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...

Day 289

He just keeps looking better and better!

John is doing so very well. We still await the big news, does he have B cells? Will he continue to create T cells and will they function effectively. So far all we know is slowly he is getting more and more T cells.

John was due to begin lowering his immune suppressants 3 weeks ago but due to a rash on his face it was delayed. John was prescribed an ointment to help with the rash but we have had many problems obtaining it from our pharmacy so here we are 3 weeks later with nothing! In the meantime the rash seems to be better. John was advised to also put a small amount of 1% hydro-cortisone on his face but it seems every time he does this the rash gets worse! Who knows why? 

As day 289 begins and John feels and looks normal the isolation is starting to become draining and difficult. The first 200 days were so crazy with sickness and hospitalizations that we never really had a second to think but now we have lots of time to think.  John wants so badly to be back at work, with his friends. Just to be able to go the store! 

The original plan at the start of this year was a 12 month isolation period but with all of the setbacks we have encountered and his immune suppressant tapering not even starting yet it is hard to imagine it would not be extended.  Truth is we are too scared to ask the doctors; the idea of his isolation being extended, even if just a month, is devastating. 

And so we pray on, and keep trusting God. We know the promises He has made to us and that his ways are very different to ours.  God out no time limit on His promise, we just know He is faithful. 

Update on our financial support: God has been blessing us so much! We now just need around $200 more a month; over a half of what we started needing!  If you are interested in joining our monthly support team email Amanda at electromand.ywam@gmail.com. Thank you so much for all who have responded to our need!

Transparency- Update

Dear Friends

Thank you so much for all of you who responded to our email last week. It was so good to hear so many of you related with our hearts and have been praying for us. We thank you also to those who are considering financially partnering with our ministry; either by monthly support or special one time gift.

We wanted to keep you updated on our needs, as promised.

This last week God has begun to bring us closer to our $400 extra support a  month. We have had 4 new people express their want to commit to support us monthly and one family raise their monthly giving! We are so thankful God put us on their hearts! We still await to hear exactly how much 2 of them are committed a month but we have an extra $55 a month coming in now! To God be the glory! And so we pray on and continue to ask you to pray with us, consider us in your monthly giving, and connect with us so together we can see God's kingdom expand not only in New England but the ends of the earth. As I type I think about the 1,111 people who gave their hearts to Jesus in Taiwan; so many of them had never heard the name of Jesus, never heard of a creator God- in fact one night our team did outreach in a square that had a temple which was dedicated to the "unknown creator God"! They got to tell people that the creator God is not unknown, He is real, He loves you, He is Jesus and He wants you to be in relationship with Him. What an amazing privilege to share God.

So our total now is $345 and we will keep you updated!


Thank you so much for taking the time to read this, be encouraged that God is working powerfully in our world :)

Connect with us to hear more...johnedwincaton@gmail.com

Much Love
John and Amanda

John and Amanda Caton

Day 267

It was an early morning in clinic but happy to say it was a short appointment :)
John is looking much better, all vital signs good and he is even beginning to consistently gain weight.
All counts also look good (red, white and platelets). His T cell level is also good at 374 at last test (normal range is between 400 and 500). Doctor believes this will continue to go up which is very exciting! John having T cells is a miracle and our hope and prayer is that they will continue to multiply to a normal human level. Another t cell level test was done today and we will find results tomorrow.
They have also been measuring John's B cell levels. John has never had these before. The last level in August still showed that he had none. We await to see if this will change.
John was due to come off the anti-rejection drugs today but that was delayed due to a suspected resurgence of Graft Versus Host disease (GVHD); John has a rash on his face. Please pray with us that this is not GVHD as that would complicate things.
Overall the future looks bright and we continue to see progress, albeit slow.

Transparency

Transparency. Openness. Honesty.

Our hearts yearn to live a life defined by these attributes, and yet one thing holds us back. Fear. Fear of judgment--not only from others but from ourselves. Fear of a lack of provision--what if we can’t pay our bills? Fear of the future--what if John gets sick again? And yet the very brokenness that should lead us to God and to our friends is the one thing that leads us away.

Away from expressing our need and into self-sufficiency.

As we prayed last night, going over our budget for the coming year, we knew we were in need and yet every part of us resisted admitting it.
A wave of realization hit us.
We needed to confess. We needed to repent.

So often this year we have been led by fear in our finances. We stockpiled food, buying more than
we needed because we were so afraid we might not have the means to get more. John
spent much of this year too sick to drive, so every time I could get a ride I spent as though another
ride would never come along.
We should have expressed our need. We should have humbled ourselves to ask for help.
We should have trusted God more. He has surely proved faithful to us.

And so we write today to repent openly, confess and ask for your forgiveness. Those of you who
give to us, we ask you to forgive us for not making Godly decisions in our finances. God is changing our
hearts, leading us to a deeper place of trust in Him. Thank you so much for your commitment to us, you
are truly invaluable and we love you.

We also write to swallow our pride and say we need help. Our projected expenditure for the coming
year leaves us with a deficit of $400 a month. This year we have relied heavily upon one-time donations,
which have been a great blessing.
We ask that you would pray about joining our team, if you are not already part of it.
Giving is easy. It can be done by check or online at www.ywamboston.org; there is an option to set up
a monthly direct debit transfer, so it can happen automatically.  We also have a Paypal account, if that is easier for you.
If you are in the UK please contact Amanda at electromand.ywam@gmail.com.

Thank you for taking time to read this.

Our promise to you is that we will be more open from now on, about our needs, and about our hearts.
In return we ask you to do the same. As the body of Christ we need each other.  In our shared
brokenness can be found true joy in the Lord.

We look forward to hearing from you.

Much love,
John and Amanda Caton

Revival

Our hearts yearn to see revival in Boston.

As we have prayed, worshiped and served in this city to our surprise God has bought a revival in OUR team! As we have prayed to see the spirit of independence, pride and intellectualism broken over Boston God has begun to break those things over our individual lives. There is a new openness within our team, a new surrendering and a deeper level of brokenness.

This is O so good.

How can we meet the broken if we are not also broken? How we can we bring a solution to a problem we do not understand?

We know God is doing a new thing in this city and in our ministry. He has blessed us with a new building, a new location (closer to the city) in a vibrant multicultural area and a new refreshed sense of purpose.

He is breaking us out into new areas we have only dreamed about! We are finally breaking ground in our Campus Ministry and this Fall we begin having meetings at Tufts, BU, MIT, Berklee College of Music and Harvard. Our evangelism is also evolving; spreading now to include internet evangelism. Our new building also enables us to host many more community events!

In the immediate future we face a big task.

Our new building need a lot of TLC; many of our days have been spent cleaning and fixing things; we have come so far and yet have far to go.

On October 19th our performing arts team begin a 4 week 'Encounter' tour; 2 weeks will take them PA, MD, CT, OH and VA and then 2 weeks will be spend performing in the New England area. Amanda will be involved in the New England tour.

It's so exciting here right now I want you ALL to be involved?

If your hearts are moved as you read this please let us know! We love to connect with people, not only to pray for us but so we can pray for you! It's what it's all about.
Pray....
Give....
Connect....
Join us :)

Day 243

He just keeps looking better!

His doctors are all so happy with the progress John is making. He is now completely off steroids and has had no re-occurrence of the GVHD. His platelet, red and white count are now normal and the latest chimerism is showing a slow and steady rise in the graft taking over. Overall Ian's cell now comprise of 78% of John's cells :) and he is beginning to produce most of his immune cells.

At the end of this month John will begin to be tapered off his anti-rejection/immune suppressant drugs ; we hope to see the graft get stronger and stronger!

Although it is early days and too early to say John will have normal functioning immune system after this we can say that all signs, right now, point to the transplant being a complete success.

We walk in hope and in faith. We hold fast not to the words of doctors or the results of tests but the word of God which will accomplish all it has said. God will be faithful to do as He has promised. As I sat and prayed a few days ago I wondered "Is it arrogant or presumptuous of me to say that God will heal John?" Immediately I felt God say "No, it is true wisdom to trust in my words which I have spoken to you".

And so we press on, not in arrogance and not in blind faith but in the words of God whose promises never fail and whose love never leaves.

Day 210

How wonderful it is to have so little news there is no need to blog!

John has been progressively getting stronger and better without any new infections or setbacks. Today we saw his doctors who was again beaming! He said John was doing "spectacular" and that his counts "could not be better".
John's red, white and platelets all normal human levels.

They drew for the latest chimerism and we will get the results in 4 weeks at our next appointment...yes we get one month off from the hospital! Praise God :)

Day 196

Amanda ready to attack the basement!

We like short clinic days! Under 2 hours and we were in and out.

John's counts continue to look "amazing" in the words of John's nurse. The only slightly sad part was they had not drawn blood for the Chimerism test yet and won't be till our next visit in 2 weeks! So we have to wait longer for more great news but everyone still seems positive as the counts are so good!

Now we have 2 weeks of NO hospital visits! Hopefully :)

I thought we should share this photo as it's very funny! Amanda taking no risks cleaning up some mold in our basement from a little flood! Good news is it's all bleached and cleaned up!

Day 192

John feeling much better

He is home.

After just 3 days in the hospital John is allowed home. The good news is before he left we found out his white count had doubled! His abosolute neutrophil count (anc) is now at a level the doctors wanted to see! (Neutrophils are the bodies first line of defense). I am unsure if he had these, or if these functioned before transplant.

John has had no more fevers and is much more like his old self :)

There is much to celebrate but still much to anticipate and wait for. Let me explain... John has always had white cells, when I say always I mean before transplant. His issue has been dysfunctional T cells and an absence of B cells. We had the transplant to fix that, we do not know if it has fixed that yet; we may know a little more about when the Chimerism test comes back. Perhaps 2 weeks wait on that.

We are excited though but anxious to hear more news. Obviously it's great news that his counts are going back up but we hold out to hear whether the transplant is fixing that particular thing; the thing we really need. 

Please pray for us, in the wake of many pieces of good news it has been easy to get swept up in it and forget the big news is still to come. He is NOT fixed yet; right now he is getting better and healing from many infections and the transplant, but the most important and big news is to come.

Day 188

John with his giant platelet!

John was re-admitted to Brigham and Women's Hospital in Boston yesterday with a 103.5 fever and a suspected bacterial infection. 

Last night and today he has had no fevers.
He is on 2 antibiotics that he will come home on very soon, providing no other fevers arise.

The good news is the counts are still good! To celebrate I got John a plush stuffed platelet! (Platelets are what clots your blood to stop you bleeding when you cut yourself). John spent many months not having too many of them! He nearly have the normal amount now! Hurrah!
Doctor's drew blood for another Chimerism test today and that will be the confirmation of whether the boost is definitely working! All signs point to very good news in that area!

As heart breaking as it was take John back to hospital we know it was a good decision, he obviously needed antibiotics.

He could be home as early as tomorrow! O how I hope!

Day 186

Photo taken by John's Mum- July 2011

I am amazed by John's ability to sleep.

This week I have barely seen him awake! He has been fighting an on and off fever for over a week now. It seemed to subside for the early part of the week but since Thursday it keeps popping it's head back. Today was not bad, highest temp was 100.6 which is low but is indicative that he fighting some kind of infection. All tests done last week at clinic were negative.

So since Thursday I have been staying home. Making sure he eats, drinks, takes medications etc. I really love taking care of him and although I miss my team that are doing outreach for 2 weeks I don't regret for a second choosing to stay with John.

My hope is that I can return to work tomorrow or Monday, probably Monday as would like to see John have one whole day without any fevers before I leave him.

I miss him so much when I am at work, it may sound dramatic (which I am prone too) but I feel like half of me is missing when he is not with me, I know God called us into ministry together and being there without him just feels wrong. 

God knew about this year.
He knew the challenges we would face.
Hope we have more good news soon....

Day 184

Everything is still looking good, doctors smiling and the science is starting to show God's promise to us.

John's fevers cleared up last week but unfortunately resurfaced today. Trying to keep him home and rested and well hydrated; our only option.

Next week the doctors will draw another Chimerism test which should reveal more conclusively how much the boost has worked. And in the next 2 months John will begin to be slowly tapered off his medications which prevent transplant rejection; scary times but it's all looking very positive.

Hope is what has got us this far, hope in what God has spoken to us. Hope is scary though. The counts going up fills us with so much joy but at the same time there is apprehension, "Is he really going to healed?" That question means so much it paralyzes us, "could we dare to hope?"
I know often God's promises don't look the way we would wish them too sometimes but at the same time I know I cannot deny all He has said.

Our decision in the end was to simply declare that today was a good day and let's see what happens tomorrow. For right now John is home and all looks well, fever aside.

Day 177

We are still reeling from yesterdays news!
We still shake our heads and ask "Did that really happen?"


John, although beginning to build a new immune system, is still very weak, very susceptible to infection. Since Sunday he has been having on and off fevers, not super high but ranging from 100 to 102. Today was the 102 fever. We called his nurse to talk, all the while I am praying "Please don't send us to the ER"

They asked him to come the clinic, get a chest x ray and blood work and we would go from there.
We were both pretty calm, I mean the transplant is the most important thing to us and that's going great and we must expect more bumps in our journey, infections will come until his body can fight them.

The good news, and O how it feels good to say the phrase twice in  2 days, is that his chest x ray is totally clear! All blood work so far is negative, although many viral, bacterial and fungal tests have been sent. So the nurse said it is safer for him to go home and rest and if any tests come back positive she will let us know.

O and in 24 hours all his counts are steadily still going up!

So here I sit and type and out of the corner of my eye I see my sleeping John, all tired out from a long day.
But he is home and it is so very good :)

Day 176- The Day we have waited for!

It's been 176 days coming....

Finally, O finally!
The clinic at the Dana was so busy today, all our appointments ran late. We waited and waited to see Bonnie, our lovely nurse.
"I wonder if the counts went up?" "What if they went down?" "What if the boost did not work?" What if it did work?" - Our minds we racing.

Then a beaming Bonnie walks in.
"Did anyone tell you?" she asked
"Your counts are amazing! I can't believe I get to give you the good news!"

So I am sure you have gathered it looks like the boost is working and John's graft is getting stronger by the day! Platelets are up, Red cells up and white cells up! In fact it is working quicker than anyone expected!
It's the day we have been waiting for.
Suddenly every tear seems worth it.
We have hope again, this could really heal John. Really heal him.

Praise God, it's Him all the way. His promise is coming to pass. He deserves all glory!

We are so glad to share this amazing news with you! :)

Let's see how it all began...

On January 5th our bone marrow journey began! I cannot believe I never shared this video of Ian's stem cells being given to John. This was such an exciting day for us, the "the first day of the rest of our lives" we said.
We still believe it, after everything that's happened.

We live in faith
So what does that mean?

That was my challenge yesterday. John and I both woke up feeling a little under the weather so I got up cleaned everything and proceeded to sit there in a mask; John got up feeling yukky! Took his temp 100.8. Now technically I am meant to call his doctor but I stepped back and asked myself "Do I truly believe that taking my husband to the ER is a good idea?" Of course the answer is no.

So I sat back and I did something the old me, 6 months ago me, would never have done. I turned to John and I said "Ok I am going to take your temp every fifteen minutes, I am going to give you Dayquil and you are going to drink lots of fluid and rest...I believe God is building a normal immune system in your body so today I am going to treat you like a normal human being with a sniffle"
I did
No more temps after that. He woke this morning feeling much better.

Now some of you may say that was foolish but I believe it was the right thing to do and as a consequence he is feeling better and he did not have to go into hospital where he has picked up nearly all of his nasty infections that past few months!

Anyway thanks for your prayers, we see the doctor on Wednesday- praying and hoping for more good news!

Thank you!

Please enjoy a video of the Caton's being their normal fairly awkward selves! It's not scripted, I am sure you cannot tell lol :)

Day 172

John REALLY enjoying his first Dunkin all year!

Clinic day! Normally these drag out and John needs every blood product under the sun!

Today was NOT one of those days :)

We arrived and for the first hour we had 3 nurses just trying to find a vein they could use to take blood, John's body has been through so much his veins are still recovering; they seem to hide when nurses come in!
lol they even wrapped his arm in hot packs which eventually worked!

The good news is that John needed no infusions today! No blood products! A good sign :) Keep praying :)

Day 171

John after his clinic appointment Tuesday

We wait and we wait and we wait some more!
This has been the slowest two weeks as we wait to see if the boost have been successful.
John saw his doctor on Tuesday and they seem positive that the boost will work. John's counts were still low but had no tanked which could be a good sign; all he needed on Tuesday was IV magnesium when normally he needs the works! (red cells, platelets etc).
John is looking better too, still run down but doing well.
He is even beginning to get a little more hair back :)

Can you see a little bit of hair coming through?

John goes to clinic tomorrow and Tuesday and we should be able to be to tell if the boost is working this week or not, obviously it will take a long time to see if it is fully works. Please keep praying, this is an anxious time.

Day 165

Friday we went to see John's doctors.
His counts were low which we expected but it seems they decline far less quickly than before.
These past few months his counts (red cells, white cells, platelets) would tank within day's but John's seem to drop a little slower now. This is probably due to some of John's drugs being lowered.
It is still too early to tell any results from the boost.

We believe the trend is up.

We see the doctor again on Tuesday.

Day 161

John with his T Rex balloon from Ian and Beth

Home! Home! Home! Home!

On Monday June 13th John was finally released after 2 weeks back in Brigham and Womens Hospital with many many infections.

Once one cleared, another came.

It felt like it never ended.

While he was admitted the doctors performed the stem cell boost, taking cell from Ian. Even before the boost was given John's counts began to rise and even though they are still low this is a good sign that John is finally on the way up. He has had no adverse reaction to the new cells yet but it is early days.

The next month will be crucial.

Ian, John's brother, needed to give 5 million stem cells and he gave 17 million! The doctors described this as a "super human amount".

John is still on IV antibiotics that Amanda has learn to administer as well as care for his pic line.

John's platelets have been low for months which means even simple blood draws result in bruises like the one in the picture opposite on John's arms.

He is healing. 

All counts are doing well and we see the doctor on Friday and we hope and pray for more good news :)

Day 155

Ian and Beth arrived on Sunday, what a welcome relief to have family here to support us.

One thing a bone marrow transplant does is isolate. 

It isolates you from society, home, relationships, health and even hope.

Ian has been getting Nubegen shots all week to boost his white cell count so when he gives to John it can have as many immune cells as possible. 

John has had multiple infections this week. Monday, the day he was due to be released, his blood pressure dropped, his heart rate went through the roof and his oxygen levels decreased. It was a worrying few hours. He has a new pneumonia and gall bladder inflammation. The two are unrelated and time will tell how they clear up.

Today his white cell count is up, as are his platelets; higher than they have been in weeks. His red cells are low because he is beginning to pass blood again. Our big fear is that it's the GVHD (Graft Versus Host Disease) coming back but we must resist jumping to that conclusion as there are other perfectly reasonable explanations.  For example, another infection, some inner irritation of the intestinal tract, an effect of his low platelets these past weeks or a consequence of when his blood pressure dropped. 

Please pray it's not the GVHD. It's one of our worst nightmares.Especially pray for wisdom for the doctors as if this is GVHD and they infuse more white cells then the result could be very bad as the extra cells would fuel the attack. 

Through all of this I am being reminded, mainly by Beth, to remain positive and remember what God has said.  

6 months of heartache and disappointment has worn us down...we confess we have doubted.

As I watched John have an ultrasound of his gall bladder on Monday I asked God, "What can I say to John right now? I feel so helpless and I want to say something, anything that can help"

God bought to my mind the story of Job and how in his suffering his friends told him to just "curse God and die", they were so convinced that God was allowing Job to suffer because he was sinful. But how God loved Job and had a way out for him and a greater blessing following his suffering than what he had before so I whispered in John's ear "Don't curse God and don't be tempted to give up, He does not hate you, He is not torturing you, He loves you and He will be faithful to His word"

Day 152

Here we go again...

I(Amanda) could not feel like more of broken record if i tried.

John was meant to be released today but he awoke with a headache and fever, the same symptoms he was admitted with on Tuesday.  Doctors said his chest line was infected so they removed that yesterday but today, who knows? A resurgence of the old infection? A brand new one? We just don't know. All I know is it's another night of being apart.

John has spent more nights away from me this year than with.

Ian and Beth arrive today for the boost which will hopefully take place this week. Unfortunately that's complicated too as doctors can take the cells from Ian 2 different ways and they have not decided which yet. We will find out on Monday. 

John and I are fighting to stay positive and it's a fight we could easily loose, and often have moments when we do. We want to hold fast to God's promises to us but to be honest that is not easy. 

His ways are higher than our ways

His thoughts higher than mine (Issiah 55)

If I were God I would not have done this year the way He has but I am not God and my reasoning and understanding are not like His. I guess this is what it means to trust.

I know deep in my heart, under all my tears and frustration, that God is good and loving and powerful.

On a different note we would like to thank those who have been so generous as to bless us through buying things from John's wish list. If you are interested in helping us in this way you can visit:

http://www.amazon.com/John-Caton/wishlist/27QSOK99I3M0F/ref=cm_wl_search_1

Please complete a gift note as then we know who has sent it.

(someone very kindly bought John a knee pillow and electric blanket but we do not know who so please if it's you drop me an email (electromand.ywam@gmail.com) or facebook me as we would like to thank you!)

Day 149

It's happening very quickly now.
Doctors have rushed the stem cell boost to next week! Ian and Beth arrive this weekend, pre-op Monday and Thursday is the big time. It's quite overwhelming.
I got back from Pittsburgh and I knew John did not look as well as when I left. We arrived at clinic on Tuesday and he had a fever of 103; they admitted him. He has some sort of bacteria in his blood, that's all I know right now.
So this is it! Our final shot? I don't know but it sure feels like it sometimes. To say this year has been overwhelming is an understatement. I won't lie it has been a fight every day to resist anger, self pity and hopelessness; some days I win, some days I loose- other days I do both. It's like walking through Jello.
Thank you to all those who have been so encouraging to us, I owe my avoidance of a mental breakdown thus far to you! :)
Seriously though your words and love have been amazing. So many of you tell me (Amanda) how strong I am but I want to confess that I am not strong, I am weak, so weak and it is only through God's strength that I even get up in the morning. Most mornings I don't even ask God to help me and yet He does; if that's not true love I don't know what is.
He meets me, though I do not always meet Him.
I will keep you all posted on next weeks events. I have said it many times and it is yet to come true but we hope next week is the beginning of John's climb to ultimate health and healing.

I told John "The Best is yet to come"....

Thanks so much to those who have bought of our wish list, how overwhelmingly wonderful and kind of you all.

Day 146

 "How can we help you?"

So many people who love us ask us this everyday. Our normal response is "Prayer" and still that is our number one need. However, as I was speaking with John I realized there are many items that John would like that would make his life a little easier as he seeks to regain strength. 

John has made a 'wish list' on Amazon.

http://amzn.com/w/27QSOK99I3M0F 

We would ask if you would take a look.

We wanted to give everyone the opportunity to help us in this way if they feel led too.

By each item is a description of why John would like the item.

We thank you in advance for helping us in this practical way as well as for all your prayers which we so desperately need in this uncertain time.

On a personal note, I (Amanda) had a wonderful time in Pittsburgh at my good friends Jessi and Aaron's wedding. It all was wonderful and they looked amazing! It was very cathartic to spend time with my girlfriends and just loose control for a little while :) It was also nice to see my family, Ian and Beth. I only wish I could have seen all the people I love in West PA.

It was hard to leave John though and I am glad to be back where I belong, by his side :)

Day 140

"For nothing is impossible with God" read the windscreen of a car as it whizzed past me as I walked to get John's lunch. How did God know we needed to hear that today?

John's counts have been bad for weeks now. The doctors thought it was probably the drugs John was on and that as they tapered those the counts would go up; alas his white cell and platelet count are tanking worse than ever. The doctors want to give him a "boost"; this means Ian, his brother and donor, coming and giving John more stem cells. The doctor ensures that the graft is taking as the red blood cells are doing well but John's white cells do not seem to be progressing as quickly. This could be for a number of reasons:
1. Sometimes they just take longer. Many transplant patients get a "boost" and it just gives the body a kick and the white cells catch up.
2. It is drug related. John's steroids were tapered again today and if counts go up they will delay any "boost".
3. John's underlying condition means he is unable to sustain white cells or any kind of immune system.
Number 3 frightens us.
God showed us that car because of number 3.

When I (Amanda) think about this transplant not healing John I get consumed with deep hopelessness. I have felt extremely discouraged these last few weeks, since John's fall. It's feels like everything is piling on top of us. I look around me and I see every other couple our age enjoying life! Thinking about their future! Planning families and I think "Why not us? Why must we face this?"
As we sat in the hospital today I just took a moment with God. I gave him all my sadness, anger, self pity, my hopelessness and he said one word to me

"Remember"

Just then I remember Issiah 55 and how much that boosted my faith and my hope so we read it again together.
It's what has kept us walking all day, kept us from giving up.

Today was long. Emotionally draining. As we returned home this evening we noticed John's chest line was bleeding, "great we thought" as we traipsed once again to the ER so they could fix it. They are keeping John a few hours to ensure the bleeding has stopped and then he will come home.

Tomorrow, I (Amanda) am going to Pittsburgh to be a bridesmaid at my friend's wedding. Please pray for me as leaving John is very hard, especially considering our news today. He will be taken care of by my Mum.

Day 129

Can you believe it's only been 129 days since transplant? Can you believe we are not even half way through this year?

Sometimes those questions taunt us. Sometimes they fill us with dread and disappointment. Sometimes they tempt us to give up.

How good is God?
He see's our hearts are weary and broken and meets us.
While I was praying a few nights ago I poured my heart to God. I told him that every day I feel like we have no strength. Just as I began to cry God spoke the words "Isaiah 55" to me. I had no memory of that book and figured it was perhaps just my mind wanting to hear something, despite my pessimism I looked up this passage and my eyes immediately landed on words from verse 8 till end of the chapter:

"I don't think the way you think.
   The way you work isn't the way I work."
         God's Decree.
"For as the sky soars high above earth,
   so the way I work surpasses the way you work,
   and the way I think is beyond the way you think.
Just as rain and snow descend from the skies
   and don't go back until they've watered the earth,
Doing their work of making things grow and blossom,
   producing seed for farmers and food for the hungry,
So will the words that come out of my mouth
   not come back empty-handed.
They'll do the work I sent them to do,
   they'll complete the assignment I gave them. 

 "So you'll go out in joy,
   you'll be led into a whole and complete life.
The mountains and hills will lead the parade,
   bursting with song.
All the trees of the forest will join the procession,
   exuberant with applause.
No more thistles, but giant sequoias,
   no more thorn bushes, but stately pines—
Monuments to me, to God,
   living and lasting evidence of God." 

Need we say more.

What a beautiful, personal, living and loving God we serve.

Day 121

John and I watching the Royal wedding!

The words of Psalm 139 have been such a comfort to us these past few days. Knowing that even though John is "complicated" for doctors, God formed him by His hand and that no part of John is hidden from Him.

At the end of the day we have learned over these months to trust only in God.

Another challenging few weeks. Just one week after John's fall he is back in hospital. 

On Monday 2nd May went to the hospital for a regular appointment for blood tests etc. John has been having chronic nose bleeds, which had only got worse in the previous days. These were a result of low platelets (clotting factor), a side effect of some of his medications. We spent the whole day trying to stop but nothing would work so with sadness we knew we would have to yet again go to the ER. While there John began coughing and the doctors seemed concerned. They ordered a chest x ray and found what is thought to be phenomena, he has been in Brigham and Women's hospital since.

Today he went for a bronchoscopy. We await the results. 

These struggles and hardships will only make John's future healing evermore sweet. 

Day 111

"For the first time in months I feel well rested" 
These are the words I uttered to my friend Steph this weekend.

I may have spoken too soon.

I (Amanda) was awoke by a bang and a shout of pain from John, I have never jumped and ran so quickly. He had fallen and smashed his head on our hard wood floor, it was pretty bad; a lot of blood. We knew his platelets were low (platelets control clotting factor so when they are low it is hard for the body to stop bleeding). With this we knew we must go to the ER. It broke my heart to take him to the hospital, "I only just got him home" I thought.

His head was banged up pretty bad, about 10 stitches above his eye. His eye is swollen shut, looks terrible but the good news is the CAT scan showed no internal damage so we just wait for the swelling to go down. The bleeding stopped although intermittently starts again.

He has been re-admitted to the hospital so they can keep an eye on him (If you'll excuse the pun) but hopefully he will come out tomorrow.

Early on today in the ER John and I knew we had a choice of how we dealt with what had happened. We could be angry and question "Why God? Have we not been through enough?" and we could self pity. Or we could remember what is true.
Remember what we know...
God is Good,
God Loves us,
God is all powerful.
If the above is true then God has either caused or allow this to happen for a purpose or reason we will never know. Either way we trust Him and we love Him.

Easter Saturday

How do you think the disciples felt on Saturday?

This question popped into my brain yesterday as I thought about Good Friday. I imagined myself there watching the one I loved the most, the one I had given everything too be murdered. And not just murdered taunted, beat, whipped, mocked- a crown of thorn thrust onto his head. I don't even know how I would react? 

Would I have ran?

Would I have stayed and endured the whole thing?

Would I have denied him? Would I be capable of that? The sad answer is Yes. I could have been Peter. 

But what about the next day? The Saturday.

The only way I can relate is through the experience of loosing my Dad. I remember waking up the morning after his death and for the first few seconds of that day feeling nothing, just normal. And then as my brain awoke I was hit by a crushing cloud of grief and hopelessness.

Perhaps, in some small way, this is how the disciples felt, if indeed they slept. 

And then there is Sunday! O Sunday! Sunday! Sunday! Now Sunday I can imagine fully. That Sunday saved my life 2000 years later, that Sunday bought me out of my despair, my sin, my self hatred, my hopelessness. That Sunday is the reason I live and breathe and move.  On that Sunday I went from lost to found and everything is more real since. The blinders are off!

Maybe you read this and you have never experienced the power of Jesus in your life. Be encouraged, you are passionately loved by Jesus and he wants you to know him today, it's as simple as saying '"Hi", that's all I did on my first prayer.

From there will begin the greatest adventure of your life! 

Happy Easter

Day 105

In his cool new hat and sunglasses!

Today was a long day! 10 hours of hospital appointments!

John went for his photopersis treatment today. He will receive this twice a week for the next couple of months. This takes around 3 hours a time but is totally painless to John and the nurses in that ward are an absolute riot! :) It's like a little elite social club :)

Because of the treatment John is especially at risk from sun burn and other skin problems from the sun so they gave him this amazing hat and sunglasses! Ha! Suffice to say we will be changing this hat to a Steelers one pretty soon!

John's doctor was very impressed with his progress today! He said he was "amazed" at how John was recovering! He even allowed John to have a hamburger, a fact John reminds me off often! 

It's so nice to visit the hospital and get only good news! Long may it continue we say!

John and I were praying last night. Thanking God for all our many blessings which are too many for us to list and yet we tried. In this simple act of thankfulness before God we were so in awe of all God has done for us. It dawned on me that so often in life we look for reasons for our suffering, rarely do we find it and when and if we do it never satisfies; and why? Because really deep down we are not truly looking for an answer to why we hurt, suffer, grief; we are really looking for who God is.

Is He good?
Is He powerful?
Does He love me?

When you search with your whole heart and mind you will find the answer is Yes. 


When we get to know His nature and His character and understand who He is, we can walk through anything. And where do we find Him? It is when we reach our hearts to Him and ask Him to come into our lives. It is reading His word and discovering who He is. 

If you want to know who God is, Look at Jesus. 
God as man.

It may sound cliche but we could not do this without Him and we would not want to.
 

Day 104

Finally after 52 days in the hospital John is home.

John finally eating after 5 weeks without food

He was released on day 100 of his transplant.
The GVHD of his gut seems to be under control and he is able to eat a plain but good diet. All easy to digest food like chicken, rice, white bread. We see the nutritionist tomorrow and we may be able to up it a little. John lost a lot of weight during these last 7 weeks, went from being about 190 pounds to being 156 pounds. Not only that the chemotherapy has had kick back effect and John lost his hair again. John is still receiving the photoperesis treatment which is due tomorrow.

John resting at home, Go Steelers!

The healing is slow but sure, John is very weak and tired but we are just so happy he is home :)
Thank you so much for all your prayers :)

Day 98

John and Amanda- First walk outside in 7 weeks

 FINALLY SOME PROGRESS!

7 weeks now since John was admitted into Brigham and Woman's Hospital. During these weeks there have been so many questions, worries, concerns, tears and confusion. 


We have faced many set backs, many weeks of one step forward and two steps back.


This past week has been filled with hope that has not disappointed. They started a new treatment last week and John has been taking steps forward ever since; today he had cream of wheat, English muffin and Noodle soup! 

Ian (Brother) and Beth (Sister in Law) with John

4 weeks and no solid food till now! Let's just say he enjoyed it!


He seems to be making a good recovery from an acute severe case of Graft Versus Host of the gut. He is on many medications which he will be weened off slowly; the hope is that it WILL NOT return! We are praying so hard that this bump in the road would be our last! 


We, as do our doctors, family and friends, still believe God is going to fully heal John! 


Doctor said he could be home as early as Friday! 
Keep you posted...

Day 90

John is still in Brigham and Women's hospital in Boston.
6 weeks now...
John has been making some recovery; an infection set him back a little and the Graft Versus Host Disease is being slow to heal despite the steroids which should aid his body is recovering. John is no longer having fevers or vomiting but his gut is still very damaged and in need of repair.
Doctors are trying a new treatment this week called Photopheresis.
These last 6 weeks have been filled with ups and downs and what keeps us going is knowing that the transplant has grafted and this current episode should be temporary.

God is indeed our strength.
John and I have grown closer to God in this time; we have taken all our worries, concerns, and pain to God. His shoulders can carry the burdens that weigh us. He can break through even our deepest fears.
We remain hopeful...

Day 70

The doctors have now officially diagnosed John with acute graft versus host disease. The treatment began an hour after the diagnosis was made. He will be on a course of steroid which will calm the battle down that has caused John's sickness. He will then be tapered off them as his body grows stronger. I wish I could explain that better but I am not a doctor lol
It's been a tough 3 weeks but it's nice to think John may be home in a week.
We are unsure at this point how this set back will effect the overall success of the transplant. Only time will tell. For today we are pleased to have some news.

Day 66

Thank you so much for all your prayers and encouragement during what has been a challenging 3 weeks. The last update I mentioned that John was sick. The next day we took him to ER because he began to run a fever. Since them he has been in the transplant ward at Brigham and Womens Hospital in Boston. They have been doing many tests and many diagnosis ideas have been presented and then proved to be incorrect. Although his fevers are down and he is not vomiting, he still have extreme abdominal pain and is passing blood. They have him being given nutrition through a pick line and he has not eaten all week.

On a positive note the Chimerism test showed that the bone marrow graft has taken! A piece of good news that tended to get buried with John being so sick but one that has encouraged us greatly. We praise God that he has begun his healing.

One thought for John's current sickness was graft versus host disease, which would be the graft cells attacking John (more specifically the donor's T cells). However when they repeated the chimerism test earlier this week and it showed a slight decrease in Ian's cells. They would expect to see an increase if it was graft versus host. This is potentially very scary as John's immune problems center around his T cell deficiency so we are praying and are asking you to pray along side us that Ian would begin to make more T cells and that John would in turn have normal levels.

Right now Doctors are testing  for micobacteria and more exotic infections which John is presupposed to because of his immune problems.

I wish I could tell you more but we await healing.
We trust in God above all, he is our doctor and healer. Please pray for us. This has been a scary and emotional time. I (Amanda) miss John terribly and fear the future but know God has something amazing up his divine sleeves lol :)

Day 48

"For better or for worse, huh?" John says to me as he lies there feeling nauseous.
The last 3 days have been hard. John has been very sick, lots of tiredness and dizziness, vomiting and other unmentionables. It's been pretty miserable. Very hard to see him this way.
We think it's a side effect of one of the drugs he just began taking so we think the doctor will take him off that this week. Next appointment is Wednesday...please keep us in your prayers.

Day 43 (Wednesday 16th February)

So we still await the results of the chimerism test, we hope by next Wednesday we will finally know!

John's doctor today said all of John's platelet and white cell counts are "fantastic" and this quick rise back to having healthy counts is indicative of there being some healthy bone marrow working in him; but is it Ian's or John's?

It seems highly unlikely that John's immune system has any strength after the chemotherapy but we are trying to just wait for celebrations until we have the official test results.

John is doing well, back to feeling very normal. He has begun to get up with me when I go to work and has begun to work on some of his ministry teaching as well as brushing up on his Saxophone- He is hoping to begin composing new music this year so perhaps when this is all over he can do a concert! He is also learning electric guitar and begining to play the flute again- He will be quite the one man band.

As for me (Amanda) I am with YWAM everyday, even though my wonderful DTS students have now left to go on outreach. I am helping out around the base, mainly this week with hospitality. We have a youth group from New Jersey visiting this weekend so we will be training them in Evangelism and then hitting the streets with them! On Monday I will get a day of rest with John :)

It's hard to believe it's been 45 days since transplant, at times it has seemed slow but these past 20 days have flew by. God is so good, he is with us.

Day 35

Today was a very long day at the hospital! John is part of a clinical trial as well as everything else so we ended up sticking around for extra appointments till after 4pm; we arrived at 9am. Fortunately I was able to break him out for a couple of hours so he could go home and eat and rest.

We should have had the results of the chimerism test today but alas we have to wait a little longer.

John counts are good and back to normal human levels! the doctors described his counts as "spectacular!" Platelets are 161,000.

John feels good, apart from being tired from a long day.

Day 30

I apologize for the long pause in updates, in all honesty not much has happened. John has been tired and achy but has managed to get good rest. We are meant to go on Wednesday to have another count and give blood for the chimerism test (the results of which take a week), but the snow trapped us so John went today.
His platelet counts and other counts are great! Now back up to 116,000 and white cell count has gone up. This is all normal and is no indication as to whether the transplant is working.
We are excited to have the results next Friday; we live and pray in hope that it is starting to work!
We will update you when we know...
One bonus of his count now being above 50,000 is that he can finally shave! No longer will I be married to a porcupine! :) Yay!

Day 21

Great News! The platelets are on the up! Slowly...they are now 37,000 and his white cell count, although still low, is slowly climbing!
Doctor was very happy with John today and he is feeling much more like himself!
Also all nurses and doctors agreed John looks great with a shaved head! See for yourself...

Day 19

Weekend masquerade ball at the Catons!

After a weekend of seclusion I (Amanda) am feeling much better! We made the most of our sick days, lots of tv and talking! I can think of no one I would want to be quarantined with more!

Today was a bit of a sad day. John has been loosing his hair for a few days now, getting thinner by the day. It was funny but sad to know where he had been because of all the hair he had left.
John told me tonight that it hurt when his hair came out, the nurse told us it would. So after talking we decided I would shave his head. Our quarantine just became the Caton's Hair Salon!

We laughed and joked as we did it but as soon as John went to shower I could not stop the tears. Why does it bother me so much? He looks great, he actually pulls of the bad boy short hair quite nicely; in fact it's pretty sexy! Lol

The reason it made me sad was remembering when I found out my Dad lost his hair when he had chemo and the still raw pain of loosing him came rushing back like it was yesterday. A reminder of how much Chemo has affected the men I love most.

That aside, my tears are not a lack of faith or fear. They are simply a sign of my brokenness. I know sometimes the church tries hard to cover all signs of weakness and emotion just in case people think we don't have it all together but I am not sure why?
Brokenness is ok with me right now and I am unashamed.
God is my strength and refuge. I am weak but He is strong.