Home, and preparing

This is the second hardest post we will ever write.

The Epstein Barr virus made a huge comeback, causing lesions of B-Cells throughout Kip’s body. The worst are in his brain.

The brain lesions caused swelling, which is impacting on his movement, speech and facial expressions. He hasn’t been able to walk for a few days.

The lesions are growing fast, despite the targeted treatment. Swelling is being kept in check by very high doses of steroids, but all of these haven’t worked well enough.

The only medication left to consider would cause massively more swelling in the brain, which would be fatal or at best highly damaging, with no chance of getting our Kip better.

We are heartbroken and out of options.

Kip has only a few days.

So, we are home. Far better to be surrounded by his loving family, in comfort. A bed set up in the living room.

Kip watches his favourite programmes with Millie. We spend mealtimes together. We can have a few visitors. Granny and Grandpa are here, his aunties and uncles can give him cuddles. Our dearest friends can be there for us.

There are no more tests and needles to be endured. No more being taken away from his home off to the hospital. We are treasuring all the time we have left, just as we have treasured each day of Kip’s life, every hug, every smile, every moment spent together has been beyond beautiful, he has blessed us so very much.

Kip, our beautiful, brilliant Best Boy, we love you so much.

18 thoughts on “Home, and preparing

  1. Thinking of you all during these difficult times and sending massive hugs and kisses to you all especially Kip 😘 😘 xxxx Here if you need anything 💕 xxxx


  2. Dear Sarah and Ed, profoundly sorry to learn of your sad challenge at this time. Thinking of Kip’s more bouncy, happy times, climbing up the challenging embankments, so happily, determinedly, with Sarah, on his way into St Mary’s nursery school, when Herman Jr attended there. May the good Lord give you strength. Miracles are possible. Blessings! Herman, Heather, Herman Jr.


  3. My heart is breaking for you all. Sending huge love and hugs and hoping that even in the darkest of times that you can take comfort in the knowledge that you created and have spent five years with this wonderful and inspiring little man.


  4. I’m so heartbroken for you all, Chris and I have followed your family’s journey from the very first post. And can’t even begin to understand how devastating this must be. Ed, Sarah, Millie & Kip, we are thinking of you all and think your family is absolutely incredible. X


  5. No words can describe how terribly unjust this is..Kip really is a true Hero..luv him and u all so much xx


  6. Verses from a praying friend for you all. ‘Fear not, I have redeemed you, I have called you by your name and you are mine.’
    Your name is written on the palm of God’s hand. God will be with you. Through rough waters, you will not drown, through the fire you will not burn.


  7. I’m so sorry to read this. I can’t even imagine what you’re going through. Much love to you all, we’re praying.


  8. I am so terribly sorry. Such precious time now for you all. All love and thoughts from Australia. Kip and your family have been an inspiration.


  9. I didn’t know Kip’s story until a friend shared this post on Facebook. I read your update and then felt I owed it to your brave little boy to read his story. I’ve sat and read your blog from the very beginning and I’m writing this now through tears. You will all be in my thoughts and prayers. Love Ann


  10. I don’t know you but I want you to know you are in my thoughts and prayers. So very sad for you all. Sending lots of love


  11. Am so sorry to hear this very sad news, I pray that God will keep his arms around you. Yes you have to remember all the good times you have had as a family. Bless you all


  12. May the Lord comfort and strengthen you all through this dark patch. I pray that God embaces Kip in his care🙏.

    Best Wishes from Liz, Lesley and Alex.


  13. I am in floods reading this. I treasure your words. And I am here with you, trudging through the pain and darkness with you as best I can.


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