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.

John with his cousin Lillis, sweet reunion!

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...

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.

Day 361

Vacation is a wonderful word that has been vastly underused since we got married!

John with his Dad and brother Ian

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!

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

Joy at Christmas

Christmas is such a special time; it is a time of joy, a time for family, a time for reflection.

Amanda and Dad in 2005

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"

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.

John getting his immunizations! :)

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.

John made cookies for his Doctor, shaped like cells!

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 :)

Day 326

JOHN CATON IS HEALED!

Those words keep reeling in my (Amanda) mind. Can it be true? Those words I have longed to hear and John has longed to hear are finally being spoken! It's amazing to me, it stunts my speech and makes my head spin. He is healed. He is going to be ok. This changes our whole life! 

Tuesday was the day we saw Dr Antin, best doctor in the world! He was beaming :) He said John's T cells were nearly at normal human level! WOW! John with T cells! This is huge! We still wait to see if he will develop B cells but we are confident he will. 

We got the all clear to come home for Christmas so Indiana PA here we come! John returns to work 2nd January 2012.

Each day that passes comes a deeper realization of what this means. It brings with it a deeper level of gratitude for all God has done. 

God spoke, we listened, we obeyed and He was faithful.

We are amazed. I wish I had more to say but I am just so stumped; I am sure I will share more soon.

For now please celebrate with us :)  

Day 314

Apologies for not updating everyone sooner but there has not been much to report! What a lovely statement considering our first 6 months of this year. John had another appointment two weeks ago and the doctor was very happy again saying "Your lungs are sounding the best they have ever sounded!" This is just amazing. John, his whole life, has struggled with respiratory infections so to have lungs that sound clear is nothing short of a miracle!

Now the beginning of the end has begun. Two weeks ago John stopped taking one of his anti rejection drugs (Tacrilimus//Prograf) and has been great since! No signs of GVHD! We see the doctor again on the 22nd November and they will draw more tests to see if the immune system is building  still :) (The last test was August)

The next step is coming off the last anti rejection drug (Rapamune/Sirolimus) and then he will no longer be on any immune supressents! :)

As I (Amanda) look back on this year I cannot help the tears coming. Tears of gratitude that the words God spoke to us seem to be coming to pass. It still blows my mind to think that we are just a normal couple who prayed and asked God to speak to us and He did! He inclined His ears to hear our prayers. He listened all this year as we cried to Him from our beds (so often apart from one another). He knew the whole time that these days of blessing would come. That now today on day 314 we sit in awe of His faithfulness. O dear now I am crying as I type! And yes we have much to come, much news to still hear but today we are just overwhelmed with gratitude for our loving, powerful and faithful God.

Here's to more good news to come...