Friends
Thank you so much for all your well wishes, thoughts and prayers; they have boosted our spirits in this hard time.
I
wanted to update you all on whats happened the past few days. John was
released from hospital on Tuesday. He was given crutches to move around
which are not every helpful when both your hips hurt but they do help
him with getting up. Some test results are back.
The scope
showed that John has nonspecific esophagitis. They couldn't find a cause
and were told this
is not uncommon -The doctor doubts it is GVHD and best approach is
omeprazole and
keeping acid secretion down. John's fevers and sickness is a viral
infection called parainfluenza III. it also causes the common cold,
which tend to be more severe after transplantation. There is no therapy
for it other than symptom
management.
And as we said before his hip problem is a vascular necrosis.
Next
week we will meet with John's bone marrow doctor as well as an
orthopedic surgeon and hopefully we can start to make steps towards a
treatment that will allow John to return to his normal, young and
healthy mobility!
I (Amanda) am currently staying home to take care of John as it hurts
for him to move too much and standing for any longer than a few minutes
is very uncomfortable. He is still also recovering from the virus he
had. Slowly but surely he is regaining his appetite also. Thanks to our
friend Jeremy we have ac in our apartment, yesterdays 95f was quite
unpleasant!
Thanks again for all your prayers and encouragements :) I feel encouraged in the Lord more each day
Love
Amanda
Friday, June 22, 2012
Monday, June 18, 2012
Day 534
John is back in hospital. Sigh. John
came back from the UK just under 2 weeks ago. While he was away he had
persistent trouble swallowing and also very bad hip and leg pain. He
endured it the whole time with patience and strength, never complained.
Upon his return we went to see his doctor who decided to have John have
an endoscopy, a camera down his throat to check it out and also an MRI
to see what was wrong with his hips. Thursday evening John and I got
home from the endoscopy John was very sleepy from the sedation so he
went to bed and i made dinner. About 3 hours later I woke him up and he
was very hot, fever of 102 and shaking. I panicked and took him to the
ER. He has remained in Brigham and Women's since. The fevers have
largely gone but seem to intermittently return with some sickness. This
is a suspected infection. While in hospital John also had an MRI on both
hips.
The results of the endoscopy are pending but they seemed pretty sure that is GVHD (Graft Versus Host Disease). John had this last year very badly, if you remember his long stay in hospital. However we wait. Treatment options for this is steroids (prednisone)
The MRI results are back. He has avascular necrosis which means bone death. The large doses of prednisone have basically destroyed the top part of his femur bones. He is having to move with a walker and even that is hugely difficult. Obviously are hope and prayer is that the throat problem is not GVHD as the treatment for this will surely progress the avascular necrosis.
Upon John's discharge we will meet with an orthopedic team about treatment options for John's hips, this could include surgery. One thing it does include is a long journey of physical therapy before he can gain full mobility.
We will be honest with you all, John and I are very down and struggling to keep ourselves hopeful. John has come very far and we recognize all that he has come through and all the healing he has already. However this is all wearing us down so much. We just have to keep praying and trusting, it's all we have.
Love you all and thanks so much for all your support and love
The results of the endoscopy are pending but they seemed pretty sure that is GVHD (Graft Versus Host Disease). John had this last year very badly, if you remember his long stay in hospital. However we wait. Treatment options for this is steroids (prednisone)
The MRI results are back. He has avascular necrosis which means bone death. The large doses of prednisone have basically destroyed the top part of his femur bones. He is having to move with a walker and even that is hugely difficult. Obviously are hope and prayer is that the throat problem is not GVHD as the treatment for this will surely progress the avascular necrosis.
Upon John's discharge we will meet with an orthopedic team about treatment options for John's hips, this could include surgery. One thing it does include is a long journey of physical therapy before he can gain full mobility.
We will be honest with you all, John and I are very down and struggling to keep ourselves hopeful. John has come very far and we recognize all that he has come through and all the healing he has already. However this is all wearing us down so much. We just have to keep praying and trusting, it's all we have.
Love you all and thanks so much for all your support and love
Wednesday, February 15, 2012
Day 409
"Spectacularly Good!"
These are two words that I love to hear, especially in relation to John.
Life has been so wonderful these past weeks, getting back to work, catching up with family, just living free; eating out, shopping, having fun.
It's like the world has a little more color to it now.
John's appointment went well and his B cells seem to be doing something.
At his last appointment in January there a problem with his liver that was suspected acute late stage GVHD but with prednisone (the dreaded steroid from hades) that seems to be under control. More tests are being done to ensure his liver tests return to normal but we are not worried.
This month he will not have his normal IGG infusion (when they infuse antibodies into him) so they can test to see if he is making his own.Very exciting. If he is making his own then he will never need IGG again, an amazing feat considering he has been having this every month since he was 13 years old.
We love life, we love hope, we love Dr Antin, Toni and Bonnie- our faithful team and true friends through this. What a blessing God has given and continues to give.
More news to come...
These are two words that I love to hear, especially in relation to John.
Life has been so wonderful these past weeks, getting back to work, catching up with family, just living free; eating out, shopping, having fun.
It's like the world has a little more color to it now.
John's appointment went well and his B cells seem to be doing something.
 |
| John with his cousin Lillis, sweet reunion! |
This month he will not have his normal IGG infusion (when they infuse antibodies into him) so they can test to see if he is making his own.Very exciting. If he is making his own then he will never need IGG again, an amazing feat considering he has been having this every month since he was 13 years old.
We love life, we love hope, we love Dr Antin, Toni and Bonnie- our faithful team and true friends through this. What a blessing God has given and continues to give.
More news to come...
Saturday, January 7, 2012
Day 370
What better news to receive for the new year?
2012 began for us with the best news! John has B cells! AMAZING! Let's put this in perspective, he has NEVER had these before! Our God is powerful! John and I are so incredibly happy.
We counted down the new year with humbling gratitude in our hearts and more than a few tears in my (Amanda) eyes. John is alive and not only is he alive, he is healed. He will be able to live a normal life.
I remember when we were dating I had to come to terms with how sick he was and realize that his life may be short. I remember just crying and crying but always coming back to the same place "I love him, I would rather have a year with him than a lifetime with anyone else". I accepted that I may never grow old with him or raise children with him.
Now all those surrendered hopes are returning. Our hopes for a family and our hopes of growing old together are now a real possibility.
No longer do I have to worry every time he sneezes or feels sick; he will be normal, like you and I - he gets sick and gets better! :)
John came back to work on the 2nd January and we loved it! Our friend Ryan said since John returned I have been "beaming" :)
With this new year and new happy news our hearts are just so in awe of God. It really is all about Him, this healing, our lives, everything. It is all about God. He is the reason we live and breathe and move and we fall more in love with Him everyday.
John Caton is healed...to God be the glory.
Thursday, December 29, 2011
Day 361
Vacation is a wonderful word that has been vastly underused since we got married!
It was so great to be able to travel to Pennsylvania and relax with friends and family. John loves being out of the house! Wandering the Mall just loving being free! Christmas has been everything we hoped for and more.
Total peace and relaxation.
It was a celebration and reflection of a year of ups, downs and every direction in between!
We begin our trip back to Massachusetts on the 31st December and John returns to work on the 2nd January. Now I would be lying if I (Amanda) said I was not anxious about this but I trust not only in God's faithfulness over us but in our amazing YWAM family that has been an invaluable support to us this year. Without them I don't know if we could have gotten through it.
Here's to 2012, a year of healing, a year of progression. It takes time. The healing is coming...
 |
| John with his Dad and brother Ian |
Total peace and relaxation.
It was a celebration and reflection of a year of ups, downs and every direction in between!
 | |
| John with his Mom |
We begin our trip back to Massachusetts on the 31st December and John returns to work on the 2nd January. Now I would be lying if I (Amanda) said I was not anxious about this but I trust not only in God's faithfulness over us but in our amazing YWAM family that has been an invaluable support to us this year. Without them I don't know if we could have gotten through it.
Here's to 2012, a year of healing, a year of progression. It takes time. The healing is coming...
 |
| John and Amanda- Christmas 2011 |
Wednesday, December 21, 2011
Joy at Christmas
Christmas is such a special time; it is a time of joy, a time for family, a time for reflection.
I always feel an unspoken pressure to be happy at this time of year, like somehow sadness is forbidden. I don't think I am the only one to feel this. For some, as for myself these past two years, Christmas time is one tinged with a lining of tears. If you have lost someone dear to you you will understand. Every Christmas tradition, every hymn has a memory of my Dad attached. I sing "O come all ye faithful" and I see us as a family singing at the carol service every year, I wrap the gifts and I think "What would I have bought him this year?".
So why do I share this?
I don't share it for sympathy or to make you sad but I share because i know there are many like me that grieve the loss of a loved one every Christmas. I want to express to those of you that can relate that it's OK to be sad at Christmas, it's OK to be broken and to miss that special someone. I love Jesus, I love His story and the hope Christmas brings but that doesn't mean I am not allowed to be a little sad.
This Christmas remember that the baby that was born over 2000 years ago became Jesus, a man acquainted with grief and sorrow, a man who understands our pain and wants to love us through it.
True joy comes not from circumstance but from our loving God;
"For God so loved the world that he gave his only son, that whoever shall believe in Him shall not perish but have eternal life"
 |
| Amanda and Dad in 2005 |
So why do I share this?
I don't share it for sympathy or to make you sad but I share because i know there are many like me that grieve the loss of a loved one every Christmas. I want to express to those of you that can relate that it's OK to be sad at Christmas, it's OK to be broken and to miss that special someone. I love Jesus, I love His story and the hope Christmas brings but that doesn't mean I am not allowed to be a little sad.
This Christmas remember that the baby that was born over 2000 years ago became Jesus, a man acquainted with grief and sorrow, a man who understands our pain and wants to love us through it.
True joy comes not from circumstance but from our loving God;
"For God so loved the world that he gave his only son, that whoever shall believe in Him shall not perish but have eternal life"
Tuesday, December 20, 2011
Day 352
Wow this last month has flown by!
We are still reeling from the amazing news that just keeps coming! John said this morning, "I have had a persistent cough since college, I was even known for it! But these last few months I haven't coughed!" Wow I (Amanda) wept as he told me. How amazing.
Today was our last appointment before John rejoins the world. How long awaited this has been.
We travel to Pennsylvania for Christmas on the 22nd December and John is back at work on the 2nd January.
John's healing is amazing but, as we were reminded today, it is a process and one which will continue for years to come.
John's freedom is not without restriction. We can attend church but must avoid being in a large crowd and he must wear a mask and gloves. If you see us sitting at the back of the church away from people please don;t be offended. He must avoid sick people as much as possible, he must avoid being with too many children or teenagers at once, he must avoid any harmful food, i.e. Food that's not cooked till hot (an example is of a big no no is Subway and all buffets), he must avoid excessive dust and construction work (not as easy as you think as we renovate a new ministry center at work). Above all we must protect John from any infection. His immune system is building slowly but we still have not seen any B cells, therefore no antibodies yet. The hospital gives him IGG (a dose of antibodies) once a month which will help him.
So as we enter this new season of hope being fulfilled we are still asking for those who love us to extend us extra grace. We are a few years out from any sort of normality. John, according to doctors, will never have a normal immune system but should build one that's better than any he has before! Praise God :)
We are still reeling from the amazing news that just keeps coming! John said this morning, "I have had a persistent cough since college, I was even known for it! But these last few months I haven't coughed!" Wow I (Amanda) wept as he told me. How amazing.
 |
| John getting his immunizations! :) |
We travel to Pennsylvania for Christmas on the 22nd December and John is back at work on the 2nd January.
John's healing is amazing but, as we were reminded today, it is a process and one which will continue for years to come.
John's freedom is not without restriction. We can attend church but must avoid being in a large crowd and he must wear a mask and gloves. If you see us sitting at the back of the church away from people please don;t be offended. He must avoid sick people as much as possible, he must avoid being with too many children or teenagers at once, he must avoid any harmful food, i.e. Food that's not cooked till hot (an example is of a big no no is Subway and all buffets), he must avoid excessive dust and construction work (not as easy as you think as we renovate a new ministry center at work). Above all we must protect John from any infection. His immune system is building slowly but we still have not seen any B cells, therefore no antibodies yet. The hospital gives him IGG (a dose of antibodies) once a month which will help him.
 |
| John made cookies for his Doctor, shaped like cells! |
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