an extra set of prayers today.  Mary's mom, Carmela Costello, passed away early this morning peacefully in her sleep.  She and Jack were kindred spirits, and loved each other and the Lord in such a special way, everyone in our family was a little jealous. :)

We feel blessed that Granny was able to come and visit on Christmas day, and spent lots of time with Jack at home and in the hospital during the past 3 months.  While we know she is in a better place, and is now free to be with God, we have prayed all day that we can all remain strong and feel her peace in us as we continue to support and love Jack each day.

I will send more updates as they come...

Love to all, and prayers for a great year ahead.
April

an invite to visit Jack (and us!)

Dear friends and family,

A few updates for everyone are below, but before I get into the medical "stuff", I would like to extend an invite to anyone who would like come up and visit, to do so.  The team here has let us know we should operate under a 'hour by hour' mentality, instead of 'day by day' like we were (explanation of why is below).  

So, if you'd like, please come by to say hello, pray with Jack, sing him a song, joke with him, or just hold his hand.  We know he hears us, and loves the visitors.  I have included hospital information below.

Ok... on to the details:

Results of fluid tests

The pathology team at CHOA could not conclude much of anything from the fluid samples they took, because there was too high of concentration of blood.  They sent them to Emory's neuropathology team and we are awaiting the results.

The fact is, the results would not alter anything the team here is doing, but would just help us all understand why everything is happening, and what's next.  The amount of bleeding Jack has had the past few days (which appears to have stopped, thank God!) is more than they normally see from infection, radiation OR more Cancer.  So, unfortunately, there is no probable cause and the team here just doesn't have an answer.

However, Jack's body will let us know what is really going on.  If indeed it is just bleeding from radiation (which appears to have stopped, thank God!), then his counts should remain stable and his body should be able recover over time.  If it is spreading Cancer, then he won't get better, but will get worse each day (which we haven't seen yet - praise the Lord!).  If it is infection, they are already treating it with antibiotics.

They have taken him off all the sedation medicine, other than a little to keep him relaxed while on the ventilator, and are paying attention closest to his blood counts.  His heart rate continues to be low, and blood pressure continues to be high, but the prayer is that as his body adjusts to being off the sedation - those will become more normal. 

His counts will be what the team here is paying closest attention to, and what is most crucial for Jack's health. They need to be strong.

What's next?

As Dr. Claire put it... God and Jack will be writing this next chapter together.  We are simply here to love and support in any way he allows us.

Hospital Info!
Children's Healthcare of Atlanta @ Scottish Rite
Pediatric Intensive Care Unit (PICU), Room #24
Visiting hours are 8:30am - 8:30pm
You can most often find one of us in the waiting room... if not, feel free to call - 404-429-6016

We love you all!

We are constantly overwhelmed by all of you.  Even those who we don't know are playing a huge role in all of this, and we thank you for helping Jack and our family every single day. 

Love you,

April

everything we know as of today

Hi all!

Ok, i'm going to try and organize this the best way I can. And....here we go.

The growth in Jack's brain.
The area of growth, which is about an inch in diameter, appears from the MRI to be from a combination of bleeding and swelling.  While the great news is that the actual tumor appears to be the same size, the challenge at this point is to figure out how to stop the bleeding and the swelling, and start working on reducing both of those things simultaneously.

Why is there bleeding and swelling?
From what I understand, Jack is dealing with 2 types of bleeding that occur in the brain.  Necrosis is bleeding that happens within the existing tumor as the cells die off, mostly caused from radiation.

The other bleeding is around the tumor and is creating additional pressure on Jack's brain - which is why we are facing these new challenges.

Both the bleeding and swelling are most likely a direct result of radiation.


They took some samples of Jack's fluid from his shunt and his spine to help determine:

#1... the concentration of blood in those fluids,
#2... if there are any infections, and
#3... to make sure there are no other suspicious cells in those areas.

We won't find those results out until tomorrow or Thursday, but they could tell right away there was blood in both fluids, which they have told us is a result of the swelling.  We are praying the tests come back with only blood in the fluid, as they are already taking great measures to get his blood to healthy levels so it will start to clot.

This has been a really hard couple of days, but we have been surrounded by not only our amazing family and friends, but other families with children in ICU who have been incredibly supportive and inspiring.  There are so many prayers flying around in this hospital - it's AWESOME!

We are taking things one day at a time (as suggested last night by Dr. Claire), and I will do my best to update daily until we are out of ICU.

We love you all, thanks for continued thoughts and support!
April