There is a crack in everything

For those who are interested, Kristian’s celebration can be viewed at:

I miss him every day.

Rachel

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The following is Kristian’s final blog, posted after his death. It was posted by his wife, Rachel after he had an inkling it was his time to go.

How the light gets in.

As I mentioned at the start of this journey it’s a Leonard Cohen lyric. The truth being we’re all broken, we’re all cracked and what so many people see as a fault or a malfunction really is something to be considered useful. I’m not sure how much longer I have left but it appears that the physical and medical signs are all pointing to my end.

And, what a great time to go, right at Christmas-time.

Just wonderful.

The time my Saviour was brought into the world is the very same time he decides to call me home. The irony is astounding.

While I struggle to find any logical rhyme or reason in all of this my commitment to following Him has not changed. People look at me like I’m crazy. How can I trust God to deliver me from this madness, when this madness means losing my wife and two beautiful children? And the answer is, I simply don’t know.

It’s the light that permeates the brokenness. It’s the light that the three wise men followed that night when Christ was born. It’s the light that just came to be when God said: “let there be light” on the first day of creation. It’s unexplainable. And as I said before even though it makes no sense, I will follow it until my very end.

It’s the light that shines for every man and woman, and thankfully it shines for me, lest I be lost in the darkness that surrounds me without it.

Thank you for journeying with me this far. I pray you find the same peace I have.

Kristian went to Heaven on 2nd of January 2012, just after 8am at Manly Hospital. His passing was truly peaceful and he had a tear in his eye as he left, and I have no doubt that he was looking on the face of Jesus.

Please check twitter @rachelacj or @krisPA for funeral details and times. We are also planning to have the funeral webcast live for those who are unable to attend.

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It’s been a while now since my prognosis was updated from ‘treatable’ to ‘terminal’.

We’ve prepared as much of our lives as possible for the (medically) inevitable. Our parent’s and friends have been a great help in getting this rolling, flying in from Perth and Auckland. Physically we’ve had to sort through 3 years worth of stuff in storage. Electronically it’s been getting all finances and authorisations sorted and flowing into the one right place. That’s nearly done except for a couple of small things. But otherwise we’re on track.

I’m being visited every day by NSW Home Nursing so a nurse can drain my stomach port to bearable  levels. They’ve also given me a wheelchair, which is very handy as I can’t walk without becoming breathless or exhausted after a few steps. My stoma/bowel is incredibly active and quite tender as a result so that’s been added to the pain management schedule. Yes, I have a ‘schedule’ for managing my pain. The first few weeks were trial and error but now we seem to be settling on a preferred treatment style that the palliative oncologist is happy with. In his mind, pain management is key… if I’m not comfortable then he’s failing, he says.

Anyway…. the drugs really alter my perception of reality. They also severely diminish my ability to actually use my body other than for standing up or laying down. I really hate it.

I feel so much less than human but there’s nothing I can do unless I want to leave this earth a bawling mass  of pain. That doesn’t really sit well with me either so…. excuse me while I go back and put my zombie outfit on.

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The other night I was helping Rachel put the boys to bed, as we do, and I was cuddling up to Jakob in his bed. He loves to tell me all about his day and what he did. It’s very cute. I began to test the waters with him and told him that Daddy will always live in his heart, no matter what happens. He looked at me and said “In my heart? Oh. Ok.” Then we tested it a few times… where will Daddy live?

Jakob: “ummm…. kindy?”

Daddy: “Noooo…”

Jakob: “In my heart?”

Daddy: “Yes, that’s right. So even if I have to leave I will always love you and live in your heart. Sometimes people have to go away and can’t come back, like when they’re very sick.”

Cody walked in at that exact moment and got very angry. “NO!” he shouted. “YOU CAN’T LEAVE!”

“Why are you going, and why can’t you come back? There’s only one Daddy for a family and you’re our Daddy….and…. and… You can’t go!”

He had tears running down his cheeks and the look on his face was pure fury. He was angry.

At that point I couldn’t contain it anymore and collapsed in sobs. We talked it through a bit more and then we prayed with them. Pretty soon they were asleep but it wasn’t easy.

Somehow I have to help my boys understand what’s coming.

Dear God, no father should ever have to do this.

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It’s been a very hard few weeks. The SIRT recovery is continuing but not without it’s own battles. The exhaustion is extreme and the night sweats and fever are very unpleasant. But I’m getting there. I have been in hospital for the past week with a case of pneumonia. Not an uncommon side effect of the SIRT but enough to put me in a hospital bed for a week. While I was there they found I had fluid in my stomach which is why I have been bloated lately. It has been drained but it indicates a possible significant deterioration in my condition. If my stomach fluid isn’t draining then it means something is blocking the drains. In my case, as a cancer patient, it usually means it’s being blocked by cancer cells.

Which leads me to my updated prognosis…

On Saturday my Oncologist sat down with myself and Rachel and told us I have 3 to 6 months left to live. I’m not responding to any of the drugs available to me anymore. To continue might bring minor results but the painful side effects would far outweigh any curative benefit. Living life is one thing but the quality of that life is important, too.

It was awful. It was like we were right back at Diagnosis Day all over again. I was devastated because it means all my hard work, all my fighting has really been for nothing. We’re nowhere near remission and certainly nowhere near a cure. Heartbreaking.

So Rachel and I spent a lot of time crying and hugging each other and telling each other how much we love the other….  both of us… our hearts shattered again.

So here it is now… my days are numbered. Unless God intervenes and brings a miracle I am going to die. Rachel will become a widow and Cody and Jakob will have no father. I’m in the process now of writing a book for them with photo’s and letters… full of memories and anything I can pass on to them that may be of use as they continue living their lives. Winding up loose ends, financially making sure they are taken care of, etc. I have to do these things. To leave them undone would be irresponsible and unfair on Rachel. It’s going to be hard enough as it is.

Please pray for us, as a family… for me as an individual… for healing, for the miracle.

I haven’t stopped believing.

I never will.

“Though He slay me, yet will I hope in Him.” (Job 13:15)

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Tomorrow will be one week since the Spheres procedure. I knew I would need a certain amount of physical isolation for a few days and seeing as how it’s school holidays we decided Rachel and the boys should go to stay with her parents in New Zealand. That way they’re protected and I don’t have to move out of home.

They’re having a great time. It makes me very happy.

So I’m sitting/laying at home while the side effects take over. The pain I remember from the first time, the fever, the chills, the sweating that makes me have to change clothes multiple times in the middle of the night. But more than anything, the pain. I have good pain meds but still it pierces through. I feel the heat of the radiation on my skin. I feel bubbling, popping in my liver and at times the exhaustion is so bad I feel like someone has literally kicked my legs out from under me. I have had to steady myself against a wall a number of times while making the 20 foot walk from the lounge to my bed. It’s frightening.

But the physical pain is nothing this time. What’s really hurting is the not knowing again. The 3 month wait until we know how successful it has all been. And what worries me is that last time we suspended chemo while the radiation did it’s thing, which was a welcome break, the tumour in my bowel began to grow and of course we remember what happened at Christmas.

But the most painful thing of all is walking past the boy’s bedroom door and seeing their empty beds. Cody with his dinosaur blankets and Jakob with Thomas the Tank Engine. And I walk down the hall and there are photo’s of their beautiful little faces, smiling out at me. And there’s new photo’s Rach is sending me from NZ… and so right now I’m sitting here weeping so hard i can barely see. Sobbing so deep it feels like my stomach will explode. Because all of this is because I love them so much. All of the treatment and everything else that comes with it is so I can stay alive for them.

GOD!

Save us!

Save our family. PLEASE! Save me.

Take this disease from my body and this pain from my heart, from all our hearts.

I don’t know what else to say…. God, please help, once and for all. My heart is breaking more and more, every day. I don’t know how much longer I can take this.

Rachel, Cody & Jakob…. I love you so much. I wish I could show you just how much.

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