Jeremy…husband of Catherine, father of Ben, Simeon, Tom, Joshua & Lydia. Up until the end of April 2015, he was pastor/vicar of a group of churches on the edge of Exeter in Devon, UK. In early October 2014, aged 48, he was diagnosed with advanced cancer, a stage four malignant melanoma presenting as a tumour on his lungs. The usual life expectancy is 8-12 months. Then, in late December 2014, 23 year old Ben suffered a seizure. After prolonged medical care for what was most likely to have been a viral infection affecting his brain, Ben died in April 2015. Jeremy has up until recently seemed to have responded well to pioneering immunotherapy treatments that can extend life, but from September 2016 is now facing the fresh development of brain tumours and potentially now just months to live. On January 27th 2017 Jeremy took his last breath and went to be his Lord and Saviour. The family share their thoughts, feelings and reflections as they taJeremy…husband of Catherine, father of Ben, Simeon, Tom, Joshua & Lydia. Up until the end of April 2015, he was pastor/vicar of a group of churches on the edge of Exeter in Devon, UK. In early October 2014, aged 48, he was diagnosed with advanced cancer, a stage four malignant melanoma presenting as a tumour on his lungs. The usual life expectancy is 8-12 months. Then, in late December 2014, 23 year old Ben suffered a seizure. After prolonged medical care for what was most likely to have been a viral infection affecting his brain, Ben died in April 2015. Jeremy has up until recently seemed to have responded well to pioneering immunotherapy treatments that can extend life, but from September 2016 is now facing the fresh development of brain tumours and potentially now just months to live. On January 27th 2017 Jeremy took his last breath and went to be with his Lord and Saviour. The family share their thoughts, feelings and reflections as they take this painful and unexpected journey.

Snakes and Ladders

I’m sitting currently writingTyping at night this at 2.50am suffering from an increasingly irritating case of itchiness over parts of my body and an area of rash on my arm and stomach. The itch is such that it’s keeping me awake. I can do nothing for it except scratch and I am going to have to head into hospital today to have myself examined for possible side effects – the first – of my treatment. I’m hoping that writing will help as a distraction. But I’m not sure how successful it’s proving to be.

It’s happening, however, less than 16 hours after Ben was re-admitted to the main hospital having suffered a couple of major seizures yesterday while firstly in a physiotherapy session then back in his room at the rehab centre…and this despite the fact that he is on the maximum dosage of anti-seizure medication. He’s had a few bouts of sickness and vomiting this week which may have unhelpfully removed some of the drug from his system, but we seem to have landed on a ‘snake’ and slid back a few places on the board. He was taken in an ambulance from the rehab centre and admitted to A&E where he was drugged, assessed and, after a CT scan, sent to the High Dependency Ward for further monitoring and tests. The scan proved clear and by last evening he was waking up when prompted, sometimes replying, sometimes not, and then falling back to sleep. On top of all this, big concern has been expressed by one of the consultants over his weight loss, which has up until this point received little attention.    

snakes and laddersBut it’s happened during a further week of what has seemed to be like ‘snakes and ladders’ for him, me and us. Some days he shows signs of improvement, but other days it feels like he’s slipped. He’s been suffering from continuing shaking in his limbs and his ability to walk for any distance is extremely limited, often needing to sit down after only a few steps. But then, with his godfather Andrew visiting on Thursday, he appeared quite animated and well, and the two had a lively discussion about planes, computers etc, Ben adding a bit of humour along the way. Home with us however on Saturday, and with two old school friends visiting, he seemed to me to progressively deteriorate as the day went on, collapsing into a wheelchair as he returned to the Mardon Centre later.     

Ben, Dabi, Catherine and I had met with consultant neurologist, Dr Harrower last Wednesday to discuss progress. It was a good meeting, but one which showed he has a long way to go….his forecast stay in Rehab was described as ‘months’. Positively, Tim Harrower explained that repeat scans had indicated  progress. His latest scan showed that structurally his brain had ‘resolved’, and that the signal changes which cause seizures appeared more under control. However, he explained that so far there have been no positive results for any cause of his seizures. He is treating them as “idiopathic” (unknown cause) at the moment. Yesterday’s seizures and re-admission to the main hospital no doubt add further question marks to the mystery for the neurology team to solve. It’s left us all feeling quite wrung out and with few natural reserves to draw upon.

letterI had my own chewy moment late last week when a requested report on my condition arrived through the post. I’d asked for it to be written so it could be included to support our case with the Home Secretary for Dabi’s visa to be extended or altered. The report however was stark. Referring to our first meeting in October last year, my oncologist wrote, ‘…we also discussed the fact that the current median survival of patients diagnosed with metastatic melanoma is in the region of 8 months.”  He went on, referring to my ipilumumab treatment, ‘although you have had no significant side effects so far, it remains possible that you could still develop immune related adverse effects of melanoma which, as we discussed, may be life threatening particularly if they affect organs such as the liver or the bowel. Current published data suggests that ipilumumab will produce a prolonged period of disease control in 20% of patients. He concluded, ‘In summary, therefore, you have a metastatic melanoma, stage four with an 80% probability of disease progression despite first line treatment with a median survival, given that we are now four months on from your original diagnosis, of potentially 6 months. You remain at risk of potentially life threatening serious adverse effects of the ipilumumab treatment.’

As I read it, I felt myself internally wilt. I already knew it all, but reading it on paper was brutal. However, just as I was reading it, Bruce and Beverley, some dear Kiwi friends from our days in Timaru where Ben was born in 1991, were ‘strangely’ prompted to write to us. Half an hour after reading my doctor’s report, sitting in a dark haze and mindlessly flicking through emails on my phone, I read Beverley’s words to me and Catherine…

“….However you are all constantly in our prayers and Catherine, I especially ask for you to know the Lord’s presence. To see Deep watersyour husband and your son suffering at the same time must be extremely hard. I can’t imagine what it must be like. Remember, “When you go through the waters I will be with you, through the fire, you will not be burnt.”   You are not forgotten.”

Those words especially from Isaiah 43 were like balm for my soul.  I sat with tears in my eyes. Father had known what we were going to read from the hospital – and it had to be read. But He also knew what we needed to read, needed to know and so He prompted a friend 12,000 miles away, a friend from Ben’s birthplace, to sit and write. 

We are certainly not forgotten, and we were strengthened. And we’ve been strengthened by a small number of particularly special messages, gifts and offers of generous help from friends near and far, from churches and folk with whom we’ve shared life over many years. It was special to have Simeon take me out to lunch last Sunday for some father/son time, talking about all that’s going on, the effect that it’s having and, without any easy answers, strengthening each other. 

Looking to the Son, who suffered such agony to save us, we can face today. I can, like King Hezekiah of old, lay out my letter before God and look for His deliverance for us, in whatever form that takes, all the while knowing that we’re never alone.

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Comments on: "Snakes and Ladders" (18)

  1. Meryll Waters said:

    Dear Jeremy. I have been following the plight of you,Ben and family not only on your blog, but through the odd catch up with Nick. I have followed in silence wondering what on earth I could say that wasn’t being offered through your friends and your faith. After speaking with Nick today and reading your blog tonight I just find myself wondering how much you can endure and found the need to reach out. Please accept my very best wishes and know that you are in my thoughts and prayers. Meryll

    Liked by 1 person

  2. Christine Curd said:

    In my far less gruelling experience I have found that it is almost impossible to get to a place once and for all where All is Well whatever happens . One day it impossible to feel utterly reconciled to whatever and trusting Father. The next it can be as if that has never been and the decision has to be made again. That is particularly so when new physical challenges develop, however much they may be not totally unexpected. I guess it is like taking up the cross, it is every day. You are.not forgotten Jeremy. Neither is your family. Know that you are surrounded by so much love. May you know the everlasting arms around you.

    Liked by 1 person

  3. Susan Lawrence said:

    Dear Jeremy and Catherine. We keep up with your blog and we pray for you all everyday. You describe the journey you are on so vividly, we feel vitally connected and privileged to join with 100s of others in prayer, knowing that every prayer is heard and that you are being sustained on this roller coaster ride. One specific prayer is for a spot on diagnosis for Ben. Thank you again for your honest sharing and your faithfulness which is an inspiration to us. With love, Susan and Michael Lawrence, Christchurch, Nz

    Liked by 1 person

  4. Dear Jeremy,
    You don’t know me. My name is Imelda. I was directed to your site by a friend, Sylvia, last week. I had met you a few years ago when you ministered at a funeral and I was deeply impressed by your faith and words on that occasion.
    When I was told of your prognosis and of Ben’s illness my first thought was that you would be very angry with God and that your faith would be severely affected.
    Your posts are truly remarkable Jeremy. Beautiful and awe inspiring and I thank you sincerely for the privilege of reading your thoughts and prayers. I thank God for you and Catherine and your courage.Todays verses from Isaiah I will carry with me all day.
    it is a joy to be surrounded by so much love isn’t it.

    Liked by 1 person

  5. Nigel Mahoney said:

    Hang in there JJ, as our Summer is drawing to a close – your Spring is just on the horizon. Look forward to the newness of life and all that it will bring… Think of you often little buddy! Lots of love to you and yours. X

    Liked by 1 person

  6. Jeremy as I sit and read your blog i am amazed at your faith and tenacity. We are thinking and praying for you continuously. We appreciate your updates and despite the setbacks God is encouraging you all and holding you in his arms. I can’t believe the wording from the specialist. I know we want to know the real situation but it all sounds a bit like his glass is half full! What about the 20% chance. A big hug too for Simeon . How lovely to spend such time with your son.I wish mine would do the same. Take care and love to you, Catherine and the family. Robyn and Peter Thew

    Liked by 1 person

  7. Brother – A song I wrote about 7 years ago

    I see the sunshine through the rain
    I see the rainbow once again
    I see the colours of the promises you made
    I see the comfort in my pain
    I see your glory through my shame
    I will remember
    There are better days to come

    Better days……..

    I see the laughter through the tears
    I see your hand in future years
    It’s sometimes hard to to tell if there are better days at all
    I see tomorrows joy today
    I see the good times come my way
    I must remember
    there are better days to come

    Praying for you all daily, may His arms wrap around you all
    Steve

    Liked by 1 person

  8. Rachel Waddilove said:

    Dearest Jeremy and Catherine what can I say as once again I sit and read your blog through flowing tears. I just want to reach out to you all in love and assure you of our continued prayers…..I cannot begin to know what you are going through. I feel this morning a need to pray for peace for you both, and feel John 14 v 27 is especially for you at this time.xx

    Liked by 1 person

  9. David Beniston said:

    Oh Jeremy! The itchiness sounds maddening – as if, on top of all this, you need an impediment to sleep and rest!

    I honestly don’t know what to say that hasn’t already been said, but just, I suppose, to let you know that one more person is holding you and your family in thought and prayer. You really are in my heart.

    I have friends in the Northumbria Community who are regularly praying for Ben. I will try and get them a link to this blog.

    Take care my dear dear friend, not only does the Father stand with you in this time of trial, but your friends, your sisters and brothers, and ARMY of support the world over, from continent to continent stand with you! x

    Liked by 1 person

  10. Dear Catherine and Jeremy, As I pray now I am even more moved, and in earnest that grace, love, and comfort reach you through this immense suffering,bringing ease and solace, and that an enlightened approach to Ben’s diagnosis may yet emerge that enables more light moments and lifts hearts. Just now adding my voice to these collective prayers and the deep holly communion that arises.
    In homage to your bravery and strength as a family.
    Yours truly,
    gail

    Liked by 1 person

  11. Dear Jeremy and Catherine
    What can we add to all that has been said? But we want you to know we hold you in our prayers day by day. This scripture came to mind after reading your news.

    Yet I am always with you;
    you hold me by my right hand.
    You guide me with your counsel,
    and afterwards you will take me into glory.
    Whom have I in heaven but you?
    And earth has nothing I desire besides you.
    My flesh and my heart may fail,
    but God is the strength of my heart
    and my portion for ever.
    Psalm 73:23-26

    Liked by 1 person

  12. Praying for you at Trinity church

    Liked by 1 person

  13. Peter and Alison Turnpenny said:

    Dear Jeremy and Catherine,

    We have been following your blog with our prayers for you and your family. Is there anything we can do?

    With our love and prayers,

    Peter and Alison

    Sent from my iPad

    >

    Liked by 1 person

  14. At times like this, my human instincts think it would be lovely to wave that magic wand and everything be better.
    God however does not use a wand but instead offers himself as a miracle, walking with you in your pain, sweating tears of blood and loving you as his special creation. He says, I will never leave you or forsake you.
    I continue to pray for you, Catherine, Ben and the whole family, that His love surround you and yes, that a true a God miracle does happen with no more itches and pain. God bless you all.

    Liked by 1 person

  15. Kaye Saunders said:

    Dear Jeremy & Catherine

    We continue to uphold you all in our prayers and we pray for a miracle for both Jeremy and Ben.

    God bless & love

    Kaye & Chris

    Liked by 1 person

  16. John & Val said:

    Dear Jeremy & Catherine,

    Praying for you all everyday your faith is an inspiration to us all.
    May God richly Bless you & hold you his loving arms.
    much love. x

    Liked by 1 person

  17. Michael Hawkyard said:

    Dear Jeremy,
    You probably do not remember me, from St.Mary’s, Upton, Wirral. It’s a long time ago now, and a lot of water has gone under our respective bridges,
    For me, after close on a decade of heartache from several sources I am now very happily married to a lovely human being, Su, who is a great example/icon for me, always working to strengthen my faith.
    For you, life has dealt an awful blow.
    I can not find adequate words to express my sadness at your situation. I was told by Tim Pugh, another ex St.Mary’s man. We both attend URC, West Kirby now. He sent me the URL for this site.
    It does sound trite to say you are in my thoughts and prayers. There seems so little else I can do.
    God bless you and watch over you.
    Michael Hawkyard

    Liked by 1 person

  18. David Williams said:

    Dear, suffering, trusting and courageous family,

    Thank you for continuing to write, in your pain, to build up and nurture us all week after week.
    Ruth and I send you all our love and assure you that we pray on !

    Liked by 1 person

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