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.