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
Friday, December 31, 2010
Thursday, December 30, 2010
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.
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
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
Tuesday, December 28, 2010
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
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
Monday, December 27, 2010
Short update, more to come in the morning!
Dr. Claire just left and let us know a few key things. I'll go into more detail in the morning, as it has been a long day.
The growth the doctors saw on the cat scan does seem to appear to be bleeding and swelling surrounding the tumor. We don't know 100%, but that's what it looks like to the radiologists. Dr. Claire has more questions for them that she will hopefully get clarity on in the next day or so.
This is good news compared to the alternative. The bleeding and swelling are things the docs can try to control by simply keeping Jack's blood counts and his body focused on healing rather than breathing. He will be on the respirator until they feel like the bleeding and swelling are headed in the right direction.
We love Dr. Claire and always feel blessed and comforted to know that she is leading the team here in taking the best care of Jack.
More in the morning!
Love you all,
April
The growth the doctors saw on the cat scan does seem to appear to be bleeding and swelling surrounding the tumor. We don't know 100%, but that's what it looks like to the radiologists. Dr. Claire has more questions for them that she will hopefully get clarity on in the next day or so.
This is good news compared to the alternative. The bleeding and swelling are things the docs can try to control by simply keeping Jack's blood counts and his body focused on healing rather than breathing. He will be on the respirator until they feel like the bleeding and swelling are headed in the right direction.
We love Dr. Claire and always feel blessed and comforted to know that she is leading the team here in taking the best care of Jack.
More in the morning!
Love you all,
April
Still waiting!
Just wanted to let everyone know that we are still waiting to hear results from the MRI's. I will post something as soon as we know.
Continued thanks and love!
April
Continued thanks and love!
April
Going in early for the MRI
Good news!! They just took Jack in for the MRI early. We still don't anticipate hearing anything from Dr. Claire until later this evening, but we are relieved they are doing it now.
Will update as soon as we know!
Keep praying!!!
April
Will update as soon as we know!
Keep praying!!!
April
MRI is at 5pm today
Good morning!
We just found out Jack is scheduled for his MRI at 5pm today. They have postponed it because they are doing both a spinal MRI and brain MRI, and will do it with contrast (which means they put something special in his IV to help them see the different consistency in his brain more clearly).
The whole process will take about 2 hours, and they will make sure Jack is sedated enough that he remains still and calm throughout. We hope to hear afterwards from Dr. Claire, and will update once we do.
We'd love for everyone to pray that Jack remains restful and his vital signs and salt levels remain stable. Ideally, they would be able to wene him off the saline fluids starting this morning without his blood pressure and heart rate adjusting. He has yet to open his eyes, but we feel he knows we are there with him. And he is still as handsome and precious as ever.
Thanks for all the prayers! Love you all!
April
We just found out Jack is scheduled for his MRI at 5pm today. They have postponed it because they are doing both a spinal MRI and brain MRI, and will do it with contrast (which means they put something special in his IV to help them see the different consistency in his brain more clearly).
The whole process will take about 2 hours, and they will make sure Jack is sedated enough that he remains still and calm throughout. We hope to hear afterwards from Dr. Claire, and will update once we do.
We'd love for everyone to pray that Jack remains restful and his vital signs and salt levels remain stable. Ideally, they would be able to wene him off the saline fluids starting this morning without his blood pressure and heart rate adjusting. He has yet to open his eyes, but we feel he knows we are there with him. And he is still as handsome and precious as ever.
Thanks for all the prayers! Love you all!
April
Sunday, December 26, 2010
Keep 'em coming!
A short update!
Jack is stable and the team here is working hard to make sure he gets some much needed rest overnight and can be ready for his MRI in the morning.
They put him on a ventilator to help control his breathing and have a drain from his stomach to make sure his lungs stay liquid free. The are saying that he has pneumonia again, and have put him on antibiotics for that.
They are giving him lots of fluids with saline to help lower his heart rate, increase his blood pressure and increase the salt levels in his blood. They also increased the steroid dosage to help with any additional inflamation in his brain. We will know more (at least that is what we are praying for!) tomorrow after the docs here get a chance to look at his MRI. There is a chance that we won't know anything definite from the MRI as th clarity between tumor and bleeding is often unclear.
The great news is that as always- we are so blessed to be at CHOA with this team of doctors. I teased today that Jack didn't believe all the parts of the hospital were as great as Aflac and Rehab, and this is his way of checking out the PICU. Either that or he wanted even more nurses to fall in love with his eyes, smile and spirit. Whatever it is we are hoping to get him stronger and understand what's happening so we can take care of it asap.
We thank everyone for their constant prayers, texts, voicemails and love as we are here. It has been a scary day, but we are comforted by all of you and the reminders that there is one person who loves Jack even more than we all do. And this is in His hands.
I will update as we know more.
Love you all!
April
Jack is stable and the team here is working hard to make sure he gets some much needed rest overnight and can be ready for his MRI in the morning.
They put him on a ventilator to help control his breathing and have a drain from his stomach to make sure his lungs stay liquid free. The are saying that he has pneumonia again, and have put him on antibiotics for that.
They are giving him lots of fluids with saline to help lower his heart rate, increase his blood pressure and increase the salt levels in his blood. They also increased the steroid dosage to help with any additional inflamation in his brain. We will know more (at least that is what we are praying for!) tomorrow after the docs here get a chance to look at his MRI. There is a chance that we won't know anything definite from the MRI as th clarity between tumor and bleeding is often unclear.
The great news is that as always- we are so blessed to be at CHOA with this team of doctors. I teased today that Jack didn't believe all the parts of the hospital were as great as Aflac and Rehab, and this is his way of checking out the PICU. Either that or he wanted even more nurses to fall in love with his eyes, smile and spirit. Whatever it is we are hoping to get him stronger and understand what's happening so we can take care of it asap.
We thank everyone for their constant prayers, texts, voicemails and love as we are here. It has been a scary day, but we are comforted by all of you and the reminders that there is one person who loves Jack even more than we all do. And this is in His hands.
I will update as we know more.
Love you all!
April
Request for prayers!!!!!!
Hi all friends and family,
This is a selfless ask for all of you- and all those you know- to say some prayers for Jack! Since leaving the hospital a few days ago, he has been really out of it. When he woke up this morning, he was having a hard time breathing, so Dad and Mary called 911 to bring him intothe hospital.
He is now in ICU getting ready to get an MRI.
He is on a respirator so his breathing is more under control, and all we know from the CT scan is that there is some additional pressure in his brain... Either from bleeding or growth of the tumor.
Either way, please pray your hearts out for him!
I will update as soon as we know more. We love you all!!
April
This is a selfless ask for all of you- and all those you know- to say some prayers for Jack! Since leaving the hospital a few days ago, he has been really out of it. When he woke up this morning, he was having a hard time breathing, so Dad and Mary called 911 to bring him intothe hospital.
He is now in ICU getting ready to get an MRI.
He is on a respirator so his breathing is more under control, and all we know from the CT scan is that there is some additional pressure in his brain... Either from bleeding or growth of the tumor.
Either way, please pray your hearts out for him!
I will update as soon as we know more. We love you all!!
April
Saturday, December 25, 2010
Joy to the world (and in our home!)...
Dearest friends and family,
Merry Christmas!
Although Tiffany and I are not in Atlanta (until tomorrow), what I can share is that despite all the hard, worldly, random things happening around us, our home is filled with Joy for this Christmas season & the celebration of family, friends and love that surrounds it.
Since we have been home, Jack has been fairly content just hanging out. Literally.
We were blessed with a special bed from friends of ours who no longer had use for it, which is air-filled and helps with circulation and prevention of bed sores. It's not quite as easy for me to snuggle up next to him, but he certainly seems happy with it!
The therapy sessions have been going well, and as to be expected, they all fell in love with Jack right on the spot and are determined to help get him better.
The main challenges right now for Jack are keeping his platelets high enough, his salt levels low enough, getting his strength back so he can help with transfers and progress in therapy, and improving his speech. He has to get his blood checked every few days, and was actually admitted to the hospital Thursday night to get a transfusion and additional fluids as he wasn't able to use the bathroom on this own, and his stomach was protruding a bit.
Dr. Claire came in and checked on us, and they decided to send us home with a cathader and fluids to make sure he could stay home over Christmas. We do have an MRI scheduled for next Monday, the 3rd, and will know more about next steps after that. Fingers crossed and prayers said that we can stay home until then!
On a high note...Jack has been surrounded by lots of visitors! From my perspective, one of the coolest things (I wasn't home for but heard about), happened last week. About 8 of Jack's friends from school spent about 3 hours hanging out in Jack's room the other night. They ordered pizza, and just sat around Jack catching up, laughing, and overall, just being a group of 16 year old boys & girls visiting their friend. I can't imagine Jack participated too much in the conversation, but I KNOW he loved every second of it and will remember that night always.
Also - flashback a couple weeks - right before we left the hospital, Jack was paid a visit from Third Day's drummer, David Carr! He prayed with and for Jack, chatted with Mary for a while, and posted messages on his facebook to get prayers within his circuit going for healing and comfort. Jack loved having him there, and we feel so blessed he took to time to visit. Don't he and Jack look like longtime friends...?!? Thanks David for stopping by! :)
Also, as a small holiday treat, a good friend of mine and an artist who I have enjoyed working with so much over hte past few years, Lyle Lovett, sent a short video message of encouragement. Enjoy!
Tomorrow, we will be surrounded by ALL of Jack's aunts, uncles and cousins for an awesome day together. It isn't often we can all be in one place together, and we feel so blessed (and are so excited!) to see everyone.
Safe travels to everyone out there, may new memories be made no matter where you are today.
We love you. Merry Christmas!
April
Merry Christmas!
Although Tiffany and I are not in Atlanta (until tomorrow), what I can share is that despite all the hard, worldly, random things happening around us, our home is filled with Joy for this Christmas season & the celebration of family, friends and love that surrounds it.
Since we have been home, Jack has been fairly content just hanging out. Literally.
We were blessed with a special bed from friends of ours who no longer had use for it, which is air-filled and helps with circulation and prevention of bed sores. It's not quite as easy for me to snuggle up next to him, but he certainly seems happy with it!
The therapy sessions have been going well, and as to be expected, they all fell in love with Jack right on the spot and are determined to help get him better.
The main challenges right now for Jack are keeping his platelets high enough, his salt levels low enough, getting his strength back so he can help with transfers and progress in therapy, and improving his speech. He has to get his blood checked every few days, and was actually admitted to the hospital Thursday night to get a transfusion and additional fluids as he wasn't able to use the bathroom on this own, and his stomach was protruding a bit.
Dr. Claire came in and checked on us, and they decided to send us home with a cathader and fluids to make sure he could stay home over Christmas. We do have an MRI scheduled for next Monday, the 3rd, and will know more about next steps after that. Fingers crossed and prayers said that we can stay home until then!
On a high note...Jack has been surrounded by lots of visitors! From my perspective, one of the coolest things (I wasn't home for but heard about), happened last week. About 8 of Jack's friends from school spent about 3 hours hanging out in Jack's room the other night. They ordered pizza, and just sat around Jack catching up, laughing, and overall, just being a group of 16 year old boys & girls visiting their friend. I can't imagine Jack participated too much in the conversation, but I KNOW he loved every second of it and will remember that night always.
Also - flashback a couple weeks - right before we left the hospital, Jack was paid a visit from Third Day's drummer, David Carr! He prayed with and for Jack, chatted with Mary for a while, and posted messages on his facebook to get prayers within his circuit going for healing and comfort. Jack loved having him there, and we feel so blessed he took to time to visit. Don't he and Jack look like longtime friends...?!? Thanks David for stopping by! :)
Also, as a small holiday treat, a good friend of mine and an artist who I have enjoyed working with so much over hte past few years, Lyle Lovett, sent a short video message of encouragement. Enjoy!
Tomorrow, we will be surrounded by ALL of Jack's aunts, uncles and cousins for an awesome day together. It isn't often we can all be in one place together, and we feel so blessed (and are so excited!) to see everyone.
Safe travels to everyone out there, may new memories be made no matter where you are today.
We love you. Merry Christmas!
April
Wednesday, December 15, 2010
We are home! We are home!
Hi all!
GREAT NEWS! Jack is home (which means we get Mary back too!)!
Monday afternoon, after lots of paper work, and packing up the hospital room, Jack and Mary made the drive home and were welcomed with AWESOME signs and a house beautifully decorated for Christmas. (Thanks to our fam for the signs, and great job on decorating Dad and Charlie!!)
We are so excited to have them back, and the fam all in one place together, and are now just trying to adjust to life without nurses, both their sweet personalities and genuine care for us (we miss them all already!). Jack has been feeling ok, but still hasn't gotten back to where he was prior to getting sick as far as his mobility and speech. We have some initial evaluations with out-patient therapists over the next week, and will determine a schedule for Jack that makes the most sense.
As far as next steps on other treatments, we will be getting another MRI just after the new year, which will help Dr. Claire and the team at CHOA determine what's next. From our conversations with her, we are expecting that there will most likely be some kind of chemotherapy in the plan - eventually. However, we won't know until they evaluate the success of the radiation since we've been done, by comparing this MRI to those in the past.
We did learn that when she mentioned a few weeks ago to us about the 'surgery', she was not referring to a biopsy, but rather actually trying to remove a majority of the tumor. It sounds like surgery would only be an option if the tumor was having a major negative affect on Jack's day to day life, and other medicines weren't reacting quickly enough. At that time, Dr. Boydston, our surgeon would take a look at the MRI with Dr. Claire & other doctors and they would make a decision weighing in all the risks and benefits to every option.
We trust our team so much, and feel so blessed to have them looking out for us always.
We are so excited to spend time with friends and family this Christmas season, and to celebrate God's greatest gift to us all.
Thanks to all for continued prayers and support and love!
Be full of JOY,
April
GREAT NEWS! Jack is home (which means we get Mary back too!)!
Monday afternoon, after lots of paper work, and packing up the hospital room, Jack and Mary made the drive home and were welcomed with AWESOME signs and a house beautifully decorated for Christmas. (Thanks to our fam for the signs, and great job on decorating Dad and Charlie!!)
We are so excited to have them back, and the fam all in one place together, and are now just trying to adjust to life without nurses, both their sweet personalities and genuine care for us (we miss them all already!). Jack has been feeling ok, but still hasn't gotten back to where he was prior to getting sick as far as his mobility and speech. We have some initial evaluations with out-patient therapists over the next week, and will determine a schedule for Jack that makes the most sense.
As far as next steps on other treatments, we will be getting another MRI just after the new year, which will help Dr. Claire and the team at CHOA determine what's next. From our conversations with her, we are expecting that there will most likely be some kind of chemotherapy in the plan - eventually. However, we won't know until they evaluate the success of the radiation since we've been done, by comparing this MRI to those in the past.
We did learn that when she mentioned a few weeks ago to us about the 'surgery', she was not referring to a biopsy, but rather actually trying to remove a majority of the tumor. It sounds like surgery would only be an option if the tumor was having a major negative affect on Jack's day to day life, and other medicines weren't reacting quickly enough. At that time, Dr. Boydston, our surgeon would take a look at the MRI with Dr. Claire & other doctors and they would make a decision weighing in all the risks and benefits to every option.
We trust our team so much, and feel so blessed to have them looking out for us always.
We are so excited to spend time with friends and family this Christmas season, and to celebrate God's greatest gift to us all.
Thanks to all for continued prayers and support and love!
Be full of JOY,
April
Tuesday, December 7, 2010
Update on Jack - and a little video treat!
Hi all -
I apologize for this being so late... i know an update is WAY overdue. So, let me get right at it!
Jack has had a rough week. He began getting a cough and sore throat a bit over Thanksgiving weekend, and after a couple of chest xrays, it was concluded that he did indeed have Pneumonia. They started him on breathing treatments right away - a few times a day - and had him on Oxygen for a few days to make sure he was getting enough air into his lungs.
I will be very honest... he took a few steps back during this illness, and both his talking and strength went from improving every day, to almost back where we started.
Although this was super discouraging for everyone - especially Jack, the therapists at the hospital did what they could to keep him moving and trying to talk, and the doctors, nurses and respiratory specialists worked together to make sure he was comfortable and on all the right medicines to get better quickly.
He is feeling MUCH BETTER now... Thank God!
However, because of the set back, they are postponing our release until this weekend or early next week. We are anxious to get home, but know that he needs to be in as good of health as possible before he leaves.
While Mary is spending most of her time at the hospital, Dad and Charlie have been getting the house ready for Jack! The hospital is getting us a bed for his room, so that he can have the ability to sit up and back - be raised up and down as needed, etc. They have also given us a different wheelchair which helps support his head a bit more than the other one.
For those who haven't been to the hospital room, some good friends sent over a Christmas tree for us with adorable ornaments - which brings so much warmth and joy to the room - Thank you!
And lastly, some friends of Sixthman heard about Jack - and wanted to send a message. You may not recognize them as much as you recognize some of their great tunes! Need I say... FREEBIRD! :)
Hope everyone's holiday season is going great so far.
Keep the prayers coming!
Love you all,
April
I apologize for this being so late... i know an update is WAY overdue. So, let me get right at it!
Jack has had a rough week. He began getting a cough and sore throat a bit over Thanksgiving weekend, and after a couple of chest xrays, it was concluded that he did indeed have Pneumonia. They started him on breathing treatments right away - a few times a day - and had him on Oxygen for a few days to make sure he was getting enough air into his lungs.
I will be very honest... he took a few steps back during this illness, and both his talking and strength went from improving every day, to almost back where we started.
Although this was super discouraging for everyone - especially Jack, the therapists at the hospital did what they could to keep him moving and trying to talk, and the doctors, nurses and respiratory specialists worked together to make sure he was comfortable and on all the right medicines to get better quickly.
He is feeling MUCH BETTER now... Thank God!
However, because of the set back, they are postponing our release until this weekend or early next week. We are anxious to get home, but know that he needs to be in as good of health as possible before he leaves.
While Mary is spending most of her time at the hospital, Dad and Charlie have been getting the house ready for Jack! The hospital is getting us a bed for his room, so that he can have the ability to sit up and back - be raised up and down as needed, etc. They have also given us a different wheelchair which helps support his head a bit more than the other one.
For those who haven't been to the hospital room, some good friends sent over a Christmas tree for us with adorable ornaments - which brings so much warmth and joy to the room - Thank you!
And lastly, some friends of Sixthman heard about Jack - and wanted to send a message. You may not recognize them as much as you recognize some of their great tunes! Need I say... FREEBIRD! :)
Hope everyone's holiday season is going great so far.
Keep the prayers coming!
Love you all,
April
Thursday, December 2, 2010
We are SO THANKFUL! (sorry this is a little late!)
Hi all, I apologize this is coming to you so late! This is the blog post I wrote on Thanksgiving, and am just now publishing. I will post another update on Jack right after to make sure everyone is up to speed. Enjoy!
(rewind to last Thursday night)...
Hi family and friends (and probably some people we don't know at all...),
We have so much to be thankful for, and what an incredible holiday to remind us to be more aware each and every day of all the blessings in our lives. As the day comes to a close, I thought it might be appropriate for me to list some of the things our family thanked God for today.
We are done with Radiation! Now, Jack will be able to have his entire days to focus on working hard at therapy. He should start gaining more energy every day and his days will be much less hectic. And we found out that...
The plan is to discharge us on December 8th. Woo hoo we are going home!! After that time, Jack will do outpatient treatment, hopefully somewhere close to the house. This decision was based on the consensus from the therapists that Jack would benefit most, once he is home, from one on one treatment. And what about the tumor, you ask?
As of now, the MRI they did last weekend is showing the tumor is the same size... Which is a HUGE blessing! Both Dr. Natia and Dr. Claire are very encouraged that not only is the tumor the same size, but it has changed in composition, meaning that cells on the inside of the tumor are dying, and will hopefully continue to do so over the next 6 months! (radiation affects last that long).
Not sure exactly what that means yet as far as a possible biopsy, and/or chemotherapy, but they will do another MRI close to the New Year which should give them a better insight into what the best next steps are for Jack.
Thanksgiving Day today was actually, well, pretty perfect in my eyes. The day started off with Charlie, Tiffany and I doing the Gobble Jog on the Marietta Square. It was a great morning, and other than eating donuts before the race, Charlie was a definite leader with his perseverance and will power to finish in great time. Here is our finishing pic!
All 6 of us met at the hospital around noon, and some UGA students as part of the Children's Miracle Network provided an enormous Thanksgiving dinner for all the patients in Rehab and their families. We chatted with some of our therapists, at some delicious food, shared Thanks with other families who were there, and truly felt looked after by people we didn't even know. It was awesome.
Then, around 2pm, some of our dearest friends and amazing family put together a Thanksgiving feast of all of our favorites and brought it into the hospital room. And I meant ALL our favorites. An entire Turkey with our family recipe of stuffing, mashed potatoes, gravy, cornbread stuff with sausage, green bean casserole, sweet potato casserole, cranberries & cranberry sauce, squash casserole, apple pie, and pecan pie. And just cause we felt we needed to contribute, Charlie and I made corn casserole and pumpkin pie. I'm not kidding you when I say that we all felt so incredibly blessed and appreciative of the people who took the time on their family holiday to make ours so special!
I mean, seriously, look at this spread!
The rest of the day we spent grazing over the food, enjoying some delicious wine, watching football and just being together.
It will undoubtedly go down as one of my favorite Thanksgivings of the 30 I've had.
So, from our family to yours (better late than never, right?)...
We wish you a Happy Thanksgiving, and hope you all know how incredibly special you are to us, and how thankful we are to be surrounded and loved and supported and prayed for by all of you.
We love you!
April
Monday, November 22, 2010
LAST DAY!!! YA-HOOOOOOO
Hi friends and family!
I could not be MORE excited as I type this blog post.
That is because today is the LAST day of radiation! Jack showed his beautiful smile this morning as he was finishing his therapy, and showed off the AWESOME countdown picture of 1 left that Mary made for him.
It's a beautiful rendition of what has kept us all going through this...
Knowing His Peace.
We love you all!
With much celebration and joy,
April
I could not be MORE excited as I type this blog post.
That is because today is the LAST day of radiation! Jack showed his beautiful smile this morning as he was finishing his therapy, and showed off the AWESOME countdown picture of 1 left that Mary made for him.
It's a beautiful rendition of what has kept us all going through this...
Knowing His Peace.
We love you all!
With much celebration and joy,
April
Tuesday, November 16, 2010
Is it Groundhog Day?? :)
(I love that movie...)
Hi friends!
Unfortunately, we had a minor setback this week, but we are still seeing the end of the road!
Dr. Natia decided to scale back a tiny bit on the intensity of treatments, which, as you may have guessed, means that we will be adding on 3 days of radiation treatment. So, now, our last one will be Monday instead of tomorrow (Wednesday). Although we were a little bit bummed, we are still excited that after Monday (which is so close!), Jack can fully focus on his therapy sessions, resting and getting better!
We are meeting with the Rehab team tomorrow morning to find out their detailed thoughts, and their plan for the next couple weeks. They have told us that we should plan on staying put for the next 3 weeks (ish), but it will of course depend on Jack's progress.
Tiffany will be coming back next week to spend Thanksgiving with us, and we are looking forward to all being together again.
Love to everyone, and continued thanks for everything.
April
Hi friends!
Unfortunately, we had a minor setback this week, but we are still seeing the end of the road!
Dr. Natia decided to scale back a tiny bit on the intensity of treatments, which, as you may have guessed, means that we will be adding on 3 days of radiation treatment. So, now, our last one will be Monday instead of tomorrow (Wednesday). Although we were a little bit bummed, we are still excited that after Monday (which is so close!), Jack can fully focus on his therapy sessions, resting and getting better!
We are meeting with the Rehab team tomorrow morning to find out their detailed thoughts, and their plan for the next couple weeks. They have told us that we should plan on staying put for the next 3 weeks (ish), but it will of course depend on Jack's progress.
Tiffany will be coming back next week to spend Thanksgiving with us, and we are looking forward to all being together again.
Love to everyone, and continued thanks for everything.
April
Friday, November 12, 2010
Hello Room #365! & ONLY 4 MORE TREATMENTS LEFT!!
HOOOOOO - RAY! (says Jack as he smiles at the camera yesterday morning)...
Next Wednesday will be a day of celebration for SURE - although we will miss all the sweet people at Winship Cancer Center (a special shout out to our tech Greg who has made things so much better for all of us!)
In other news...
We have moved! Jack's new home for the next couple weeks is in Room 365 in the Rehabilitation part of CHOA. The room is cozy, we have a little more space, the bed is comfy, and most importantly, they still serve milkshakes for lunch and dinner. YAY!
It amazes me... I didn't think there could possibly be more sweet, genuine, loving nurses other than all those we had already met through the Aflac Cancer Center, but guess what, they are all over the Rehab ward too! We are feeling right at home and well taken care of, and it helps that...
Jack is doing great so far in rehab! Yesterday was only Day 2 and he is already making improvements. The therapists are teaching us a lot about how we can continue to help him progress outside of therapy, which will be super helpful once we are home.
Jack has had a great attitude about it, and is working hard. We can tell he REALLY wants to get back to where he was before all this began.
The docs in Rehab will meet with Mary today (Friday) and let her know their recommendations as far as how long we'll stay there. Will update soon.
We hope everyone has a great weekend! We certainly feel all the support and prayers daily, so keep 'em coming!
XO
April
Next Wednesday will be a day of celebration for SURE - although we will miss all the sweet people at Winship Cancer Center (a special shout out to our tech Greg who has made things so much better for all of us!)
In other news...
We have moved! Jack's new home for the next couple weeks is in Room 365 in the Rehabilitation part of CHOA. The room is cozy, we have a little more space, the bed is comfy, and most importantly, they still serve milkshakes for lunch and dinner. YAY!
It amazes me... I didn't think there could possibly be more sweet, genuine, loving nurses other than all those we had already met through the Aflac Cancer Center, but guess what, they are all over the Rehab ward too! We are feeling right at home and well taken care of, and it helps that...
Jack is doing great so far in rehab! Yesterday was only Day 2 and he is already making improvements. The therapists are teaching us a lot about how we can continue to help him progress outside of therapy, which will be super helpful once we are home.
Jack has had a great attitude about it, and is working hard. We can tell he REALLY wants to get back to where he was before all this began.
The docs in Rehab will meet with Mary today (Friday) and let her know their recommendations as far as how long we'll stay there. Will update soon.
We hope everyone has a great weekend! We certainly feel all the support and prayers daily, so keep 'em coming!
XO
April
Monday, November 8, 2010
GOOOOOOO BLUE! (and overall a great weekend together)
Man, what a game!
So, we didn't make the trip to Ann Arbor, but we did our BEST to bring Ann Arbor to Jack in Room 184! We wore all of our favorite Michigan swag, got awesome "stadium like" food from the hospital cafeteria (their onion rings are sooooo good!), snuck in a little cooler (shhh...), and watched Michigan battle it out in the game of the weekend with 3 overtimes and a final stop to Illinois attempt at 2 extra points.
Even Jack was decked out in spirited gear, & cheered the Wolverines to victory. Check out our family pic!
I only wish we had a video camera going in the room when we won. Victory dances all around. :)
Overall, Jack felt pretty good all weekend. He is still battling some pain every now and then, but they didn't find any new growth or bleeding from the CT scan, so they are just adjusting his medicines until they find the right combination that works.
He is definitely talking better and better each day, and actually had the energy to get onto Charlie yesterday for "making annoying noises". Ha! It was just like old times. However, therapy is still a must, and in fact, the head of the CHOA rehab center came and assessed Jack this morning, and it looks like he'll be doing...
Inpatient Rehabilitation starting this week. He, Dr. Claire, Dr. Natia and the team at CHOA have agreed that Jack would probably be better off getting admitted to inpatient Rehab, while he is still undergoing treatments. By being admitted, he will benefit from 3 hours of therapy every day (as long as he is feeling well), with a combination of 2 Occupational Therapy sessions, 2 Physical Therapy sessions & 2 Speech Therapy sessions.
They explained to us that starting him while he is still undergoing treatment would be best, as his muscles are at risk of getting weaker in the coming weeks. Also, he will see quicker results if he remains at the hospital, rather than just coming for day sessions, which makes perfect sense to us.
With all the paperwork and logistics, he probably won't get transferred until Wednesday or Thursday and will be there for a couple weeks. We will update once we are settled in our new, temporary room!
We continue to be showered with love and support and prayer, and we can't thank you all enough!
The big hit from last weekend was the ice cream cake Joyce with Transfiguration dropped off for Jack on behalf of Father Pat & the congregation at church. It was cookies and cream, with chocolate cake, and was from... you guessed it - Bruster's! Jack was sweet enough to share with all the nurses and other patients in the Aflac Cancer Center - yum!
Only 7 more treatments to go after today!
Counting down!
April
So, we didn't make the trip to Ann Arbor, but we did our BEST to bring Ann Arbor to Jack in Room 184! We wore all of our favorite Michigan swag, got awesome "stadium like" food from the hospital cafeteria (their onion rings are sooooo good!), snuck in a little cooler (shhh...), and watched Michigan battle it out in the game of the weekend with 3 overtimes and a final stop to Illinois attempt at 2 extra points.
Even Jack was decked out in spirited gear, & cheered the Wolverines to victory. Check out our family pic!
I only wish we had a video camera going in the room when we won. Victory dances all around. :)
Overall, Jack felt pretty good all weekend. He is still battling some pain every now and then, but they didn't find any new growth or bleeding from the CT scan, so they are just adjusting his medicines until they find the right combination that works.
He is definitely talking better and better each day, and actually had the energy to get onto Charlie yesterday for "making annoying noises". Ha! It was just like old times. However, therapy is still a must, and in fact, the head of the CHOA rehab center came and assessed Jack this morning, and it looks like he'll be doing...
Inpatient Rehabilitation starting this week. He, Dr. Claire, Dr. Natia and the team at CHOA have agreed that Jack would probably be better off getting admitted to inpatient Rehab, while he is still undergoing treatments. By being admitted, he will benefit from 3 hours of therapy every day (as long as he is feeling well), with a combination of 2 Occupational Therapy sessions, 2 Physical Therapy sessions & 2 Speech Therapy sessions.
They explained to us that starting him while he is still undergoing treatment would be best, as his muscles are at risk of getting weaker in the coming weeks. Also, he will see quicker results if he remains at the hospital, rather than just coming for day sessions, which makes perfect sense to us.
With all the paperwork and logistics, he probably won't get transferred until Wednesday or Thursday and will be there for a couple weeks. We will update once we are settled in our new, temporary room!
We continue to be showered with love and support and prayer, and we can't thank you all enough!
The big hit from last weekend was the ice cream cake Joyce with Transfiguration dropped off for Jack on behalf of Father Pat & the congregation at church. It was cookies and cream, with chocolate cake, and was from... you guessed it - Bruster's! Jack was sweet enough to share with all the nurses and other patients in the Aflac Cancer Center - yum!
Only 7 more treatments to go after today!
Counting down!
April
Friday, November 5, 2010
Tiffany is here!!!
Hi everyone!
We are all so excited that Tiff got in last night safe and soundly. We are excited about a weekend, hopefully at home, where we can all spend lots of time together.
But, as you can guess, that means...
We aren't making the trip to Michigan this weekend. Jack is actually still in the hospital, as they can't quite figure out how to keep his pain under control for an extended period of time. Anytime they try a pain medication, it seems to work for a little while, but then stop.
Last night, the pain got bad enough that they took him in for another CT scan. I will update later on any new findings...
The good news is that he is down to less than 10 radiation treatments left! Here is a cute pic taken as we hit the 10 milestone on Wednesday.
The hope is for Jack to come home today or tomorrow, so we can all hang out, watch football, cook great food, and be able to enjoy it knowing Jack is feeling better.
Oh, and the physical, occupational and speech therapists all came to assess Jack during his stay this week, and the consensus is that after treatments are over and he is feeling better, he will benefit SO MUCH from inpatient or outpatient rehab at CHOA. We all were excited for them to see him, and all be very confident he'll make tons of progress after treatments. Oh - and they gave us a few ideas of things we can do at home to help in the meantime!
More to come soon - keep the prayers coming!!
April
We are all so excited that Tiff got in last night safe and soundly. We are excited about a weekend, hopefully at home, where we can all spend lots of time together.
But, as you can guess, that means...
We aren't making the trip to Michigan this weekend. Jack is actually still in the hospital, as they can't quite figure out how to keep his pain under control for an extended period of time. Anytime they try a pain medication, it seems to work for a little while, but then stop.
Last night, the pain got bad enough that they took him in for another CT scan. I will update later on any new findings...
The good news is that he is down to less than 10 radiation treatments left! Here is a cute pic taken as we hit the 10 milestone on Wednesday.
The hope is for Jack to come home today or tomorrow, so we can all hang out, watch football, cook great food, and be able to enjoy it knowing Jack is feeling better.
Oh, and the physical, occupational and speech therapists all came to assess Jack during his stay this week, and the consensus is that after treatments are over and he is feeling better, he will benefit SO MUCH from inpatient or outpatient rehab at CHOA. We all were excited for them to see him, and all be very confident he'll make tons of progress after treatments. Oh - and they gave us a few ideas of things we can do at home to help in the meantime!
More to come soon - keep the prayers coming!!
April
Tuesday, November 2, 2010
slight setback, happy halloween!, big trip coming up & another video!
Hi everyone!
Sorry I have taken a short break from the blog, but we have been waiting to share as much information as I could. Here we go...
We had a slight setback over the weekend.
I have shared previously that we are all so thankful that Jack has, for the most part, been out of pain so far during radiation. Well, on Sunday morning (early!) that seemed to take a turn. He was complaining of headaches at a 10 (on a 1 through 10 scale), and neither pain medicine we had on hand seemed to help in the slightest.
So that afternoon... Jack and Mary took a trip to the ER. The put him on morphine, which always helps the pain and lets him catch up on sleep. They did a catscan which didn't show any obvious changes to the tumor, nor anything wrong with his shunt (thank God!). And they did some blood work, which showed that his platelets were, unfortunately, too low to let us go home.
They did a platelet transfusion Sunday night, and Monday afternoon, and will be doing one again most likely tomorrow. They are also starting him on a pain patch and some oral morphine while in the hospital to make sure it's working before they send us home. The hope is to go home tomorrow!
Other challenges like his speech and his walking seem to be improving slightly each and every day. We are hopeful that this continues as we near the end of radiation.
Oh, and as I called Tiffany on Sunday to let her know we were head back to the hospital, she requested that we channel her love for Halloween and dress in costume to go hang with Jack.
So... my friend Regina and I became hippies!
We know, it's not a huge stretch for us, but was all we could pull together at that late notice. Tiff, this is for you! :)
It's amazing that Jack still smiles for the camera, regardless of a Level 10 headache! :)
The main thing we are praying for, and that we ask you to pray for, is that the pain can be managed by us at home, and that his platelets stay high enough that we can all feel great about making...
A trip to The Big House this weekend!
We are so blessed to have the opportunity to go as a family - all 6 of us! - to the Michigan vs. Illinois football game this weekend. For those that don't know, all 4 of us kids (Tiff, Jack, Charlie & I) were born with maze and gold piping through our veins, and I'm pretty sure our first words were "Go Blue". It has been a dream for a while to see the stadium and attend a game, and we are all praying that Jack is feeling well enough to make the trip.
Either way, Tiffany is coming in town Thursday night and will be spending the weekend with us... and it goes without saying, but Jack is super excited to see his big sis again!
We are certainly feeling loved all the time, and Jack is still receiving notes, and calls, and videos and emails from incredible people, all the time. In fact, one of my favorite musicians, Brett Dennen, sent over a cool video message & some music to Jack. Enjoy!
We only have 11 treatments left, and we could NOT have gotten this far without all of you!
Love you all!
Ape
Sorry I have taken a short break from the blog, but we have been waiting to share as much information as I could. Here we go...
We had a slight setback over the weekend.
I have shared previously that we are all so thankful that Jack has, for the most part, been out of pain so far during radiation. Well, on Sunday morning (early!) that seemed to take a turn. He was complaining of headaches at a 10 (on a 1 through 10 scale), and neither pain medicine we had on hand seemed to help in the slightest.
So that afternoon... Jack and Mary took a trip to the ER. The put him on morphine, which always helps the pain and lets him catch up on sleep. They did a catscan which didn't show any obvious changes to the tumor, nor anything wrong with his shunt (thank God!). And they did some blood work, which showed that his platelets were, unfortunately, too low to let us go home.
They did a platelet transfusion Sunday night, and Monday afternoon, and will be doing one again most likely tomorrow. They are also starting him on a pain patch and some oral morphine while in the hospital to make sure it's working before they send us home. The hope is to go home tomorrow!
Other challenges like his speech and his walking seem to be improving slightly each and every day. We are hopeful that this continues as we near the end of radiation.
Oh, and as I called Tiffany on Sunday to let her know we were head back to the hospital, she requested that we channel her love for Halloween and dress in costume to go hang with Jack.
So... my friend Regina and I became hippies!
We know, it's not a huge stretch for us, but was all we could pull together at that late notice. Tiff, this is for you! :)
It's amazing that Jack still smiles for the camera, regardless of a Level 10 headache! :)
The main thing we are praying for, and that we ask you to pray for, is that the pain can be managed by us at home, and that his platelets stay high enough that we can all feel great about making...
A trip to The Big House this weekend!
We are so blessed to have the opportunity to go as a family - all 6 of us! - to the Michigan vs. Illinois football game this weekend. For those that don't know, all 4 of us kids (Tiff, Jack, Charlie & I) were born with maze and gold piping through our veins, and I'm pretty sure our first words were "Go Blue". It has been a dream for a while to see the stadium and attend a game, and we are all praying that Jack is feeling well enough to make the trip.
Either way, Tiffany is coming in town Thursday night and will be spending the weekend with us... and it goes without saying, but Jack is super excited to see his big sis again!
We are certainly feeling loved all the time, and Jack is still receiving notes, and calls, and videos and emails from incredible people, all the time. In fact, one of my favorite musicians, Brett Dennen, sent over a cool video message & some music to Jack. Enjoy!
We only have 11 treatments left, and we could NOT have gotten this far without all of you!
Love you all!
Ape
Wednesday, October 27, 2010
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
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
Monday, October 25, 2010
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...
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
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
Wednesday, October 20, 2010
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
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
Wednesday, October 13, 2010
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.
I love you, Jack.
Dad
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.
I love you, Jack.
Dad
Friday, October 8, 2010
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
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
Tuesday, October 5, 2010
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
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
Monday, October 4, 2010
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)
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)
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)
Sunday, October 3, 2010
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
Friday, October 1, 2010
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
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)
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