14 Hours later

Hospital days are long, surgery days are almost intolerable. Those of you who have been or who have cared for a sick loved one can relate. Around 1.00pm this afternoon the surgeon told me the replacement had been a success. I waited a further 2 hours to see him; he was groggy but it was good to see him. They then asked me to wait an hour until he was transfered to his room. I waited for an hour. And then two. The third eeked by at snail pace and by the 4th I knew something was not right. They then called me back down to the post op ward. John was having trouble moving his legs; he had had an epidural but the nurse said it didn't normally take this long to gain range of motion. Suffice to say in the next 20 minutes John was lifting his knees (he's a crafty little bugger, it's like he heard the nurse say he couldn't do it and he thought "I'll show you") With that resolved we were left with 2 more issues. He has quite considerable pain at the incision site, again maybe nothing and he is runing a fever of 101. As with the first it could simply be his body adjusting. This was a big surgery and his body just got packed a whole lot of sedatives! So at 7.30pm I am back up in the family waiting room, my 10th (maybe more) cup of coffee in hand and hoping for the call any minute to go to his room and settle him in for the night. As I sit and write the verse comes to mind that talks about our battles not being flesh and blood but of spiritual darkness and light, the principalities above. I feel that in my mind. A part of me which says "despair and pity and worry" and yet another stronger part of me that says "trust, do not worry and have faith". I won't lie, I didn't have some long quiet time this morning, I haven't spend weeks fasting and seeking God for hours, I didn't "earn" this peace as I think sometimes we think we have too. The peace and warmth I feel from the Lord right now is a gift from Him to me; it is perfect Father giving his often faithless daughter the gift of trust. What a faithful father.

Hips don't lie

It seems about once every few months we have a "today's the day" moment. Here I (Amanda) am again frequenting the hallways of Brigham and Women's hospital waiting for John to come out of surgery. Fortunatly this was a planned surgery and one we have been anticipating for a long time. His pain started 14 months ago. His legs began to ache and then his hips began to feel tight. He assumed at the time it was the hills of Pittsburgh as we were visiting there, if you have ever been you will understand. It was a few months before he was diagnosed with severe avasular necrosis (John has a habit of getting oddly named diseases that very few have heard of). To put it simply when he had a bad GVHD reaction during transplant he was put on high doses of prednisone (insert blood curdling scream here *if you have been on it you will understand). These doses restricted blood flow to the hip bones and this caused them to die and become brittle. Due to medical red tape we had to wait till now to have this surgery. I am unsure if me crying at our appointment helped push the date sooner. 7.30am they wheeled him away from me, that moment is one I have never got used too. The emotion almost overwhelms me everytime. Bi-lateral hip replacments (both hips at the same time) take about 4 hours and with preperation time I was told not to expect any news till 1.00pm. As many of you know and have read I really believed it would not come to surgery. I believed I had a word from the Lord, several in fact, that God was going to heal John. I held to this. I proclaimed this. I have wrestled with this. But as I sit today I feel a deep sense of peace. And dare I say it I feel the Father's pleasure over me, like He is proud of me. I may have looked like a fool in the eyes of the world but I proved to be faithful in the eyes of my heavenly Father and that, for sure, is worth more than any earthly affirmation. In the end God was and is faithful, John is being healed, he will walk again and the "new season" that God has confirmed time and time again is coming will come to pass. Who am I to question his ways? Finally as I logged onto this blog to write I noticed our blog has had over 9500 views! I hope every person that has come and will come here will be infused with strength and hope that only Jesus can bring and please if you know anyone struggling with health issues direct them here. My next entry will be an update on John post surgery and coming soon an entry about how God used John and I to encourage a family facing a stem cell transplant. God is so good.

Update on Hips and Amanda's Surgery

I doubt anyone could say our lives are uneventful! Amanda's surgery on the 6th February went "perfectly" and her doctors are pleased with her progress; she will get all the clear in May. John saw his hip doctor last week and is scheduled for a double hip replacement on the 3rd May. We both look forward to being able to move on with our lives, John walking, Amanda healthy. It's been our hope for a long time. When we talk about the replacement we are filled with equal excitement and a tinge of disappointment. Our belief in God healing John supernaturally remains but we must also do what is right, what is medically necessary. It's not doctors or God; God uses Doctors all the time to heal people. We believe he has spoken so much over this past year about John's health and I admit (Amanda) that perhaps I misinterpreted and placed my own assumptions on what I heard. Truth is I know I heard the Lord and I know what He said, His faithfulness and goodness is not in question. However I have learned that often the problem is in the hearing, the human end of the equation. This last year has taught us so much. The art of simply trusting and the disappointment and sometimes embarrassment of walking in faith. The important thing is John is going to be ok, he is going to be able to be healed and back to normal. However God does it, it is surely his faithfulness to do it that matters. Should we complain about how He does it? Or should we just be thankful that He did what He said He would do? Pray for us as we approach yet another surgery. Pray for wisdom for the doctors, for strength for John, and for Amanda. Pray also protection over us both from the shadow of self pity. So often we are tempted to feel bad for ourselves, we look at our lot and we ask "why us?" but we know self pity is a poison and praise and worship of our Lord bring clarity and joy. Here we go again...

Amanda's Story

It feels rather strange to be writing a blog entry about my (Amanda's) health. I first noticed a problem back in June 2012 but told few people because I didn't want a fuss, plus i wanted to concentrate on taking care of John. After all he is the sick one right? Well unfortunately sickness hits us all at some point.
So here is my story and I humbly ask for prayer.

Back in June 2012 I missed a cycle and assumed, as you do as a married woman, that I was pregnant. A little scared but at peace I visited the doctor. The test was negative. So why did I not get my normal cycle? (Sorry if you are guy reading this!). In their tests they proactively also tested some other hormone levels including thyroid and one called Prolactin. Thyroid normal, Prolactin elevated. To put this into perspective, that should not be elevated unless I am in late stage pregnancy or breast feeding of which I am neither.

They waited and no cycle so 3 weeks later they tested me again, prolactin higher.
They booked me for an MRI because they thought I may have a tumor on my pituitary gland (gland shown to right)

It showed quite a sizable "cystic lesion". Back in June I suffered a very bad headache, worse than ever before and one that came on and left very quickly. I have suffered with migraines for years but this was different. It was so bad I was nauseous. Doctors think this could have been a small bleed that caused this cyst. They gave me medication and offered me surgery. At the time I lacked complete health insurance due to my immigration status (it used to be that if you had a green card less than 5 years you were not eligible for health insurance, and my status as a volunteer meant I was not eligible to buy it either; a rule that was recently overturned granting me full insurance).
Anyway I took the medication.

I went back to see my surgeon and endocrinologist before Christmas and the cyst remains, although slightly smaller. Today I called and ask them to book my surgery, the insurance has approved a 1 night hospital stay but the hospital is appealing for 3 days. So tomorrow the neurosurgery team will call and schedule me in.

I apologize for not sharing this sooner; for a long time I just wanted to not think about it but I value your prayers too much to withhold my need from you any longer.

This is a bump in the road for our family and believe once this is over I will be walking in full health again.

Thank you :)

Watch this Space!

It brings me great joy (and a little fear!) to announce that I (Amanda) am beginning the process of writing a book about the stem cell transplant experience. It has been on my heart for a few years now and more recently God has begun to speak to me that now is the time. Why do I want to write it? I want other young couples who walk through chronic illness to know they are not alone and I hope what we have been through can encourage and strengthen others who find themselves on the same journey. On a personal note I believe it will be incredibly cathartic to put into more words what happened. Please pray for me and advise me if you can! O and watch this space... :)

Nutrition

These past 6 months have changed my life, opened my eyes and stirred in my heart a passion And for what?  Nutrition.  It all began during the summer. It was a frustrating time with Johns hip doctor telling us there was no way to reverse the damage done to his hips.  In my mind I thought that can't be right, the body heals itself all the time, why not this way? We were left with the option to just wait. I spoke with my friend Laura Messina ( http://www.cnutrition.info/) I knew  she was a nutritionist and in my mind I figured what's the harm. She began to talk to me about supplements ad vitamins that would help Johns hips and also his growing immune system. At first  was skeptical. John had been having major problems with his throat, he had a stricture that meant he could not swallow well and his throat was very sore. Laura gave us some aloe juice and said take that a few times a day; within 24 hours he felt relief! Suddenly the skeptic in me shut up and I thought "wow what other hidden gems lie in natural healing!".  It has catapulted from that moment on.  I began to ask Laura questions, my mind began to race with information and my heart began to stir a passion to know more. I gleaned wisdom from my wonderful friend Jen Flickinger (http://www.mycuppyrunnethover.blogspot.com) she  is such a wise women, we text everyday what we learn. I began to read, watch and study food, what we should eat, what we shouldn't.  So I sit here today, sipping my raw milk and looking back on how different our lives look from 6 months ago. We are eating better, choosing organic and whole foods instead of food with a list of ingredients a mile long. We are choosing to be informed about our food. We are choosing to actively avoid ingredients with words we don't understand. And the amazing thing is we get better food and we are saving money!  My whole life I thought I ate well, I would read labels and think "well I don't know what that is but it's ok because if it was bad they wouldn't be able to sell it ". What a lie! Truth is our supermarket shelves are lined with tasty poison! Those words may sound dramatic but it's true. Finally this journey is bringing me closer to Jesus. Seeing how he has provided all we need on this earth, food for eating and plants and herbs for healing. This journey has just begun but I am excited about where I will go...You are what you eat. 

And so we keep trusting...

"I will hang on to your promise...there's a rest in the vine, there's a place in abiding in the vine" Sean Feucht, 'There's a rest' 

It's been overwhelming and wonderful how many people pray for John. I am just amazed how many people walk beside us in faith. Our good friend, Ethan is one those faithful ones. He has not only been praying for John but encouraging others, many who do not know John to pray also. He took us aside when we were in Pittsburgh and said "I want you to know I don't pray for John because I want God to use me to heal him; although that would be great! I pray because when I see you something happens in my heart and I know God wants to do something" The compassion in his eyes as he spoke moved me (Amanda) deeply; it wasn't pity, it was compassion; it was him joining with our hearts as we long to see John fully restored. 

I highlight Ethan (Hope you don't mind friend) but so many of you have touched us in similar ways. Thank you.

I can say through these last months John and I have grown so much closer to Jesus than ever before, there are parts of His character we may not have seen had it not been for our struggles. God has been healing our hearts; drawing us nearer to him in trust and intimacy.

While traveling we  took a week to attend our annual north east YWAM conference. Our speaker was a man called Paul Hawkins. His message was so simple and yet so profound. How we need a revelation of God's character in our lives! How we would live our lives differently if we fully trusted His goodness and faithfulness. 
I had such wonderful times in God's presence that week. Just being able to focus entirely on Him every day was so sweet.

At the end of the week John was playing his saxophone in worship when people began to pray for him. So many of our dear friends poured their hearts out to God in prayer for John; many tears being shed. One lady said to John that God was going to "renew his mind", others prophesied that he "would walk, leap and praise the Lord" and a good friend sensed that God said "he was going to do it". And so we hold these words close; knowing they could mean so many things. We simply pray that God would have His will.

We go back to see the doctor before Christmas; pray for wisdom.  For now John remains the same; good and bad days but still being able to move around pretty well. 

We know this is a season and complete restoration is close...However God does it; by a miracle of His touch or using medical science we will give Him the thanks and praise. For He alone is worthy.