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.