Tuesday 5 December 2017

Finding God in the Waves

There seem to be a lot of spiritual analogies we can learn from water. This week I have been thinking about a few verses in Job. Job 38:8-11 says, "Who kept the sea inside its boundaries...For I locked it behind barred gates, limiting its shores. I said, 'This far and no farther will you come. Here you proud waves must stop'." 

Waves can be gentle, but they can also be violent, powerful and thundering. When you look at them they appear unstable and out of control. Yet every time a wave crashes it returns to where it came from. (OK, so I'm not talking about tsunamis). No matter how big a wave, there are limits on where it can go. Somehow when it seems out of control, there is total control.

So often when difficult things happen in our lives, it feels like things are out of control and that God has lost control. However, even in the craziest of times in our lives, like the waves,  God has total control. I have been amazed that although Joshua has had cancer, at the same time he has been his usual healthy self. The cancer aside, he hasn't really been sick. It feels like God has said over his body, 'this far and no farther will you come'. The cancer was something totally out of our control, but at the same time the way Joshua coped with treatment showed me that God was totally in control. Like the waves, God puts parameters in our lives. He allows certain things and we may feel buffeted and frightened at times, but it all happens within God's complete control.



Monday 27 November 2017

Schools out!

It's that strange time of year again in Australia (at least for those of us who went to school in the northern hemisphere) where we are heading into the summer holidays and the Christmas holidays simultaneously. If you've been conditioned into feeling that these are two separate holidays it feels very odd when they merge. Clearly it's not wrong, it's just different, but there's a lot to get through when you have to celebrate the end of the school year and Christmas things at the same time.

Joshua returned to school on Friday for the last day of term. He is quite bemused as to why, when he is fine, everybody keeps asking how he is feeling. There is now a two month summer/Christmas holiday before school starts again at the end of January - happy days!!!!

An uneventful week medically. We got the dates of Joshua's next five scans at the hospital and a letter summarising everything he has been through.The words I liked the most were, 'complete remission', 'excellent prognosis' and 'complications nil.' Much nicer than bilateral bone marrow biopsy and intrathecal chemotherapy.

Two exciting things happened this week, or at least they were for the individuals concerned. Ruben visited the prep class where he will start next year full time. Most excitingly for him, he was given a little joey (not a real one, that would have actually been exciting and possibly illegal) wearing it's own school uniform and a book telling the story of joey's first day in prep.

Very excitingly for Joshua he took and passed his driving theory test, which enabled him to get his provisional driving license. He now has to drive for 100 hours (not all at once) before he is allowed to take his practical test. The good thing about Australia is that it is so big, if you have the time it is easy to clock up the hours. Road trip here we come! It's a 32 hour drive to Melbourne, so there and back would help the hours in the log book. I am also going to have to learn to drive properly again - sigh! I started driving an automatic in Nairobi and haven't looked back. Most of the larger cars here are automatic, so that's what we have. I'm definitely a little rusty when it comes to using the old gear stick. 

Sunday 19 November 2017

Fishing

Joshua's hospital appointment was fairly uneventful. They checked him over and told him to come back in December. It was strange to see the doctors from Lady Cilento braving the far north of the country. For one of them it was his first visit to Cairns. As far as updating on Joshua's condition, this blog will hopefully become fairly uneventful. Compared to the intensity of the last few months we are back to the humdrum of normal life, most of which is not that blog worthy. I don't think you really want to hear about my visits to the supermarket, exciting as those can be! Stone fruit and mangoes are now in season and Bunderberg soft drinks are now selling their Christmas spiced ginger beer (see, not that exciting).

People keep saying to us how pleased we must be to all be back together and again and in Cairns. Of course we are and we politely smile and agree, but to be honest it's quite odd. The last few months have been very intense and now we are back to 'normal', I'm not sure what to feel. We probably need time to process our emotions, most of which we put on hold in order to 'hold it together' during the treatment. Cancer has been our focus, now we have to remember what we did and how we spent our time before. It was only a few months, but it feels like a lifetime. Maybe we are still in shock. There is definitely a gap between the way people expect us to feel now that it's 'all over' and the way that we actually feel.

When you receive the diagnosis you are numb and in shock and then you go into survival mode. You get through one day at a time. Finishing treatment possibly is the start of the release of all those unresolved emotions and feelings there was no time for during treatment. We are now part of a club that we never expected to join - the cancer club. I guess it is just something we will have to work through!

Normal life involved fishing on Saturday afternoon/evening. Here are a few photos.










Thursday 16 November 2017

All quiet on the eastern front.

All quiet here on the east coast of Australia. Joshua has been home a week which has been fairly uneventful. Today he has an appointment at the Cairns base hospital to see the team from the Lady Cilento Children's Hospital, who have flown up here for a remote clinic. 

In theory he could go to school, but the teachers have agreed that as there are only two weeks left of school, he can do work at home that he needs to do to catch up. He may go in for one day next week to see his friends.

It was the Presentation Evening on Tuesday. I went for a short time with Joshua and Ruben just to hear Bethany sing the national anthem. Josh sat with his friends, which was really nice until I felt it was time to make a quiet exit! Imagine a semi-dark, fairly hushed room for a formal event, except I had Ruben sitting next to me huffing and puffing and saying in a not very quiet voice, "This is so boring". I whispered to him that we were going to go and needed to attract Joshua's attention, but not to shout. We managed this quite successfully until Ruben said in a very loud voice, "MUMMY SAYS WE ARE NOT TO SHOUT". Good job he can still pull off cute and people are forgiving!

What was really nice was that, in spite of his absence, Joshua was awarded one of the Grade 10 academic excellence awards based on what he had done that year already. Joshua felt he didn't really deserve it, but I was pleased.

Saturday 11 November 2017

We're Back...!!

Joshua and I returned back to Cairns at around midday on Thursday. Joshua was quite keen that it be a secret, which is why the blog has been so quiet! In the family, only Libby knew (although Bethany had a strong suspicion) so it was a nice surprise for the other two. This is Ruben's face when Libby told him...





After having his central line removed on Wednesday afternoon, Joshua was cleared to fly home on Thursday. His operation was much later than expected (around 4pm) and he had quite a lot of trouble waking up from the anaesthetic, but by the next morning, although a little sore, he was feeling well enough to come home. 



Having not been home for 3 months, he was pretty excited to be back again. The first thing he did was to go out on his bike! The most exciting thing was, 'unlimited wifi'...



It is nice to be all back together, although there is going to be some readjustment required to being all back together. It's surprising how quickly you get into little routines. It is also going to be a bit hard getting used to the things that were hard before this all kicked off. 



In some ways, being in Brisbane was a bit like being on the field. We had a simple little house, which required relatively little cleaning, no house maintenance and no garden maintenance. We didn't have much stuff, much in the way of responsibilities and nothing to do or think about other than eating and getting on with the important things. 



It is quite hard to have to come home to a house that has a white floor and needs constant cleaning, lots of grass that needs mowing and shrubs and trees that need pruning and trimming, other projects that need doing, cars that need maintaining, etc. First world problems I guess! 



Anyway, it is good to be back together - now just to get used to it again, and maybe tackle some of those life issues that have been on hold for the last 3 months. 



Thank you to everyone for their prayer and support during this adventure. 









Friday 10 November 2017

The Bell Tolls

What a lovely sound, not the sound of the bell itself, but what it signifies. The end of cancer treatment. On Tuesday Joshua had the privilege of ringing the 'ringing out bell' and signing his name on the board to show that his treatment is finished. It's been a roller coaster of a ride, but we are so proud of how he handled the treatment and got through to the other side. Of course we are not quite done yet, and we have months if not years of scans and x-rays and blood tests to come; hair to grow back; blood levels to normalise, energy to get back, strength to return, but we have come a long way.








Do I understand why this happened? Not really. Mostly I have come to terms with this, although I have moments of still asking why this happened to Joshua. There are little griefs; like realising that he will not be able to get any academic awards next week at school, when in past years he has swept the board. Also, just having a kid that looks like a 'cancer kid'

Early on in this, God gave me a few verses for Joshua. One was in Exodus 14:4 which says, "I have planned this in order to display my glory". I have no idea how this will play out but I pray that this will be so. Later on it talks about how the Lord opened up a path for the Israelite's, so that they were able to walk through the water on dry ground. I feel that God opened up a path for Joshua and he was able to walk through his chemo treatment. Joshua's consultant said that he has never had a patient go through the chemo schedule that Joshua has gone through without any infections, transfusions or other complications. For me, that has God's hand written all over it. The final verse in Chapter 15 says, "...for I am the LORD who heals you". Amen.

For those of you who read this blog and don't have a faith, I so encourage you to investigate. I don't know what you think about it all, maybe you think it's OK for me if that's my thing or it's an emotional crutch to help me through hard times. Faith is complicated, I don't have all the answers and I certainly have a lot of questions and a lot of things I don't understand. One thing I am sure about though, is that there is God out there who loves me and cares for me. We can have sucky days, months or even years in this life, but to all of us God offers the gift of eternal life that will be beyond our wildest imaginings! Don't miss out.

Saturday 4 November 2017

Days trundle on...

Still not much of note to report. We have spent most of the week working and studying - partly school, partly driving theory. The pause button on Joshua's life got pressed in August - so time to hit 'play' again...

We were at the hospital yesterday for an appointment with the consultant, bloods and line care. Joshua's platelets have hit the lowest point so far, but his white cells and neutrophils are on the rise again. More tests and appointments next week, but for now it is still a waiting game.

We are trying to keep ourselves amused. Yesterday after our hospital visit we wandered over the Goodwill Bridge to visit the Architecture Department at Queensland University of Technology, which is likely to be one of Joshua's top picks. 840m from the hospital as the crow flies - I can't help wondering if this is not a coincidence...

We had a good time. On the ground floor the students (I assume) have built a scale model of the centre of Brisbane. We also visited the workshop where there have all the laser cutting machines for making the models. All pretty cool...






This morning we went for pancakes at the hospital. Every Saturday volunteers from the Children's Hospital Foundation have 'Pancake Saturday' in the Ronald McDonald family lounge on Level 6. I went a couple of weeks ago when we were in hospital, but I wasn't allowed to take any pancakes up to the ward. Last weekend we went to the hospital especially to get pancakes, but due to a combination of leaving late and some event at South Bank that meant there was zero parking, we missed the slot. So we tried again...and they were pretty good 👦



After that, we spent two and a half hours playing Mario Kart on the Wii  U in the Starlight Room. Joshua is trying to make up for lost time..
.

(Joshua is not quite as bald as the photo would suggest - for some reason my phone can't see his hair 👦) 

Sunday 29 October 2017

Random selection of photos that haven't found their way on to the blog yet (possibly)...

Ruben sleeping peacefully in his own bed - first night back of our short holiday in Cairns

Mr Innocent enjoying the Lagoon during our holiday in Cairns

Joshua & Ruben at the Brisbane Museum

Hulk

Tiger

Lion (unimpressed...)

Baboon painted as a Caleb
(or the other way round, I forget...)

Boys enjoying a brief downpour

Joshua's initials on the car in front...what's the chances? 

Caleb & Bambert
(if we haven't blogged about that, remind me to do so sometime in the future)

Lion (more impressed, and more impressive...)

Saturday 28 October 2017

Still in Brisbane

Sorry for the lack of updates, but not much is happening! Joshua and I (Daniel) are still in Brisbane waiting for clearance to depart. We went and saw the doctor on Friday and for bloods and 'line care'. He is pleased with progress and predicts we should be able to go home the week after next, which will be VERY nice! I think our hearts have grown fond enough for now, and we are quite ready to end this absence...

So in the meantime, I am working and being a 'house-father', and Joshua is mostly eating, watching and working on his various craft projects. After our hospital trip yesterday we wandered down to South Bank and got 'The Donald Trump' from Burger Urge. Joshua has had his eye on it for the last couple of months. It almost defeated us, but we managed to subdue it between us in the end...




The good (mostly) news is that our consultant is happy for Josh to have his monthly follow-up appointments (for the next year) in Cairns. He will have the usual chest x-ray and ultrasound, and the results will go down to Brisbane. So our understanding is that we won't have to come to Brisbane ourselves unless the tests show something untoward - which our doctor doesn't expect. So that is convenient - although Joshua is a bit disappointed that the government won't be paying for him to come and have some holiday time in Brisbane while he is well...

Tuesday 24 October 2017

Out of hospital

Hooray, Hooray, Hooray, Joshua finished his chemo today and went home from hospital. 

Joshua on the way down to his final LP

As it was his last round of chemo, the nurses let him rub his own name off the board: 


In a few weeks he will officially be able to 'ring the bell'. Not sure if I mentioned it before or not but the Oncology Department at the Lady Cilento Children's Hospital has a 'Ringing Out' bell for children who have completed treatment. We are so blessed to be able to ring the bell after only a few months - some children never get to ring it, or only get to ring it after years of treatment. Due to the nature of the cancer that Joshua had, the treatment was hard but fast.

Now it's just a waiting game. Joshua's blood results today are already pretty low so please pray against infections in the next few weeks. The sooner his bloods recover the sooner he can come home.  


Monday 23 October 2017

Back in Cairns

Joshua is now into day 6 of his 7-day hospital stay. Pretty boring really as he's not allowed to leave his room due to the risk of a chemo spill. Tomorrow around lunchtime he will have all his chemo lines disconnected and at some point in the morning will have his last lumbar puncture. Then he will go back to the accommodation to recover. Usually the worst days are between day 10-16 of the cycle and then his bloods should start to be on the up. He will still be at risk of infections while his immunity is low so please keep praying for these final few weeks. Daniel has just been talking to the nutritionist about what to eat to make the process as quick as possible. Please pray for Joshua's appetite to recover quickly so we can start stuffing in all those good foods! 

For us in Cairns it feels pretty strange that we are here and Joshua is still in hospital. It was so great to get the scan result, but I will feel much better when Daniel and Josh are finally able to come back to Cairns. That will be a very exciting day.

The other children went back to school on Friday. I was thinking that they would have Friday off, get used to being back and then start again on the Monday, but there was no stopping them. Even Ruben was up and dressed in his uniform ready to go to Kindy. They are all thrilled to be back and into their normal routine. 

Bethany's informal was apparently 'awesome'. Good job really as we had made quite an effort to make it back here on time! 


Friday 20 October 2017

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



Wednesday 18 October 2017

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.

Tuesday 17 October 2017

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. 

Monday 16 October 2017

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.


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Saturday 14 October 2017

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? 

Wednesday 11 October 2017

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.”