hey all,
just wanted to let everyone know that we are still awaiting information from the team at CHOA. They called yesterday and left a message that they should have more info today.
As you can imagine, we are all getting a little anxious and 100% hoping they call today with definite next steps and lots of information to support it.
I will post again as soon as we know more.
Thanks for all the prayers and support (and delicious food being delivered!)
april
Thursday, September 30, 2010
Monday, September 27, 2010
today's appointment with dr. claire
Hi everyone! (this update is coming to you from April)
Radiation is definite
REGARDLESS of the biopsy, radiation will now be the first step in Jack's treatment process. Dr. Claire assured us all that they will look at all options of radiation therapy (normal radiation vs. proton radiation), and they will present to us what they feel is best, even if it can't be done in Atlanta. She went through the main differences between proton & normal radiation, and assured us that both have their benefits and drawbacks, and it will really be left up to the radiation specialists to recommend one over the other.
Right now, Dr. Claire is assuming they will recommend 6 weeks of radiation, and that they would radiate both his brain and his spine (even though there are no signs of Cancer in his spine, this would be preventative).
If they are able to biopsy, Jack will need 7-10 days to heal before the radiation treatments begin. But what about chemo, you ask?...
Chemotherapy is still likely
Dr. Claire went through a few of the chemo treatments they are considering, and it sounded like the side affects wouldn't be as harsh as Jack experienced last time. Possible but unlikely hair-loss, less nausea, and less likelihood of low platelet counts/ skipped treatment.
Chemo is a little different than radiation after a biopsy, and they wouldn't be able to start this until 2-4 weeks after his surgery, depending on the specific medicine. There is a possibility that radiation and chemo would be taking place at the same time for a few weeks. So, the question still remains...
What happens next?
We will hear more on Wednesday afternoon/ evening, and will update then. We will either need to prepare for a biopsy, which will be scary, although will provide the doctors with definitive results & the ability to determine the best treatment. OR, the doctor's will decide against the biopsy, and will move forward treating Jack as though this new tumor is a Stage 4 Astrocytoma, starting with radiation treatment and most likely combining with chemotherapy.
What you can do?
All we ask is for continued prayers. Jack is continuing to experience challenges with his vision and walking, although he is becoming quite the rockstar on his walker and wheeling himself in his chair.
Please pray that he remains focused on God first, and that the support and love surrounding him (from all of you!) would ease any pain and frustration he is experiencing.
Please pray for Mary and Dad, that they may continue to have hope, and be positive, and that as they move forward with decisions, they have trust in God, in one another, and in the team of doctors working to get Jack better.
Please pray that Charlie remains patient & understanding, that Tiffany feels at peace even though she isn't here (and that she travels here safely to be here this weekend!), and that I can continue to find a place where I can make the biggest impact for the family during this time.
We love you all, and thank you so much for everything.
XO
april & the entire gardner family
We thought it might be easier if I update on the appointment today, because there was a lot of information exchanged, and some questions and decisions still left unanswered.
I am going to try and be as comprehensive as possible... but overall, there have been some changes we want to make sure you are all aware of!
The things we know:
The tumor
Most of you already understand this, but I didn't until this past week. Jack's original tumor (Marvin) was a considered a Stage 1/ Stage 2 Astrocytoma (I could give you the specific name, but for simplification sake, I will just leave vague). The biggest difference between Marvin & this new tumor that appears to be attached to Marvin, is that the new tumor is growing much more aggressively, and acts as though it has moved to a Stage 3 or Stage 4 Astrocytoma. For the past 6 years, Jack has been considered a Cancer patient, but it isn't until this rapid growth that we are talking now about a new stage of Cancer.
However, the MRI's aren't good enough for them to say one way or the other for sure. It isn't uncommon that a Stage 1 or Stage 2 Astrocytoma will all of a sudden grow rapidly in a different area. The doctor's can NOT be sure without taking a biopsy of the tumor cells. Which is why...
Biopsy is back on the table
Last week when Dr. Claire first spoke with our neurosurgeon (Dr. Boydston), there was an initial evaluation that the biopsy wasn't the best option. Since then, Dr. Claire has talked with several other pediatric oncologists and believes that moving forward with the biopsy, as long as it's SAFE & there is LITTLE TO NO RISK for Jack, is going to really help the doctor's determine the best protocol moving forward.
Dr. Claire is hoping to talk to him today or tomorrow, and then present Jack's case as part of the department's meeting on Wednesday at noon (the meeting involves all the pediatric oncologists, neurosurgeons, and radiologists of the hospital). It will be Wednesday afternoon after this meeting that Dr. Claire said we should hear definitively on the biopsy (and if not, what the next steps will be for treatment). Ideally, the biopsy would happen as soon as there was room in the OR. For treatment, things have also changed a little bit. What we know now is that...
Radiation is definite
REGARDLESS of the biopsy, radiation will now be the first step in Jack's treatment process. Dr. Claire assured us all that they will look at all options of radiation therapy (normal radiation vs. proton radiation), and they will present to us what they feel is best, even if it can't be done in Atlanta. She went through the main differences between proton & normal radiation, and assured us that both have their benefits and drawbacks, and it will really be left up to the radiation specialists to recommend one over the other.
Right now, Dr. Claire is assuming they will recommend 6 weeks of radiation, and that they would radiate both his brain and his spine (even though there are no signs of Cancer in his spine, this would be preventative).
If they are able to biopsy, Jack will need 7-10 days to heal before the radiation treatments begin. But what about chemo, you ask?...
Chemotherapy is still likely
Dr. Claire went through a few of the chemo treatments they are considering, and it sounded like the side affects wouldn't be as harsh as Jack experienced last time. Possible but unlikely hair-loss, less nausea, and less likelihood of low platelet counts/ skipped treatment.
Chemo is a little different than radiation after a biopsy, and they wouldn't be able to start this until 2-4 weeks after his surgery, depending on the specific medicine. There is a possibility that radiation and chemo would be taking place at the same time for a few weeks. So, the question still remains...
What happens next?
We will hear more on Wednesday afternoon/ evening, and will update then. We will either need to prepare for a biopsy, which will be scary, although will provide the doctors with definitive results & the ability to determine the best treatment. OR, the doctor's will decide against the biopsy, and will move forward treating Jack as though this new tumor is a Stage 4 Astrocytoma, starting with radiation treatment and most likely combining with chemotherapy.
What you can do?
All we ask is for continued prayers. Jack is continuing to experience challenges with his vision and walking, although he is becoming quite the rockstar on his walker and wheeling himself in his chair.
Please pray that he remains focused on God first, and that the support and love surrounding him (from all of you!) would ease any pain and frustration he is experiencing.
Please pray for Mary and Dad, that they may continue to have hope, and be positive, and that as they move forward with decisions, they have trust in God, in one another, and in the team of doctors working to get Jack better.
Please pray that Charlie remains patient & understanding, that Tiffany feels at peace even though she isn't here (and that she travels here safely to be here this weekend!), and that I can continue to find a place where I can make the biggest impact for the family during this time.
We love you all, and thank you so much for everything.
XO
april & the entire gardner family
Sunday, September 26, 2010
Sunday visit
Several of Jack's classmates visited the Gardner home this weekend and Jack was in great spirits. He is very upbeat and walking around the house without use of his walker at times. He is very independent and happy to be moving freely around the house. I think everyone in the family feels so much better being home. Tomorrow, Monday, the 27th, Jack will see Dr. Claire and she will discuss the plan of action. The docs have expressed a desire to hit this thing hard and fast, which is good. I will let you all know what the plan is after the appointment with the doctor tomorrow.
Thanks once again for prayers and for all the meals you have signed up to bring. The Gardner family is so grateful for all the love and support you have shown to them. They had a wonderful visit from the folks at Bristol Oaks and Jack was welcomed home with a huge banner signed by all the students and faculty. Several students from King's Academy spent Saturday afternoon with Jack to cheer him and encourage him. Families from CCS have sent goodie baskets and food while Jack has enjoyed visits from friends and parents from the school. The out pouring of love from his teachers and friends has been so sweet. The Gardners are so thankful for the love and prayers.
Let us continue to pray for Jack and for the family. Mary's mom will stay in town for the week and Tiffany, Jack's sis, will be in town next weekend. Jack has enjoyed home cooking from his sis, April, his granny, Mrs. Costello and other family members. Paula, Mary's sister came in for the weekend and Mary's sisters, Jacqueline and Norma have spent most of their weekend with Jack.
At church today, Fr. Pat called Jack up to the front of the church and many people prayed for Jack. It was a very special service. There wasn't a dry eye in the church as sweet prayers went up to the Lord on Jack's behalf.
Jack feels so loved. Thank you all for the wonderful affection, gifts and prayers you have so graciously given. Lord's blessings on you. much love and thanks, k
Thanks once again for prayers and for all the meals you have signed up to bring. The Gardner family is so grateful for all the love and support you have shown to them. They had a wonderful visit from the folks at Bristol Oaks and Jack was welcomed home with a huge banner signed by all the students and faculty. Several students from King's Academy spent Saturday afternoon with Jack to cheer him and encourage him. Families from CCS have sent goodie baskets and food while Jack has enjoyed visits from friends and parents from the school. The out pouring of love from his teachers and friends has been so sweet. The Gardners are so thankful for the love and prayers.
Let us continue to pray for Jack and for the family. Mary's mom will stay in town for the week and Tiffany, Jack's sis, will be in town next weekend. Jack has enjoyed home cooking from his sis, April, his granny, Mrs. Costello and other family members. Paula, Mary's sister came in for the weekend and Mary's sisters, Jacqueline and Norma have spent most of their weekend with Jack.
At church today, Fr. Pat called Jack up to the front of the church and many people prayed for Jack. It was a very special service. There wasn't a dry eye in the church as sweet prayers went up to the Lord on Jack's behalf.
Jack feels so loved. Thank you all for the wonderful affection, gifts and prayers you have so graciously given. Lord's blessings on you. much love and thanks, k
Thursday, September 23, 2010
Jack is HOME!!!!!!
Jack did so well today, the docs agreed he would do best to go home. They released Jack this afternoon, so I'm pretty certain it was like deployment of troops after being in the hospital all week. I know the Gardner family will be so happy to get Jack into his own bed and happy to relax in the comfort of their home. The hospital staff was amazing, giving such wonderful care and treatment to Jack. We take our hats off to the doctors and the hospital staff and say thank you to them for all the hard work and successful surgery. Jack could not have been in better hands.
Please continue to pray for Jack for pain and discomfort. Please also pray for wisdom for the doctors as they decide the best course of treatment. Also, pray for Mary, Bob, Charlie, Tiffany and April because I know they all have a lot of catching up to do - work, home, family, bills; every day living came to a screeching halt so focus could be on matters at the hospital. Now, in addition to getting settled in, the family will have a lot of work to do to get their lives back in order. April kept watch over Jack every day and night at the hospital while trying to catch a little time to work here and there. Charlie was such a trooper as he traveled back and forth to the hospital and stayed with friends so Mom and Dad could give all their attention to the doctors and the needs at the hospital. Tiffany was in Florida, but she kept up with family and friends and Bob and Mary showed us all what wonderful parenting looks like as they led the family with strength, wisdom and love.
I know you all join me in celebrating this success and the example of the faithfulness in trusting the Lord this sweet family exhibited in the midst of this difficult time. Most of all, join me in a prayer of praise and thanksgiving to the Lord for His sweet grace and loving kindness. k
Please continue to pray for Jack for pain and discomfort. Please also pray for wisdom for the doctors as they decide the best course of treatment. Also, pray for Mary, Bob, Charlie, Tiffany and April because I know they all have a lot of catching up to do - work, home, family, bills; every day living came to a screeching halt so focus could be on matters at the hospital. Now, in addition to getting settled in, the family will have a lot of work to do to get their lives back in order. April kept watch over Jack every day and night at the hospital while trying to catch a little time to work here and there. Charlie was such a trooper as he traveled back and forth to the hospital and stayed with friends so Mom and Dad could give all their attention to the doctors and the needs at the hospital. Tiffany was in Florida, but she kept up with family and friends and Bob and Mary showed us all what wonderful parenting looks like as they led the family with strength, wisdom and love.
I know you all join me in celebrating this success and the example of the faithfulness in trusting the Lord this sweet family exhibited in the midst of this difficult time. Most of all, join me in a prayer of praise and thanksgiving to the Lord for His sweet grace and loving kindness. k
Jack is out of surgery!
Beth Patrick is with the family and she reports that Jack is back in his room from his surgery and doing well. He is sleeping soundly now and the Gardners are all there with him. The preliminary report from the spinal tap should be in this afternoon. Praise God for His mercies and a successful surgery.
Port surgery and spinal tap
Good morning all.
Please lift Jack to the Lord for successful surgery this morning and for quick healing and pain management post op. Jack was taken in to surgery at 9:00 this morning. I will let you all know once he is in recovery just how things went.
I would like to ask you all to please pray for Bob, Mary, Charlie, April and Tiffany. The family has been so strong, but they are all sleep deprived and exhausted. Please pray for them for today and for all they have to look forward to. Mary's mom, Mrs. Costello and her sister, Paula are driving in today from Alabama to stay a few days at the house, so please pray for safe travel for them as well.
The docs say if the surgery and pain management goes well, Jack could be released to go home today or tomorrow.
We spent last evening with April, Mary and Jack. Jack was in wonderful spirits, laughing and cutting up with his sis and my son, Ian. He no longer had his headache and pain behind the eyes, so that tells us the steroids are working to shrink the swelling of the 4th cranial nerve. He looked great as you can see from the pic we posted yesterday. He was all smiles!
Thank you for your prayers and please send out your blog posts to the family to let them know how you are doing.
We will be sending out an email this morning about meal scheduling for the family. That info will also be attached to this blog for ease of use. Thanks so much for your support of this wonderful family.
Please lift Jack to the Lord for successful surgery this morning and for quick healing and pain management post op. Jack was taken in to surgery at 9:00 this morning. I will let you all know once he is in recovery just how things went.
I would like to ask you all to please pray for Bob, Mary, Charlie, April and Tiffany. The family has been so strong, but they are all sleep deprived and exhausted. Please pray for them for today and for all they have to look forward to. Mary's mom, Mrs. Costello and her sister, Paula are driving in today from Alabama to stay a few days at the house, so please pray for safe travel for them as well.
The docs say if the surgery and pain management goes well, Jack could be released to go home today or tomorrow.
We spent last evening with April, Mary and Jack. Jack was in wonderful spirits, laughing and cutting up with his sis and my son, Ian. He no longer had his headache and pain behind the eyes, so that tells us the steroids are working to shrink the swelling of the 4th cranial nerve. He looked great as you can see from the pic we posted yesterday. He was all smiles!
Thank you for your prayers and please send out your blog posts to the family to let them know how you are doing.
We will be sending out an email this morning about meal scheduling for the family. That info will also be attached to this blog for ease of use. Thanks so much for your support of this wonderful family.
Wednesday, September 22, 2010
New Room information - today-update
Greetings everyone. I wanted to let you know that Jack is being moved to a room in the rehab section of the hospital, room #360. He will work with the physical therapist on balance issues.
There was a slight error in yesterday's blog so please note that Jack will have his spinal tap and his port surgery tomorrow morning, Thursday. I will let you know how he is doing tomorrow after surgery. Beth Patrick will stay the night tonight, and she will be there early in the morning to help get Jack situated. She will feed information to me as she receives it.
Please continue to lift this sweet family up to the Lord with your prayers. I'm certain there is a lot of stress and sleep deprivation in the Gardner family right now, so I know they appreciate you all so much as you pray.
Much love and thanks to everyone, Kyle
There was a slight error in yesterday's blog so please note that Jack will have his spinal tap and his port surgery tomorrow morning, Thursday. I will let you know how he is doing tomorrow after surgery. Beth Patrick will stay the night tonight, and she will be there early in the morning to help get Jack situated. She will feed information to me as she receives it.
Please continue to lift this sweet family up to the Lord with your prayers. I'm certain there is a lot of stress and sleep deprivation in the Gardner family right now, so I know they appreciate you all so much as you pray.
Much love and thanks to everyone, Kyle
Tuesday, September 21, 2010
Update for Today
Hey Guys! Here is the update that I got from Kyle tonight.
Jack looks better this morning. They are working on weaning him off morphine. They are giving him Lortab and Motrin for the pain, but his head pain is still hurting. The spinal tap will be tomorrow. The tap should further confirm no involvement in the spine. The port surgery has been postponed to Thursday at 9 am. He can go home after it if the pain is more managed and if he does well after surgery. Jack has had a pretty good day overall. They have increased the steroids to see how he handles them. Tomorrow a physical therapist is coming in to help him with balance issues and see if he'll need a wheelchair or walker at home.
He went to the garden for some fresh air and sunshine! Mary and Bob feel your love and prayers!! Please keep up the encouraging comments!!
Thanks,
Lindsey McGreger
Jack looks better this morning. They are working on weaning him off morphine. They are giving him Lortab and Motrin for the pain, but his head pain is still hurting. The spinal tap will be tomorrow. The tap should further confirm no involvement in the spine. The port surgery has been postponed to Thursday at 9 am. He can go home after it if the pain is more managed and if he does well after surgery. Jack has had a pretty good day overall. They have increased the steroids to see how he handles them. Tomorrow a physical therapist is coming in to help him with balance issues and see if he'll need a wheelchair or walker at home.
He went to the garden for some fresh air and sunshine! Mary and Bob feel your love and prayers!! Please keep up the encouraging comments!!
Thanks,
Lindsey McGreger
Monday, September 20, 2010
Praise the Lord!!
Thankfully, the spinal MRI has come back clean!!! Thank you Father for continuing to take care of Jack and for always being there when we come to you. We pray that you will keep your hands on the situation as we wait to hear the results of the brain MRI.
The family will hear from the surgeon tomorrow about the biospy. If they can do the biospy, then they will wait two days before they put the port in his chest to begin chemo. They will start steroids today to shrink the swelling in the cranial nerve.
Jack has pretty severe head pain and now both eyes are moving involunterially. His balance is off but mostly he is complaining of pain behind his eyes. They have started morphine, but it isn't taking the edge off his pain. Once they determine how aggressive the tumor is and what stage it is, they will decide about surgery and radiation. We will know more about the brain scan later tonight.
Please continue to lift up Mary, Bob, Jack, and Charlie as they go through this difficult time. Our Lord is greater than this!!
Thanks--Lindsey McGreger
The family will hear from the surgeon tomorrow about the biospy. If they can do the biospy, then they will wait two days before they put the port in his chest to begin chemo. They will start steroids today to shrink the swelling in the cranial nerve.
Jack has pretty severe head pain and now both eyes are moving involunterially. His balance is off but mostly he is complaining of pain behind his eyes. They have started morphine, but it isn't taking the edge off his pain. Once they determine how aggressive the tumor is and what stage it is, they will decide about surgery and radiation. We will know more about the brain scan later tonight.
Please continue to lift up Mary, Bob, Jack, and Charlie as they go through this difficult time. Our Lord is greater than this!!
Thanks--Lindsey McGreger
Please Pray
Jack is in his final MRI this morning. Please keep him, the doctors, and the family in your prayers.
Thanks--Lindsey McGreger
Thanks--Lindsey McGreger
First Blog Update
Good evening sweet friends, I just arrived home from a day at the hospital with the Gardner family. They are wonderful, faithful, strong people and they know the faithfulness of our Lord. Jack's oncologist, Dr. Claire visited with the family today for almost 2 hours. She delivered some challenging news to the family. Jack's tumor, itself has not grown, but now there is a new tumor at the brain stem (top of the spinal cord). The new growth is slightly larger than a quarter and the MRI done eight weeks ago did not show it. That may mean the new tumor is very fast growing and aggressive. It is actually connected to the main tumor Jack has been dealing with for six years now by a "squiggly" line. They don't really know what it all means at this point, but they intend to take swift measures to help Jack. Tomorrow, they will do a spinal MRI to determine if it has grown down into the spinal cord. They plan to have a general surgeon put in a port in his chest which will allow them to begin chemotherapy right away. They also plan to biopsy the new mass to determine what stage/level of cancer it is. Dr. Claire will be at a conference for doctors in her field so she will confer with them on Wednesday to get opinions regarding whether the tumor is operable. Once they determine that, they will know more about what the plan for surgery and possible radiation will be. The family believes this will all take place quickly, but no definite timeline has been set yet. They will also administer steroids quickly to hopefully cause the swelling of the 4th cranial nerve to subside. The cranial nerve controls eye movement and they believe the involuntary crossing of Jack's eye is being caused by this swollen nerve. Now, they understand more about why that is happening, since the nerves connect to that brain stem, spinal column. It is a lot to take in, a lot to consider, a lot to deal with.
Regarding Jack, he is very uncomfortable, sensitive to light. He is still on morphine, but not constantly and he ate fairly well today. He is in his usual good spirits, laughing and cutting up with us, but much more quiet than usual. He complains of a constant headache and pain behind his eyes, but they are doing everything they can to keep him comfortable. Beth, Mary and I had a sweet time of tears and laughter with Jack this evening. Bob went home to share the news with Charlie, who had been away for the weekend. April and Mary will spend the night with Jack and Bob will spend the night at home with Charlie after some family time tonight in Jack's room.
The family is so grateful for the emails and texts, and they want to express just how much they love and appreciate you all. I will continue to update the blog as I have news. Please feel free to leave a post on the blog to encourage Jack and the family during this time. Please continue to lift the Gardner family to the Lord and know that our sovereign Lord is in control of all things.
Lord bless you all--Kyle
Regarding Jack, he is very uncomfortable, sensitive to light. He is still on morphine, but not constantly and he ate fairly well today. He is in his usual good spirits, laughing and cutting up with us, but much more quiet than usual. He complains of a constant headache and pain behind his eyes, but they are doing everything they can to keep him comfortable. Beth, Mary and I had a sweet time of tears and laughter with Jack this evening. Bob went home to share the news with Charlie, who had been away for the weekend. April and Mary will spend the night with Jack and Bob will spend the night at home with Charlie after some family time tonight in Jack's room.
The family is so grateful for the emails and texts, and they want to express just how much they love and appreciate you all. I will continue to update the blog as I have news. Please feel free to leave a post on the blog to encourage Jack and the family during this time. Please continue to lift the Gardner family to the Lord and know that our sovereign Lord is in control of all things.
Lord bless you all--Kyle
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