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
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