Back to Cairns

Yesterday was rather hectic. I spent Wednesday night at the hospital with Joshua and then flew to Cairns on Thursday afternoon. However it was slightly fraught as Joshua had a lumbar puncture under general anaesthetic, which he went into quite early, but then didn't resurface for a long time. He'd been given a larger dose of anaesthetic to keep him still, which meant it took ages for him to wake up. By the time I was allowed into recovery it was getting quite close to the time that I had to leave. He was technically awake and his obs were good but he was pretty out of it. We were waiting for him to be transferred up to the ward so his siblings could say goodbye but after 40 minutes of waiting for a 'wardie' (porter?) the nurse and I decided we would push the bed ourselves. We got back to the room with only a few minutes to say goodbye to a very sleepy Joshua. Then it was back to the accommodation to get our bags, and straight to the airport in the taxi I had booked two minutes earlier.  While we waiting at the gate I realised I still hadn't got around to brushing my hair that day, I probably looked as ragged as I felt!

A slightly bumpy flight back to Cairns, sitting next to a guy discussing farming on cattle stations and we were home. (I seem to be having these discussions a lot recently).

We were picked up by the wonderful Christie Giles who also gave us dinner. It was lovely to be in our own house, especially as my bible study group had bought me flowers and cleaned the house. 

The lovely welcome was somewhat dampened (literally) when I woke in the middle of the night to find a huge leak covering half of my bedroom floor. As I speak the plumber is trying to get to the bottom of it and has ripped up the bedroom carpet. The morning was spent rushing around Cairns looking for a mask for Bethany's school 'informal' (Like a prom but less formal - hence the informal!) tonight. The masks we bought in Brisbane we (Ruben...) helpfully managed to leave behind.

It feels odd to be back. I feel slightly as though I have been transported from one world to another. From the intense world of Oncology, that most people, thankfully, have not had to experience first hand, back to the normal world (where words and phrases like methotrexate, central lines, neutropenia, PET scans, and cytotoxic waste are not commonly used). I'm going to have to get used to having conversations with people that don't revolve around cancer and chemo protocols and talk about things like...actually what do 'normal' people talk about?!

Cairns

Brisbane

Final round

It's my last night in the hospital tonight. I came in with Joshua at 7:15am this morning so he could start his final round of chemo - they don't waste any time! I always forget about the hospital in the time we're out. When I walk back in the door again after a break, there is always a smell, not really bad or good, just a hospital smell that makes my heart sink. I guess it is the associations and the memories that smell brings that trigger the emotions.

In some ways, this round is easier because we know the end is in sight and in others ways it's hard because we feel like we're done, but we're not. It's hard to see Joshua go from, 'normal' energy levels to exhausted and lacking in appetite in only a few hours. For the interested medical people, this is the same as the last round. 4 hours of Rituximab, 3 hours of Methotrexate (with 72 hours of fluids to flush it out), 5 days of Cytarabine and two lumbar punctures.

Although in many ways we are very fortunate because Joshua's treatment has been relatively short, it's hard to think that we won't be done with oncology for a long time. Before all this started, not having really thought about it before, I thought you got diagnosed, got treated and then you were done. It's hard to think that even after remission, there are years of blood tests and scans ahead, many of which will be in Brisbane. Apparently, oncologists don't like far north Queensland!

As an aside, I was feeling very unwell this morning with a migraine and was lying down on a small bench next to Joshua's bed with my eye mask on. (The hospital gig was easier in the big scheme of things than managing Ruben). After a few hours, I suddenly realised it was my birthday - I'd totally forgotten! (We had celebrated at the weekend so don't feel too sorry for me).

Tomorrow I go back to Cairns to try and find our new 'normal'. Lots of things have changed and I think I've changed. I definitely have a greater understanding and compassion for families dealing with cancer. I have had the opportunity to get an insider view of a world that I never gave much thought to before. Some people really have it tough. Not sure what I am going to do with that information yet, but I hope I can use it in some way to help somebody.

All clear

The post we have all been waiting for. After a lot of waiting, Joshua's PET scan showed that all the cancer had gone, what an answer to prayer. Thank you so much to everyone who has prayed and more importantly to our Heavenly Father.

Below shows the first and second PET scan. There are some areas of the body that show red anyway, like the brain, heart, kidneys and liver, and that's normal, all the other red is cancer.

So basically no cancer can be detected, but just in case there are any more microscopic particles, Joshua has to undergo one more cycle of chemo. He's not really looking forward to it, but it's a huge help that he knows the end is in sight. Please don't stop praying for him, he has another month of treatment to go. 

Strange and slightly surreal

I took Joshua in for his PET scan this morning. (No results until tomorrow). When we arrived, there was an old man in the waiting room (waiting for his wife who was also having a PET scan), who we briefly said hello to. I am allowed to stay with Joshua up to a certain point and then they kick me out. It's quite a long procedure, so I had almost two hours to kill. I went to get a coffee and then was debating what to do. I wasn't sure whether to go and find somewhere quiet to sit, but I somehow felt strongly to go back and sit with and talk to the old man. 

I went back and sat next to him (possible slightly weird) and we started chatting. We talked about a lot of things, the million acre property his family farms out west, his time serving in Vietnam where he got shot, his 7 children, his marriage and then he started talking about heaven.

At the moment I'm reading the book, 'Imagine Heaven' by John Burke' about near death experiences, so I got it out to show him. "I've had one of those", he said (as you do!) I was assuming it was after he was shot in Vietnam, but apparently this was a whole different experience. 

Until he was about 4 years old he was brought up by his grandmother, at which point, for reasons he didn't say, he was put into an orphanage. His grandmother was a Christian and prayed for him and taught him about Jesus - 'the great I AM'. Time passed and obviously life didn't pan out so well for him, and he found himself, at the age of 30, on the streets of Brisbane. He was in pretty bad shape, hadn't eaten properly in weeks and lay dying on the street. Whether it was actually a near-death experience, a vision or whatever, he said that while he lay there dying, a figure appeared to him. What was interesting to me, and what gave it some authenticity, was that his description of what he saw bore a lot of similarities to some of the experiences I had read about in the book. He talked of a figure in white, with lots of light and all this love emanating from him. He also talked about seeing a great city. Up to this point he had no idea what or who he was looking at. Then the being spoke to him and said he was the great I AM. He remembered all those years ago what his grandmother had taught him and realised he was talking to Jesus. He was told this wasn't his time to die and that God had plans for him. That was how he became a Christian.

More recently, about a month ago, he was in hospital with bowel cancer and had almost given up. The guy in the bed opposite had been in a big car crash. He tried to share the gospel with him, but the man was verbally abusive and had no interest. However, during the night a figure appeared at the end of the old guy's bed (sorry, I don't even know his name) and told him that there was still work to do. To the disbelief of the man in the bed opposite, he also saw the figure. I'm not sure of the details, whether it was an angel or Jesus himself, but obviously he knew what he was looking at. He said he couldn't believe the old guy had been telling the truth and was greatly impacted. The old guy was moved out of that ward so had no time to take it any further, but felt at least a seed had been sown.

What was really nice was the man said that he knew there was something different about me and that after I left the waiting room the first time he had prayed for Josh. We spent nearly two hours talking (quite loudly as he was quite deaf) and reading bible verses. No idea what the rest of the waiting room thought, they probably thought we were religious maniacs - talking about the end times, the blood of the lamb and the great cloud of witnesses!! Still, it was a very encouraging way to spend the time. If he hadn't had a wife having a PET scan I would have wondered if he had been an angel!

For those of you who are interested, our church in Cairns is doing a series called Imagine Heaven based on the book. Click on the link if you would like to listen, its very interesting.

Another day in the valley!

Some days it seems really easy to have strong faith. I play worship music because I enjoy it and the upbeat songs reflect my mood. Other days, for no apparent reason, faith seems so much harder - I feel like I am hanging on by a thread, and I play the worship music because I need to hear the truth of the words. 

The last few days Daniel and I have been feeling pretty low. There is an undercurrent of tension in our house. Joshua's scan on Monday seems to be hanging over us. We still have faith but we are battling through the feelings of uncertainty and the emotions that come with it. 

Please pray for Joshua on Monday and for peace for us as a family as we go through this.

It says in Psalms that we should praise God for his great love and for the wonderful things he has done (Psalm 107 v 8, 15, 21, 31). I seem to quickly forget what God has done in the past and start doubting, so this is a good exercise for me. I am thinking of the journey we have been on so far and how God has been with us. 

When we were in Cairns, I prayed that although I didn't understand why we had to go through this that I would see the 'fingerprints of God' in the situation. Things along the way that couldn't be explained apart from God, that would just reassure me that he was in control. Maybe other people don't need this, but I do. So many times different doctors and health professionals have said they are amazed how well Joshua is doing, and how well he is coping with the chemo. They say it's a very long time since they have seen anyone do what he has done, with the intensity and high levels of chemo he has received. Of course I rejoice for Joshua when I hear things like this but on a deeper level it is confirmation in my heart that God is holding on to him. Joshua has what he has and he is getting the standard treatment. We are doing what we can with his nutrition and things like that, but it is nothing special. The only explanation is that God is fighting on his behalf. I often pray that heaven's armies will fight for Joshua, that when his body can't fight for itself that God will take over and fight for him. I believe that prayer is being answered. 

"He calmed the storm to a whisper and stilled the waves. What a blessing was that stillness as he brought them safely to harbour." (Psalm 107 v 29 - 30)

Some more songs for those of you who like them:

Just Be Held by Casting Crowns
Sparrows by Jason Grey
Thy Will be Done by Hilary Scott and the Scott Family

Faith - Part 2

At the same time as thinking about faith in God whatever happens, I am grappling with how  that meshes with living with the expectation that God will and can heal right now, and with wanting to see the power of heaven on earth. Especially in times which seem to be very ‘end times-ish’, I long to see the power of God poured out.

John G Lake says, “The Church has been negligent in one thing...she has not prayed the power of God out of heaven”. Smith Wigglesworth says, “What this world needs is a return to a ‘show and tell message’ of the Kingdom of God”. Some people and some places do seem to do this. I’ve read two books recently including  ‘Sustainable Power’, by Simon Holley that share stories of remarkable healing. Why them? Why there? What is it about these situations that results in such healings? We know it’s God who heals, not a particular place or person, so why do these types of things not happen more often in more places?

What does faith have to do with it?

I read recently: 

“One of the more common things people tell me when I’m about to pray for their healing is, I know God can do it. So does the devil. At best, that is hope...not faith. Faith knows He will. For one who has faith, there is nothing impossible. There are no impossibilities when there is faith... and there are no exceptions”.

How does that fit with what Laura Story says that, “God’s primary desire is not to fix broken things, it’s to fix my broken relationship with him”? Joni Eareckson Tada seems to have a similar view. She is someone who you would think would have had something worth saying about the mystery of suffering, pain and healing. She was severely paralysed at age 17, then at age 60 she faced breast cancer. Even through these hardships she says, “Even though it seems like a lot is being piled on, I keep thinking about 1 Peter 2:21: "To these hardships you were called because Christ suffered for you, leaving you an example that you should follow in his steps." Those steps most often lead Christians not to miraculous, divine interventions but directly into the fellowship of suffering."

I want to be able to pray and see immediate results, but experience tells me it doesn’t always work like that. Does that mean I only have hope, not faith? 

PET scan

A really quiet week this week. Joshua had his usual check up yesterday and that's it for the week. His bloods were rubbish, as expected, but not bad enough to need a transfusion. Platelets were lower than usual - but that's probably from the different type of chemo. (I actually have no idea why the platelets are low, that's just my non-medical educated guess). He actually seems to be doing really well. Today he voluntarily got dressed and actually went down to the park to 'shoot some hoops' with Ruben. Amazing, since he has barely been out of his PJs since August.

Next week is the big week where we find out if all the chemo has worked. On Monday Joshua has his PET scan to see whether all visible cancer has gone and he is officially 'in remission'. If the scan is clear he will start his final round of chemo the following day and then will just need to recover from that before we are able to go back to Cairns. If not we will have to make a new plan. Please pray for this. 

I'm trying to be relaxed, but I know underneath I'm pretty tense. So much hinges on this. Primarily I just want Joshua to be well and not to have to undergo any additional chemo, but I also just want our whole family to be able to go home. After the scan, I have booked to fly back to Cairns anyway (leaving Joshua with Daniel) so the other kids can go back to their schools for a bit. They are so excited. I feel very conflicted - I am desperate to go back home and get the others into their normal routine, but I hate to leave knowing Josh has to stay in Brisbane. Knowing it's only for a few more weeks would really help.  

I guess that's where faith comes in. 

Christians talk about faith a lot. It sounds so simple - "Even with faith as small as a mustard seed you can move mountains". Maybe for some people it is simple, but I've always struggled with it. How can I have faith in a God who doesn't necessarily control and steer circumstances to the outcomes I think are the right ones? I want to have faith in a God who always saves, always heals, always protects and always stops pain and suffering in its tracks. That's the kind of faith I would like to be able to have. What do we do with our faith in situations where the healing doesn't come, the answers don't come and God is seemingly absent? We've all had situations where we were trusting God for something and he didn't seem to show up!

Google (obviously the absolute authority on everything and anything) defines faith as, "complete trust or confidence in someone or something". I quite like that. Faith is complete trust or confidence in God. Full stop. Not 'trust in what you think God will or won't do in your situation', but just trust in God and who you know he is. I think my faith is becoming more about trusting my God and who I know he is, rather than focusing on my circumstances. Of course I still pray certain ways and would like certain outcomes. However I think (hope) I'm finally coming to a place where I trust God enough to commit a situation to him and know that whatever it looks like, he will work it out and he's got it under control.

Mercy Me expresses it much better than I do:

EVEN IF

They say sometimes you win some
Sometimes you lose some
And right now, right now I'm losing bad
I've stood on this stage night after night
Reminding the broken it'll be alright
But right now, oh right now I just can't

It's easy to sing
When there's nothing to bring me down
But what will I say
When I'm held to the flame
Like I am right now

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone

They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone

You've been faithful, You've been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You're able
I know You can

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone

It is well with my soul
It is well, it is well with my soul

Songwriters: Bart Marshall Millard / Benjamin Glover / Crystal Lewis / David Arthur Garcia / Tim Timmons

“The song ‘Even If’ is incredibly special to me,” commented Millard. “My son Sam is 15 years old, and he’s been a diabetic since he was two. When you’re a parent of a child with any kind of chronic illness, these things don’t go away. You have a lot of good days, but some days you feel like you’re losing bad. I was in the midst of one of those bad days when ‘Even If’ was written. This song is a reminder to people in these difficult situations that don’t seem to go away. God was worthy long before any of these circumstances even showed up. It’s a foundation that was built long before those difficulties came to be. This song is a declaration to God that even if He went silent and never said another word, He’s still worthy to be praised, and He’s our greatest hope in the midst of the trial.”