The boys wanted to put the Christmas tree up to celebrate Daddy’s birthday. I think we might make this an annual tradition. They were so proud of their effort.

Hi everyone,

I’ve been thinking for a while now that I should really post something to let people know how my boys and I are doing. So, here I am.

It has almost been five months. Five whole months. I honestly thought things would be getting easy by now. Particularly because the first days and weeks were so, so hard. But the truth be known, it’s still just as difficult now as it was back when I first lost him. The reality has truly set in. I miss his voice, his smile, his compliments to me in the mornings once I’d dressed for work, his companionship, his hugs, his spaghetti bolognese, his fettucini and prawns, his laugh, sharing stories of the boys with him. I miss watching him be a Daddy. I hate doing this alone. I don’t know why he had to go. I know God has it all under control, but it doesn’t make the day to day business of living any easier.

Cody and Jakob are doing incredibly well. They miss their Daddy all the time, but they are so resilient. Cody loves school and is growing so tall. Jakob is such a funny little guy with such a sensitive streak. I love them so much and am so, so proud of them every day. They are the reason I keep putting one foot in front of the other, and try to keep functioning. They ask a lot of questions about Daddy – why he had to die, what is he doing in heaven but they have bounced back amazingly well. I am so grateful for all the prayers people are praying for us, as I think that is the reason my little chickens are doing so well. Thank you so much.

It is so exciting to have had Kristian’s blogs published. I am thrilled to have in hard copy his journey, which I’ll be able to give to the boys to read when they are older and ask what it was like for Daddy when he was sick. They will be able to read in black and white about how hard he fought for them. How his faith in Jesus never once wavered.

Thank you for praying for us. Thank you for thinking of us. Thank you for believing we will be ok.

love Rachel

Both boys love Star Wars. I think it’s because it’s a tangible link to Kristian. He’d be laughing if he knew how often I had to watch it (before he died I’d never sat through even one of the movies!).

We found our book for sale at a bookstore at the airport. Just a little bit excited!

I miss him every day.

Rachel

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.

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.

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.

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)

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.

The Doctor’s were able to head off a couple of potential leakage issues (as I understand it, anyway) and are very happy with the way things went. The way it’s all worked out is even safer than last time and we’re expecting good results.

Strangely enough, I don’t remember much of the procedure after the local anaesthetic went in and I felt the first little creepings of the catheter into my groin. Perhaps it’s the time between treatments or just the fact that I have developed a pretty high tolerance for pain and discomfort over the course of two years worth of chemo, but it was nowhere near as bad as I remembered it. I mostly remember smiling as they discovered my body has apparently grown a second Hepatic artery since last time. I will investigate this strange little phenomenon and find out exactly what it means, or even if I heard it correctly…. but it sounded like everyone thought it was pretty cool.

One other good thing to come from today was that they found a few more smaller tumours on the liver that the PET scan missed. So, they’re going to be targeting those as well. Nobody gets a free ride on my liver.

All in all it was a good day…. so many familiar faces and all of us happy to see each other again, even though the circumstances are so serious. There was a real sense of old friends getting back together. It’s also the first day in quite a while where I haven’t felt the compulsion to eat. I’m weaning myself off the Dexamethasone this week and it appears to be helping on the food intake side of things. It will be nice to get back to a non-ballooning and more stable weight range.

I’ve been given permission to take a camera crew in next week to film proceedings. It may take me a while to edit it all together but quite a few people have asked what the procedure is like so I figure this will be a good way to show you what happens.

Thank you for the support, everyone. It means so much to us.

Talk soon.

Some are there for comfort, some are there to fight.”

When I was younger I was fortunate enough to work on a lot of concerts. Rock shows, theatre, church gigs and stinky, smokey pubs. It’s where I learned my craft. One show in particular was with a band named DC Talk at the now derelict Perth Entertainment Centre. The quote above is from Kevin Smith, one of the singers from the band.

I just got the call from the hospital and the test implant or “workup procedure” is confirmed for tomorrow. From 7:30am to around about 5pm Sydney time I will be under live X-Ray, CT Scanners and Gamma Cameras as they track blood flow and a dummy “tracer” particle, to see where it all goes and if my body’s blood vessels are still wired the right way to withstand the SIRT.

As much as I need this treatment, it requires a strength that I personally do not possess on my own. I’m pretty fragile right now, emotionally speaking.

I know what’s coming tomorrow and as much as I have said I will do anything to continue this fight, the thought of what lies ahead is daunting. I know the discomfort that’s coming. I know that for three hours afterwards I am going to have to lay perfectly still in recovery so the puncture in my Hepatic artery can heal. I know that about an hour before I am discharged Rachel and the kids will begin their journey to the hospital in peak hour traffic to come and pick me up. I know that when I see them it’s going to be a struggle to maintain my composure and not burst into tears. Tears of relief, tears of weariness. I know that Cody will probably remember last time he was there with me and that I bought him and Jakob a “special chocolate cake” from the cafe.

I hope I have the presence of mind to remember to get him another one.

I’m afraid. I am.

What if my “wiring” has changed? What if the answer is “no, it’s not safe”? The people administering this procedure have done it over 450 times before. They know what they’re talking about.

What if?

What if?

What if?

God, I know I said “be it unto me according to your will”…. and I stand by that. I’m going to be walking those corridors again tomorrow and I’m scared. All I’m asking is that you meet me there, the same way you did nearly a year ago.

In you there is no darkness, because you are light.

Scatter the darkness, God.

Bring light.

Bring life.

I’m aching for it.

I’ve been in three countries, shot a music documentary with one of my favourite bands, made new friends and had a whole bunch of medical tests.

It was Jakob’s birthday this week, too. He turned three. I was diagnosed when he was just one year old so he’s only ever really known Daddy to be “a bit sick”. Seeing his face light up as he opened his presents reminded me why this fight is so important. You can do whatever you want to my body, to my mind… but you will not see me give up this fight. For the sake of my children, if nothing else.

My cancer markers have been climbing steadily since we came home from our holiday, that upward trend we so don’t like to see, so a PET scan was ordered. My first since diagnosis. It doesn’t get more detailed than a PET scan and I was happy to have it done so we could find out what was going on inside of me.

My biggest fear was that the cancer had jumped to another part of my body.

After an anxious weekend awaiting the results it was determined that, thankfully, we’re still only dealing with the liver tumours. There are four of them that showed up black on the scan. Black indicating blood flow and activity. Two at the top of my liver and two at the bottom. Basically, they’re really misbehaving. There was also one small tumour that appears to have ‘dropped’ from my liver to my Psoas muscle, which is located in the pelvis. The doctors seem to think this will be easily eradicated by some targeted radiation, so it will be monitored.

And that’s where I’m headed again….radiation… SIR Therapy.

I was hoping it would still be an option as I had heard it could be a once-only type of thing due to it’s potency, and as you may or may not recall I had a pretty hefty dose of it in November 2010. Thankfully the team at St. Vincent’s Hospital here in Sydney were a) very happy to see me and b) in agreement that it would be possible and we should get it underway as soon as possible. I’m scheduled to go in next Thursday for the ‘work-up procedure’, which is where they do a test run to make sure the blood flow is all correct and not leaking anywhere outside of the liver. Then, if that’s all ok it’s the real procedure a week later.

I know it’s probably going to sound odd but driving home from the hospital after being given the green light was not without it’s emotional moments.

I was elated.

I had walked in that day not knowing if I was going to be able to have another shot and within one hour was driving home knowing that not only was I going to get another chance but that the Doctor’s believed the outcome could be very effective at knocking off these problem tumours. It was really quite overhwleming…. I have another chance.

Another chance to fight.

Another chance to live.

Another chance to celebrate the birth of my children.

Another chance to see another Christmas.

Another chance to wake up in the morning and see my beautiful wife laying next to me.

Another chance to be reminded of the grace of God that covers me daily as I walk through this seemingly endless valley. The neon lights that are His promises to me, lighting up the darkness, showing me the way forward when all other light fails.

This is surely the hardest, most intense set of circumstances I have ever faced. It’s been two years now of non-stop treatment and I am weary. It’s taking it’s toll on me and my family. It’s war, make no mistake. But I am ready for it. I have been to this particular battlefield before. I know the lay of the land and I have a strategy that is proven and effective. Smith and Anderson will face off here once again. I’ll take a beating, but I know Smith is going to come off second best.

I was made for this.

Life is calling loudly to me. It’s not the way I imagined my life would pan out but I’m here, armoured up and ready to roll.

Just you try and stop me.