We have been blessed by those that have stood the test of time with us all the way… encouraging, loving and supporting us and many will probably never know just how you have touched our lives. From the simple kind word from someone we had never even met, to the companies that gave us the grace we so desperately needed from time to time, to take extra time to settle bills, and to the foundations and charities that work tirelessly to give the children with cancer and their families some joyful memories and the people who have and who continue to pray for us – many of whom we don’t even know, including people who have sent us notes… In fact there are so many that have encouraged us in so many ways from surprising us with a meal to visiting or calling at just the right moment… including nurses, doctors, specialists, cleaners and administrators.  We thank every one of you from the bottom of our hearts and know you will be blessed. 

Our journey is not done but we have come far. It is only by faith and knowing that God is our only constant companion and that he will not forsake us that we remain strong and encouraged.  We continue to pray for Cameron’s complete healing and for the restoration of our emotional and financial well being and that all of our precious boys will continue to grow and learn from this journey.  We also pray that in some way this site may continue to help people struggling with similar challenges in their lives. Cancer devastates lives in ways that we could not have ever previously imagined.

We will continue to post updates after Cameron’s quarterly monitoring tests and occasionally in between if there is any relevant news we think you may be interested in. Thank you again and may God bless you all.

We talked with the Oncologist about the fact that Cameron was finding it difficult to explain to people and for them to understand what his current condition is, because it is not scientifically, or medically correct to classify Cameron’s cancer as being in ‘remission’ – because there is still a mass there, even though it is not active. I told her Cameron was already telling people he was in remission, because this was simplest explanation, so we all had a giggle and decided that ‘remission’ is what we are declaring and she gave us her blessing to do so, which felt like another positive step forward. 

She is hoping that this year will be boring for us – oh yes!  So the plan is quarterly CT scans and blood tests for the remainder of 2009 and a PET scan later in the year.  We can certainly live with this and we are so thankful to be coming out of this dark place and to know we can continue to grow in strength.  We thank everyone for their prayers and the many people who continue to support us in so many ways. Many of you may not realise just how much a kind word or supportive gesture, or even hug has helped us along this journey.  Thank you all. And most of all, thank you to our Lord and Saviour as He has given us strength, hope and peace like no other. It is Faith alone that has brought us this far.

“Faith enables persons to be persons because it lets God be God” – Author unknown

“I can do everything through Him who gives me strength”  Philippians 4:13

This visit flooded us with so many memories, but today memories of our little friend J, a baby boy who recently lost his fight and died from Leukaemia was very close to our hearts.  We pray that his family find peace and strength and that little J rests in peace now he has no more pain. Cam did also manage to catch up with one of his young friends who sadly relapsed just before Christmas but it was wonderful to see her full of smiles and looking so well.  The moment when her Dad said to me “People do not realise that the entire family’s life stands still and life does not go on, as so many seem to think and say” was a timely reminder of how blessed we are that Cameron has done so well since being diagnosed in February 2008 and we continue to thank God everyday for Cameron’s healing and for keeping our family afloat throughout this journey.

I would like to once again thank everyone who has stood by us in 2008 and for the wonderful support and prayers that we received from so many unexpected quarters.  We hope 2009 will be a great year for you all.  We pray that 2009 will bring complete healing for Cameron as we continue to put our family and lives back together again. 

We spent an enjoyable Christmas and New Year on the Central Coast, NSW and in the Hills District in the west of Sydney, with some of our family and celebrated the arrival of my sister’s new little girl as well as my nephew, Clayton’s first birthday.  It was a pleasant way to end the year. We returned home very late Saturday night after a long 14 hour drive and as always it is great to be back in Queensland – this really is our home now.

While we were away our sweet family dog, Radar, was blessed with a new home too.  It was bittersweet event for us all but we felt that it was cruel to continue to keeping him on our small block and has now got a home with a wonderful family on a farm, riding on the back of a Ute and living the life he deserves and that he was actually born for as a Border Collie – plus he has a companion too, which he desperately needed.  He went on a farm stay holiday for a trial and he loved it and they loved him so he is staying.  We were all very sad but also very happy for Radar.

“Belief is truth held in the mind; faith is a fire in the heart.” Joseph Fort Newton.

Make-a-Wish thought of and organised absolutely everything from the moment we left home – even parking at the airport – right through to our return. We left Brisbane on the morning of Friday 7th November and flew to San Francisco with a stopover in New Zealand.  A Make-A-Wish volunteer met us at the airport there with a big welcome balloon and a bag for Cameron with goodies in it as well as our itinerary and city passes.  We went straight to our hotel near Pier 39. Having gone back in time we still had Friday afternoon to do things. 

On Monday a shining black stretch limousine picked us up at the hotel and took us to the Mythbusters studio where we were met by the producers who showed us around and chatted for a while until Jamie and Adam arrived after a little while – just the same as they are on TV.  The children were so excited and in awe.  They chatted and joked with the kids, and Jamie asked each child where they had come from as there were 3 other families all from the US. They Mythbusters spent most of the time answering many questions from the kids and sharing anecdotes about their experiences busting myths.

After a while we went upstairs and the kids just hung out with Jamie, Adam and thge crew, eating pizza amongst all the props and just having a blast.  Then Carrie and Grant came along and hung out with the kids, answering lots of questions and just relaxing with them.  It was all very down to earth cool…  Eventually it was time to go and our limo was standing by to take us back to the hotel. 

Cameron just beamed throughout and of course Carlton could easily slip into the lifestyle of the rich and famous very easily.  Owen just loved everything and was excited. The whole experience really highlighted the fact that every step we take together as a family is such a blessing, as I think how much has happened during this past year.

Our week in San Francisco was so busy with absolutely everything laid on by the Make-a-Wish Foundation.  We had a boat trip to Alcatraz, which was really a lot of fun; then a coach tour over the Golden Gate Bridge to Muir Woods, a Redwood Forest National Park which was beautiful but the highlight for the boys was it was one of the locations where the Star Wars movies were filmed – with a stop in Sausalito, a lovely bay-side village.  In addition to all of this we were given City Passes, which provided admission for all of us to all of the main tourist attractions around San Francisco; from the Museum of Modern Art, to unlimited bus and tram rides, a bay cruise, the Aquarium, etc. and so we just had an absolute ball as each day was action packed with exciting stuff to do. 

The boys particularly enjoyed the Exploratorium, which is a hands, interactive science museum that easily consumes all of the day… and Ripley’s, Believe It Or Not was also a real laugh. The city of San Francisco is beautiful, but not without its very sad side of homelessness and general big city stuff, which was quite a shock to our boys – especially Owen. He was genuinely upset to discover that there were so many people without homes, living on the streets.  It reminded us just how fortunate we are to be living on the Sunshine Coast in Australia and what a wonderful life our kids have.  We may not have all the trimmings but it is peaceful, beautiful, clean and relatively crime free and in so many ways our kids are protected from so many unpleasant things.

On Friday, the day of departure, we celebrated my birthday taking our last walk around San Francisco. What an amazing trip and all thanks to Make-A-Wish.  The children now love the show even more and watch it most mornings at 6:30 am, which is when it is on the Discovery Channel. It all seems so much more real now – even I look at it differently.  The Mythbusters team were fantastic – all so attentive and genuinely interested in the children. They clearly recognised that these kids had actually honoured them in a very special way. They obviously have an absolute blast doing what they do and were not at all ‘Hollywood’ types. We will post a video here as soon as Bill has had a chance to edit the many hours of filming we did.

Thanks again to everyone involved in making Cameron’s wish come true.

The Oncologist took us through all of the scans and the difference was obvious and quite remarkable.  She checked Cameron over and is very pleased with his progress, adding that she is now less anxious about him.  He will not have to endure any more tests until the 6th January when he will have another C/T Scan.  We get to enjoy and relaxing Christmas, which really means a great deal to us as this has been a very tough year for our family and we had no idea what lay in store for us this time last year, or what the outcome would be.    We are thankful to God for each and every day.

Cameron and I were so excited and happy the whole drive home, which seemed to pass so much quicker than usual. It feels like little people are dancing around in my heart!  I really want to take this opportunity to thank those friends and family members who have stuck with us throughout this ordeal and for all the messages and calls I received in recent days to say that we are in your thoughts and prayers. This last week has been so full of anxiety for us and my tears are never far from the surface as we have been in survival mode for a while now. A kind word means more than you may ever know.

Over the past month or so Cameron has had some wonderful experiences – all provided by charities who know how tough this journey is.  During the recent school holidays he enjoyed a 5 day camp down on the Gold Coast, all provided by Camp Quality and he had a fantastic time. I must confess I found it very hard to let him go… In the weeks leading up to his departure I tried hard to talk him out of going, without success, but I knew medically he was in good hands with experienced supervision as well as a nurse and doctor on hand. 

There was one adult companion to every 2 children and Cam’s buddy was a little boy from the Gold Coast who has been on a number of these camps, which are annual events for childhood cancer survivors.  Of course he also met many other children from all walks of life too and each one has their own cancer story to tell. It’s an extremely positive experience for all of these kids to be able to share quality time together.

No sooner had he returned home from Camp Quality when our family was invited to the Queensland Raceway by the Make A Wish Foundation for a full day of sports car action.  Off we went to what we assumed was a scheduled race day with maybe a visit to the pits. It turned out to be a far more spectacular event put on exclusively for all of the families that Make A Wish are in touch and was sponsored by Intabill. The boys all got to go in Porsches, Ferraris, a Lamborghini and other sports cars including v8 Drifters and they also met a couple of celebrity race car drivers including Jamie Whincup (pictured with the boys) who won Bathurst the following weekend. Everyone had an absolute ball! The kids all received free t-shirts, caps and even a brand new racing helmet, which were later signed by the drivers…

I looked on in horror and in earnest at Bill for him to ‘do something’ when they went out for their first spin around the track… He just grinned as some of the cars were passing us in the pit lane, going down the straight at speeds in excess of 250 kph… with my children in them…  I worry about them going down a hill on their bicycles and here they are racing around the track at over these speeds!  We were both convinced that at least Owen would come in terrified and hysterical, refusing to go again… but it never happened. They couldn’t get enough – even the drifters were doing their ‘drifting’ routine which was Cameron’s favourite experience of the day. Of course, we were one of the last families to leave after an absolutely fabulous day.  

The effort these organisations put into these events is impressive.
 
Enjoy the photos.

“The Lord is gracious and compassionate; slow to anger and rich in love.”
Psalm 145:8

As the discussion turned from consideration to likelihood the temperature in our household and our lives began to rise… Carlton chose to stand by Cameron and would not allow him to go to a new school on his own and of course little Owen would not consider being without his brothers.  After a very emotionally charged week, discussions with both schools and his oncologist, lots of support and many tears (from me of course) we came to rest on our decision. 

The boys are now attending Nambour Christian College and are settling in well.  Cameron is so happy and after a shaky first day Owen has also settled well.  Carlton misses some things but has lots of new friends and is always game for a challenge.  Bill and I are catching our breath, have had another burden lifted as the financial impact of this journey with cancer has devastated us and the new school costs half the fees and they have been extremely flexible, generous and accommodating. We now look forward to and are both very excited about rebuilding our family, home, business and life with all our boys together. 
 
After much speculation Cameron’s hair is growing back curly!  He thinks it is hysterical and is having a ball rubbing it and making it all fuzzy – amazing how living with cancer makes you realise the type of hair you have is no big deal – just having it grow back is good.  He has a real sense of humour and is game for a lot these days.  It is wonderful to see him playing up now and returning to normal ‘boy’ behaviour and the huge smile across his face when I pick him up from school these days bring happiness deep in my heart. 

He is now off all medication and picking up where he left off, forever changed of course!  We look forward to normal days and return to the hospital on the 15th and 17th of October for C/T and PET scans to see if the mass is still shrinking on its own and make sure there are no active cancer cells.  Then we return to see the oncologist on the 21st for the results.  Prayers for continual healing are most welcome.
 
Until next time….
 
“Those who sow in tears will reap with songs of joy.”  Psalm 126:5

The oncologist is happy with Cameron and his last blood results were all good.  He is not allowed to be involved in “competitive” sports for the next 6 months (even though he tried hard to convince her that tennis was competitive so if he could do that he could participate in a sports carnival!).  Our next visit on the 14th August will be for a C/T scan and the week after we will see the oncologist once she has the full report and we will know what the plan is going forward. He is still not yet officially in remission but this could be right around the corner as they have said he may always have some residue scar tissue left in his chest due to the size of the mass.
 
During his last visit to Brisbane Cameron was also assessed by an educational psychologist to see how he is doing academically.  This was sponsored by the Ronald McDonald Learning Program.  His assessment was very good and fortunately he has not suffered too badly.  There are some gaps and he has certainly had some effect from the treatment etc and so he has been accepted on the program, which means they fund 40 hours of private tutoring.  We are so thankful.  A journey with a child with cancer has so many effects on a family and programs like this do help ease the burden in small but meaningful ways.  As a family we have learnt and grown so much and I look back and know that this is the journey we were meant to take and know it will take us to new places.
 
Anyway next time you are in McDonalds you know where that change in the little box next to the till goes… the Ronald McDonald programme not only supplies accommodation to families from out of town who have to live near the hospital just like we did, they help families who have children with cancer with different educational grants, family breaks at their holiday homes around the country and in many other ways.  Not that I am supporting junk food but it’s nice to know that Cameron and others like him have been supported by those who do…
 
The wonderful news is last Sunday both Cameron and Carlton were baptised.  As I said this journey took our family so deep and while the boys had spoken about being baptised before Cameron got cancer this journey really emphasised their faith and they both took the step before our whole congregation.  Bill and I were so proud of them as they stood up and gave their testimonies and dedicated their life to Christ.  They both spoke so well and Cameron seemed so mature.  Carlton’s testimony touched the heart of so many and he came out of the water in true Carlton style.  Of course this was a huge moment for our whole church and a few people from school who came along to witness this moment as they have all journeyed with us with many having a tear or two. 
 
This last weekend Cameron and Carlton went on a youth camp.  Both Cam and I were rather anxious at this step!  As I waved goodbye I could tell he was anxious about being away.   He returned Sunday exhausted and had a ball.  Carlton was given the command to keep an eye on him and I am not sure how that went although Carlton said he told him not to play footy and he didn’t listen!  Anyway they went horse riding, canoeing, had a go at leather making and had God time too.  By 7:30 last night everyone was fast asleep so I am sure we will hear more as they recover over the week, we do know it was freezing as they were so glad to be in their warm beds.  Of course Owen was not left out and went for his first sleep over with his friend – thankfully as he was bored within half an hour of his brothers leaving!  
 
Until next time thank you all for your continued prayers and support. 

Last night Bill and I watched the movie Bucket List with Morgan Freeman and Jack Nicholson. It really reminded us of many parts of Cam’s journey with his friends, especially the scene of them walking together with their “robots” (drips), just that they were men and not children. In one scene when Jack is on chemotherapy and living in the bathroom he stares forlornly into the mirror and says to himself, “Somewhere some lucky guy is having a heart attack right now.” How true to life for oncology patients… Some have an easier journey than others, but no matter who or what you are, there is no easy journey when living with cancer – no amount of money or prestige changes the fundamentals of the experience.
 
The last week has seen the most normality we have experienced in a long time with all three boys going off to school every day and Cam being involved in everything, including refereeing Owen’s rugby game at Noosa on Saturday. He was so excited to tell me that the coach said he could do it every week. We are learning that there are a lot of ways he can still be involved in activities while recovering even though he can’t actually do the hardcore sports.

We still have to work hard to get him to recognise his limitations as he is ready for anything and everything, but we have strict instructions from his oncologist, but it doesn’t mean he has to be on the sidelines. Saturday evening Cameron and Carlton went off to the Roller drome with their youth group and had a lot of fun rollerblading. Then today after church the boys and I visited with friends while Bill worked. He missed a treat as we were taken on a boat trip out to sea off the Mooloolaba coast to see the whale migration, with Owen hanging on for dear life and Cameron and Carlton having an absolute ball with their friends. No whales but all in all this weekend really reminded me how blessed we are how far we have come.

Consider it pure joy, my brothers, whenever you face trials of many kinds… James 1:2

Today when we were out we bumped into one of the radiation therapists who was involved with Cameron’s treatment.  He told Cam of someone he knows who has had a similar mass left from his cancer 12 years ago and that it has just stayed like that. They believe it is scar tissue so it is encouraging to hear these things and he was so pleased to see Cam looking so well and his hair growing back.  God places people just where and when we need them – he has not been up to the Sunny Coast for 8 years and the day he comes up the bumps into Cameron. As he said, its destiny.  Alternatively we could look at it like our dear little friend ‘A’s mom said, “Tell Cam it is just an extra heart because if anyone ever deserved one it is him”. He gives so much to the other cancer kids who all love him.

I have also added a message under “From Leigh”. Also, look out for episode two of the Cameron’s journey video in a few weeks time.

The oncologist is suggesting that for the next month we should ‘sit on our hands’ as far as treatment goes and Cam immediately made a joking gesture – holding out his hands with a chuckle.  The headline results of the tests were only given to us so that we didn’t have to be anxious all weekend. She expects to have all the detailed radiology, respiratory and other written test reports on Monday and will then discuss the way forward with her colleagues during their weekly meeting on Tuesday.  We will know the definite plan sometime this coming Wednesday.  There is a strong possibility that they will decide to do a biopsy to determine exactly what the exact nature of the remaining material in Cam’s chest is so that they can work out next steps. 
 
It is a strange place to be because while there are no living cancer cells, there is still glaring evidence of its presence so he is in an interim stage, which is how I think she referred to it.  We have to just continue to be patient and allow everything to work for a further month. That is the radiation, which is still active, as well as his immune system, which she says has not been compromised – unlike so many other kids. Cam was also very happy to have been given permission to return to most of his sports including tennis and other sports where he is in control.  He is not allowed to do cross country or any strenuous competitive team sports, tournaments or carnivals as such but this is a whole lot better than where he was just a few short months ago.
 
We were blessed yet again to catch up with our dear friends in and out of the hospital while in Brisbane and reminded too of the immense suffering of families living with cancer. In that world Cameron has really been extremely fortunate and we have much to be thankful for in that respect.  There are many children and their parents that need prayer at the moment and so we are grateful to we have been able to offer a hug, a word of encouragement and friendship – as we in turn have been so greatly blessed by them.  Our very special friends ‘M’ and ‘A’ are doing well and Cam, Carlton and Owen had a lot of fun catching up with them and we even managed a pizza night with ‘M’ and his family.  Some of our little friends are not doing at all well at the moment, which saddened us, but we believe the little fighters will soon be doing a whole lot better. 
 
Owen and Carlton did well waiting patiently for close to 3 hours while Cam had his PET Scan Thursday and Carlton went along to the hospital school for the morning on Friday and loved it.  They also love visiting the wonder factory, which is an amazing facility inside the hospital, filled with computers, electronic games, etc., where they also get to meet and play with other kids in similar situations. My prayer for all our boys is that this journey will touch them in such a way that they will grow into men full of humility, kindness, generosity, love and a willingness to help others with sincere compassion and deep understanding.

”Speak tenderly to them. Let there be kindness in your face, in your eyes, in your smile, in the warmth of your greeting. Always have a cheerful smile. Don’t only give your care, but give your heart as well.” – Mother Teresa

PS: Some new pics in the gallery.

Next week the school holidays begin and we are back and forth to Brisbane a number of times for Cameron’s barrage of tests and of course we look forward to visiting our dear friends down there who have come to mean so much to us. 

Joy is a net of love by which you can catch souls. – Mother Teresa

Monday we all attended our Australian Citizenship Ceremony and it felt good.  Another milestone reached – every one of them reminds us how far we have come and how blessed we all are. Particularly since we have had a little over a week back at home now and everyday Cameron’s hair is growing back a bit more, including his eyelashes and his body shape is slowly starting to change, again.  It seems strange not seeing the central line hanging out of his chest and it makes me smile inside whenever I see his chest.  The dressing pulled some of his skin off which also became a bit infected, so he could not go back to school as expected, until Wednesday but that is all healed too now. Six more days of the Clexane injections and then that will be over too! 

On Wednesday he was playing dodge ball at PE and ran around at lunch time which must have been so liberating for him.  That evening his thigh muscles were very sore, but for once this was a good ache! He had one little steristrip hanging on until Saturday and yesterday he had his first swim in the sea!  The weather wasn’t great, but we couldn’t keep denying him the swim he has been craving since February and he thoroughly enjoyed himself.  So for now we are home until the 23rd June when we go to back to Brisbane for his heart echo and to see his oncologist.  Sometime that week he will also have a respiratory test and the main events are on the 26th and 27th June – these are the PET and C/T Scans, which will tell us if he requires any further treatment!  We remain steadfast in our belief that it is all over, but until we have formal confirmation of this we will adjust back to life in the Sunny Coast…
 
For the next two years I will be involved with the Family Advisory Committee for the Queensland Children’s Hospital, which I am both excited and honoured to have been invited to become involved in.  On Tuesday evening I went on a tour of the brand new Mothers Hospital – which opened the following day – including the Neonatal ICU, birthing suites, wards and it was very impressive.  I would love to have had my children in a hospital like that.  I feel so honoured to be a part of this planning phase, helping future families to have an improved hospital experience.
 
I hope to get the photos up soon of the final day of radiation. Until next time we look forward to a couple of weeks of “normal” bliss!
 
“The Lord gives strength to his people.  The Lord blesses his people with peace.”  Psalm 29:11

A more comprehensive report of the past week and what will be happening next as far as final tests and so go, is to follow just as soon as Leigh gets to it, as she is a bit of a mover and shaker now as she arrived home to receive a formal invitation in the mail, to join the Queensland Children’s Hospital Family Advisory Council, which meets once a month and provides advice to the hospital CEO on a wide range of issues. Of course she was delighted to accept the role. And one final footnote that seems to somehow provide a fitting conclusion to this period… this coming Monday Leigh, Cameron, Carlton, Owen and myself will be attending our Aussie citizenship ceremony, which basically means the next time the Boks, All Blacks, England and Australia enter a semi-final, we have a 75% chance of winning! It also means we’re actually allowed to call oursleves official supporters of the Reds, but continuing to support the Sharks, particularly against the Reds becomes an illegal activity, for which we can be banned from the City of Brisbane and in extreme cases deported from Queensland, but we do get free lifetime membership of that underground movement…

Cheers and thanks again all.

Radiation is still going well and the anti nausea tablets are helping him not feel too bad now.  He is getting so excited as the days pass. His oncologist told him the days of getting back to chores will be upon him soon! Yesterday Cameron also went to the hospital school for the first time as his blood counts are good, which he thoroughly enjoyed and he made a new friend whose sister has Hodgkin’s Lymphoma – someone who understands what life is like for him.  It is so good to see him doing well now being able to join the others and he came out very cheerful. 

Late yesterday was spent playing on the Wii at the Wonder Factory at the hospital, while I sat in the parents lounge.  These facilities are all new and it is fantastic what they have done all through the Foundation. It is perfect timing as well as I have a pretty nasty cold, which finally got to me so I am trying to avoid him, which is not at all easy. We saw our dear little friend ‘A’ and her Mom today which is always a delight and she is doing so well.  She also has a cold so we were outside in the “colds” and “bugs” area!  Unfortunately we are unable to catch up with others because of this cold.

Cameron goes into his radiation treatment each day with a mission, starting by jumping up on the bed, taking a few deep breaths. Then they clamp him down and he is very still and quiet (believe it or not) and out we all go and leave him alone in the room that some jokingly refer to as “the torture chamber”. The alarm goes as we leave the room, the doors close and the only access to Cam is by camera.  We all watch him on a monitor and can hear him if he needs them.  But he is prepared and knows that if he is still and quiet it is over quickly.  The machine spins around and he is “zapped”, (official medical terminology) from the back, then it spins around again and he is “zapped” from the front.  Then it is over. As soon as he is unclamped he jumps up, says thank you and cheerfully tells them he will see them tomorrow as if he is coming back for a visit. 
 
We are not staying at the Lodge on the hospital grounds this time, but staying a few minutes further from the hospital at The Childhood Cancer Support units.  This accommodation is totally charity run, with no funding from the hospital and the people are so incredibly friendly and supportive.  Cam and I are staying in an original old Queenslander house and it is ready for renovating but so full of character and homely.  It feels so much better and Cam has been able to get some of his school assignments done so it is all round a far better environment to be in. 
 
Cameron and I are enjoying catching up with all our friends down here who have come to mean so much to us since February.  Our first night there Elicia came over to “welcome us back to Brizzy”. It’s always such a delight to see her.  We have also been seeing many friends and it’s been wonderful to see everyone having a fairly good run – as cancer treatments go of course!  We got to spend time with “A” while she was having her chemo and are thrilled to say she is doing so well and her parents are so grateful to all of our friends who continue to pray for her.  Of course being in Brisbane without seeing “M” would not be the same, the little boy who Cam feels is like a brother to him now.  He too is doing well and went home to the Gold Coast for the first time since January.
 
Last Friday we returned home and as usual this felt so good.  Cam enjoyed his weekend at home but unfortunately Carlton has a cold and Owen had to be taken to the doctor late last night – yes, our home is still full of excitement…  He was screaming in pain and has an upper respiratory infection and his ear has a big “bubble” inside on the ear-drum, which burst open overnight so the excruciating pain is gone.  Of course Cam has to stay away from his brothers while all of this was going on, which is not at all easy to engineer, but just another little hurdle for us.  So Bill and my mom went off to church with Cameron on Sunday while I stayed home with the boys and we all watched the DVD, “Indescribable” by Louie Giglio, which is an incredibly inspiring view of our place in the universe.

Later on Sunday, the answer to keeping distance between the boys was for Bill to take Cameron fishing, naturally… while Carlton went to a friend who also has the sniffles so Owen had me all to himself for a while, which I think he needed.  Sunday ended with an enjoyable visit from friends and the evening was spent preparing to return to Brisbane on Monday.

We’re now halfway through the week and so far everything is moving along quite nicely. Unfortunately, we still don’t have a firm date for Cameron’s central line to be removed, but hopefully that will happen very soon. 
 
“He will give his people strength.  He will bless them with peace.” Psalm 29:11

Cameron did achieve another milestone last week, spending a full day at school for the first time since he was diagnosed.  He is feeling very frustrated right now because he almost feels normal, but for the line poking out of his chest and so he wants to kick the football, throw and run with the rugby ball and generally do all the stuff that he is so used to being able to do without a second thought, but can’t. When we stop him he gets angry with us and when we try to give him some space he invariably ends up hurting himself. Apart from anything else his overall physical condition has really changed from being so inactive, so he gets really tired and frustrated.

We did spend a lovely Mother’s Day yesterday in a local park where we had a picnic and the boys got to let off a little steam. Of course the weekend would not have been complete without a visit to Nambour Hospital for Cameron to have his insuflon changed late yesterday. His leg has been very painful at the site of the last insuflon and for the first time was causing him to limp. Last night he was absolutely exhausted and limping after playing Frisbee and hide-n-seek in the park and we were a little concerned that he had collected an infection in his leg as it didn’t look good, but this morning he was feeling a lot better after a good night’s sleep. 

So, we are thankful once again that as planned Cameron managed a good few weeks at home as well as some time back at school and all things considered, he managed to remain in generally good health. Of course that did start to look rather ominous when his central line stopped working, but even that is turning right around as his oncologist has decided that since the central line was only being left in ‘just in case’ he needs further chemotherapy after radiation, but is now malfunctioning with no further use anticipated, his central line is going to be removed quite soon and arrangement are being made for this to happen as soon as the surgeon that put it in is able to schedule him in. This is great news as it is not only another sign that that the medical team are confident that his recovery is going very well, but the line is one of the major factors inhibiting Cameron’s return to ‘normal life’.  It prevents him from swimming, but is a major concern any time he gets physically active.

 “Encouragement is oxygen to the soul.” – George Adams

Of course we were all so hoping the Reds would because the event was made possible by support from the Reds organisation and although that didn’t quite happen the children had such a blast and was the result as far as we were all concerned. After being directed to parking right outside the stadium entrance and making our way to the box where the food and refreshments were all laid on, the kids were delighted to discover a Play station and an X-Box, which Elicia had organised. So the children played games, watched rugby and even had the company of three Reds players Lloyd, Oli and Herman before the kick-off and right through half time. Then Caleb, another player joined us for a while as well.  The guys just chilled with the kids, played games, chatted and watched the game with all of us.  It was a real pleasure to meet them all and the children all came away loaded up with stickers, caps and posters signed by all of them.  Cam was his usual caring self, making sure everyone got their caps signed including a full set of merchandise that he set aside for little “B” who was missing, but who did not miss out.  Her mother was so touched by Cam’s caring attitude.

It is difficult to explain the emotions of seeing not only the children, but their families enjoying such a special evening out together in the midst of their respective journeys, which somehow allowed everyone to escape from the oncology routine, to feel special and set aside their cares for just a few hours.  After the game if anyone saw all the kids running down the corridors, chatting and laughing they would not have known they were any different if it weren’t for their bald heads and nasal feeding tubes flapping around behind some of them as they ran.  The evening was another reminder of how quickly we can find ourselves somewhere in life that is completely unexpected and in such a short space of time be so touched by and counted among people whom we had no previous idea even existed. 

On Saturday after Owen’s rugby and Carlton’s soccer games we made one of our now regular trips to Nambour hospital for Cameron to have a new insuflon fitted once again. Sunday after church our life group met at the beach and we enjoyed great company as usual.  Cam was a little frustrated as he could only watch all of the kids swimming and boogie boarding and then he really was not at all amused when I had to intervene and stop him playing touch rugby on the beach…  Yes he was running and all the rest and when I told him he wasn’t allowed to play contact sport he said “Mom, I already fell and I knew to cover my chest”…..Argh… anyway Bill took him off fishing nearby, but they didn’t tell me that the insuflon in his leg had got damaged playing rugby until after they had been fishing, as Bill did not want me to ruin Cameron’s fishing by dragging him off to Nambour Hospital.
 
Today was a Queensland public holiday so after an early trip to the hospital for another insuflon Bill took all of the boys fishing along the Maroochy River.  Later on I brought them lunch and it was so good to see them in their peaceful little spot with Radar the dog, just being a normal family.  My heart delights at these scenes that most of us are able to take for granted.  When I left I took Carlton and Owen home with me as they’d had enough of feeding the fish, which meant Cam got to spend some quality time with Bill. Cameron had a near perfect weekend as we wound it up with his favourite, a BBQ at home yesterday evening.
 
“If we take care of the moments, the years will take care of themselves.” Maria Edgeworth

I was very scared and after I was finished in emergency I went up to the intensive care unit because I could not lie down flat on the bed and in the night they had to give me oxygen. The nurses and Doctors treated me at the Royal Women and Children’s Hospital foundation and it is the largest hospital campus in the southern hemisphere and if you got lost you were lost. I have met a lot of younger and one or two old kids when I was there and almost all of those kids are coming with us to a Queensland Reds rugby game this Friday.

Just so you know I am doing a lot better than I was 2 months ago and I am now doing almost everything I was doing before this happened. Cancer has really affected my school life because I am not going to school for the whole day and not every day and I’ve got a lot of catching up to do. Cancer has also affected my fun time because I am not allowed to swim or run or do any sport which is a bummer.

I feel better now that I’ve finished all my chemo but for my radiation I have to be strapped down on the bed. This experience has definitely changed the way I look at things and made me aware that cancer is not a nice thing to have and that I could have died and that it is a life threatening disease and that you have to be careful and be aware that you or someone close to you could have it now or even later on in your life or someone else’s life.

When I finish school I want to donate money to the Cancer Foundation and I want to work with animals and make kids like me that have cancer happy. Thank you all for your gifts and prayers they probably helped me a lot. But I think the one most important person or people are Jesus and God because Mom said that on the 4th of Feb night time when Mom came to check on me she recalled seeing Jesus beside me taking care of me for that night and he kept me safe until I was at the hospital in the care of the nurses and doctors hands. Hope to hear from you all soon.

Cheers Cameron

As days at the hospital go this one was fairly routine. We went through central line care, blood testing and insuflon changing with a fair amount of laughter and banter with the nurses, but insertion of the new insuflon was exceptionally painful for Cameron this time and put a bit of a damper on the proceedings for a few moments.  Then we met up with our now very special friends – little “A” and her Mom and for those of you who have prayed for her and followed her progress you will be pleased to know she looks great and was smiling and chatting to us.  Our visit to outpatients would not have been complete without a visit from Elicia as she breezed in to cheer up Cameron before heading off back to Uni. 

Then we were off to the main event and purpose of our visit to Brisbane on this occasion, a radiation planning meeting, which was primarily to check the mask fitting and all was ready for treatment. Poor Cam does not enjoy being clamped down in this ‘Man in the Mask’ contraption and I cannot say I blame him, but he has a little under two weeks to get used to the idea of what lies ahead every day for 3 weeks once treatment commences.  Then we went along for the C/T Scan and by this time Cam was really starting to feel quite emotional and physically exhausted as we had been walking from one end of one hospital, to the other end of the adjoining women’s hospital, but in true Cameron style he came out smiling and laughing. 

Then we were back to outpatients to see Cameron’s oncologist who is very happy with Cam’s progress. The scan showed that the tumour has certainly shrunk but is still there. Unfortunately, so too is the blood clot in his SVC, so the twice daily injections have to continue, probably until after radiation and possibly until his central line is removed and of course Cam wanted a date for when it will happen. Of course it’s too early to say exactly when that will definitely happen, but Camerone has already worked out a date himself, so we will see if he is right. 

Cam’s blood results also indicated his neutrophils are a little low so we still have to really avoid anyone with sniffles or any other nasties in fact, but he will also have to try to avoid cutting his finger in food tech again…
Yes, he likes to keep us on our toes with injuries when everything starts to get a little too ‘cruisey’.  First there was the food tech cut, then he managed to cut himself on some sharp object when we were out on the river-boat recently, which turned into a minor panic to stop the bleeding and then when Bill took the boys fishing at Mooloolaba last weekend he managed to jab himself with a fish hook. Although none of these injuries were horrific each one presents an opportunity for infection, but the iodine dousing does seem to work.

Anyway, we left Banksia Ward with a goodbye to “M” who Cam says is like a brother to him now and moved straight onto another big milestone for Cameron, which was the return of his wheelchair, which I felt a very slight hesitance about, but faith soon turned that away. Cameron couldn’t resist his last ride and had a quick race around corners before handing it back. What a joy to be able to leave there to return home again.  Cameron was exhausted and slept almost all the way home.
 
“It shall be done to you according to your faith.” Matthew 9:29

Once again though, thankfully, this time the bone and muscle pain he usually experiences with this particular drug was not as severe as before. We now have a good break at home with only one trip to Brisbane for tests and final radiation planning on the 30th April until 12th May and Cameron has started returning to school. He went for a few days last week, staying until lunch time. He has also been determined to manage without his wheelchair. Thursday Mr Independence even insisted on carrying his own bag, on his back, and not wanting me to walk him in, which brought a whole flood of mixed feelings for me. 

I thank the Lord that Cameron is on his way and doing so well, but it is also difficult to avoid feeling concerned that someone might come running into him, or that he might over-stretch himself.  Of course, none of these things happened and when I collected him at lunchtime the massive grin on his face told the whole story as he had a real sense of accomplishment.  As usual however, off we dashed to be somewhere for something medical related. This time it was the pathology lab for blood tests and Nambour Hospital for a new insuflon in his leg where I still have to give him twice daily injections for his blood clot. 

Nevertheless, slowly but surely Cameron is getting his life back and what a joy it is to watch as so many things we take for granted are treasured by all of us now. One of the changes we have all recently begin to really notice in Cameron is the incredible sense of humour that he has developed during this time.  He seems to take so much in his stride now and matured well beyond his years.  And when Owen and Carlton talk about things that have happened in the past they now routinely use Cameron’s cancer as a timeline reference… “…before Cam got cancer…” and “…since Cam got cancer…”  For them it has also been a weird period where everything is not quite the same as it should be or was. They too get so excited when they see Cameron passing each milestone.
 
Cameron has really wanted to go fishing. Particularly since the boys’ brief attempt to undertake a fishing excursion with Bill last weekend got washed out. So, on Friday morning he was once again asking as it was the annual ANZAC public holiday here. Out of the blue our friends Lil and Mel called to ask if we would like to join them for a pontoon river boat ride along the Maroochy River that afternoon.  Of course the boys were all delighted. It was a glorious, in fact perfect Sunshine Coast day made even more so relaxing and enjoying a barbeque on the boat while the boys got their fishing fix.  What a fabulous afternoon we spent with Lil, Mel and their 3 lovely children Lameel, Melfred (hopefully spellings are correct) and of course Elicia, who has become such a special person to Cameron and I, spending a lot of time with us at the hospital in Brisbane.
 
So… for the time being and as long as Cameron remains well, our next couple of weeks will be more of the same… without the boat ride of course… half days of school, hopefully building to some full ones; visits to the pathology lab for blood monitoring, as well as to our local hospital at Nambour for routine line care and insuflon changes.  For the moment that will do just nicely, thank you Lord.

While we were there a few friends came by to visit which he thoroughly enjoyed.   Sadly, we also learned that last week a few of the children from the ward lost their fights against Cancer and our hearts go out to their families.  I could sense some real sadness in the ward when we arrived and apparently all of the ward staff have been very upset to have a lost a number of children in one week. Cameron was also very sad to hear about this and wanted to know how and why and so on.  A few more of the other children also developed infections, while others have had their treatments delayed due to their blood counts not being good enough.  At these times we are reminded of how blessed we are and how incredibly well Cameron is doing. 
 
On Wednesday afternoon, after Cameron’s final dose of chemo for the week we had our first radiation therapy planning meeting, which was a real education for both of us.  Cameron was obviously not feeling great after 3 days of chemo and the science in this next stage is quite incredible, very visible and discomforting in an entirely different way to chemotherapy.  Nevertheless, he took it all in his stride as usual as he had to lay on a bed like contraption that I think came from NASA… (kidding) while they literally made a mould to cover his chest, neck and head. This is used to harness him to the radiation machine and ensure precise, repetitive radiation targeting – using lasers to line everything up. 

The whole Lose Weight Exercise felt like the set of a movie and began with the radiation consultant and 3 other radiation therapists fiddling around a lot, placing Cameron in one position and moving him this way and that, then taking a sheet of hard plastic type material with tiny mesh and holes in and placing this in a vat, then lifting it out wet and soft, and placing it over Cameron’s face, neck and chest with only a slight opening by his nose.  Then they clamped it down on the sides so he could not move and then proceeded to mould it around him to fit his shape precisely. Of course, after a little while Cameron got a little anxious as he lay there incapacitated and barely able to breathe or see what was going on. I cannot say I blame him, as I was hyperventilating myself for him. 

Once the mould had been manipulated to precisely to fit his shape they rubbed ice packs all over it, making it set hard.  Finally, after what seemed an age to Cam they took it off, cut out some eyes and more breathing space around the nose and then put it back on, but at least he could see now.  Once he was clamped back in place he was left alone in the room and followed everyone to the control room while they took an x-ray to check the targeting.  Then they put tape all over to mark the lines from the lasers and did more calibrating.  Finally he was “released” to the CT scan room where he was once again clamped down for another run of scans.  I had to leave him in there of course but was watching through the glass window and it was amazing to watch these smart people at work with this awesome technology at their fingertips. This was the first time I had actually seen how it all works and how the image data is downloaded from the scanner to the operators console at such incredible speed. Finally, for Cam it was over and time to go. Once again we were touched at the dedication, kindness and expertise that all the people involved in his treatment consistently display.
 
Cameron is so happy to be home again, but last night and today he has been a quite emotional, moody and irritable. This is a side effect of the drugs and I am sure being poked with so many needles doesn’t help.  Of course the huge afternoon he spent being inducted into the next stage of his treatment also brought the realisation that he still has a way to go and that he will be clamped down in that mask type contraption every day for 3 weeks.  He is processing a lot in his little mind and  I think he has earned the right to be a bit irritable, but having said that in true Cameron style he still manages a big smile and a chuckle now and then and is happy to engage in a good chat with everyone from the ladies at the local pathology lab where we had to go for blood tests yesterday, to our GP who kindly gave Cameron his GCSF injection, which he gets on day 4 of chemo, to stimulate his white cell production. It is a particularly painful injection and while we were there he had his insuflon changed again. 

I feel rather drained at the moment. This thing is like a treadmill that none of us can get off. It is so hard to even begin to understand how Cameron feels.  Somehow he continues to display great courage and faith and whenever he says he wishes he did not get cancer he is always quick to say he is luckier than the others that he knows and that he will rise above this and is being healed a little each day.  He also believes he will be able to help other sick children when he is better. He told me the other night in the hospital that he is so grateful to God that He hears his prayers and is helping him through this time. 
 
Now Cameron has a bee in his bonnet. Actually he has a number of them. The major one is about going fishing this weekend. So yesterday he went into the garage and began pulling out all the fishing gear and once he had sorted it out he came out smiling.  I think he enjoyed the space of being on his own and doing what he wanted to do and feeling like he had actually accomplished something.  In recent days he also decided to write a letter to Kevin Rudd about another issue that has been bothering him. It looks like we have another activist in the family.
 
“Be of good courage, And He shall strengthen your heart, All you who hope in the Lord.” Psalm 31:24
 

Of course the time outdoors in the fresh air and the light Lose Weight Exercise has really been beneficial to Cameron. He also likes skimming rocks across the water and just generally enjoying the wonderful warm days and calm ocean that we have been experiencing recently. Sometimes we take Radar the dog to the beach too, but he isn’t allowed on all the beaches so we either go to Point Cartwright, or North Shore where he can run around off his leash. At the Mooloolaba pier we see turtles frolicking in the sea and watch the fishing trawlers going out to sea. The holiday-makers from all over are here enjoying all of the things that drew us to this lovely area.  We are so blessed to live in this part of the world.  Meanwhile, back at the ranch it seems all the 3 boys are ever really interested in is playing on the computer, killing one another in TV games and of course watching TV. Sometimes it seems our visits to the beach, the occasional game of Mah Jong with Gran are merely distractions from the electronic world these kids are growing up in.
 
Of course our week was filled with a few usual medical issues, such as having the insuflon in Cameron’s leg changed a few times. A couple of times our family GP Dr Don Thackwray kindly came to our home to do it. Cameron likes this I think partly because he also happens to be a practicing anaesthetist so does it quite painlessly, but he always takes time to chat with Cam. Of course the week wouldn’t have been complete without a visit to a hospital somewhere. This week it was two visits to Nambour hospital – once for an insuflon change and once for central line care.  Meanwhile Cameron continues his regime of daily medication that includes 4 times a day mouth care and twice daily injections, plus regular trips to the local pathology lab in Maroochydore for blood tests.

Wherever we go now it seems people tend to know us and take a genuine interest Cameron’s well-being. We are all very grateful to have remained in good health and avoided any serious issues or sickness requiring hospitalisation. Serious complications are quite common among cancer patients, so every parent caring for a child with cancer remains constantly concerned and vigilant for them – particularly when their blood counts are as low as Cameron’s have been. Overall it has just been such a joy to be home together once again and to be reminded how it is often the simplest things in life that mean the most. 

Yesterday as we walked along the beach Cam said “When my central line is out Mom, I am going to get on my board and paddle right out, get off and just tread water. It is going to be so great”.  The beaming smile on his face as he pointed out across the perfectly still ocean on this perfect day, vividly visualising this event in his future, I felt such a surge of happiness and pride. At that moment in his mind he was actually experiencing it and of course in so doing, exercising his faith.  In spite of everything – including recently starting to loseWeight Exercise his eye-lashes into his eyes, which is a terribly painful experience that happens numerous times every day – Cameron remains focused and determined.

“As for me, I will always have hope, I will praise you more and more.” Psalm 71:14
 

It was good to see the three boys enjoying the beach together as they hadn’t done in some time, although Owen said “Boogie boarding without Cam is just not fun… nothing has been fun since Cam got sick.”  We spent just over an hour on the beach and then Gran treated us to calamari and chips from our favorite Seafood take-away, which we took home and enjoyed on our balcony. The simple things and times together feel so good. 

In the afternoon he and Gran spent some time playing games on the computer. He is certainly developing a real sense of humor and is so mature. At one stage he had us all in hysterics. Then another milestone for Cameron, we were able to fulfill his yearning for a barbeque tonight and Cam tucked into a meat fest that he had not enjoyed for a while and just loved it.  Again it was good to see him helping Bill with the cooking and me doing other stuff in the kitchen. I could tell he felt good to be active and making a contribution. 

Sunday morning Cam was back in kid’s church, but exhausted after deciding to attend without his wheelchair, He ended up spending most of the time on his feet and was absolutely wiped, but very satisfied out afterwards. Later on our local doctor kindly dropped by to re-install the injection port on Cameron’s thigh, where he receives his twice daily injections for his blood clot and then it was a Blockbuster afternoon and an early night.

Cameron does tend to get more than a little emotional at times. When his mind is drawn to his ‘condition’ I can see him drift off and his emotional state changes. He is so much enjoying being home and has also convinced himself that after the 3 weeks of radiation treatment he will undergo following his next round of chemotherapy, next week, that he will be all cured and get his life back. Right now we are all feeling a deep sense of appreciation for many things we all used to take for granted.

The times of refreshing shall come from the presence of the Lord. Acts 3:19

In our funny world of pain and difficulty we were so excited to see our friends and vice versa.  In fact, I kept losing Cameron because he spotted someone else he knew and had to go chat.  Don’t get me wrong our day was not without sadness for others and pain at what is happening to these children and their families, but we rejoice at every little step forward and upwards and our times together with others who know the journey. 

Of all the things that I am proud of Cameron for the most has got to be his heart for others.  He truly cares about others and puts them first.  When we finally finished up at out-patients it was of course rush hour so I was hurrying to leave, but his friend ‘M’ was in the treatment room and upset so Cam would not leave without going to see him.  When I explained he may be a while he said “I am not leaving Mom, I cannot go without saying goodbye.  I need to see if he is okay and say goodbye.”  Shortly afterwards ‘M’ came out still upset and after I hugged him Cam gave him a “big brother” hug and made some jokes.
 
Cameron spent Wednesday recovering as he had bone and muscle pain again, which is the standard routine with these particular doses of chemo. He was also very tired.  The mobile pathologist also came by and took blood for some tests the doctor requested and it was a real treat not having to go a hospital or pathology lab just for once. By the end of the day Cameron had thankfully, once again, bounced right back and in the evening we even managed to join our home group with Trish, Stuart, Jacinta and Joe – which was wonderful as this was the first group gathering we managed to get along to so far this year.  When Owen heard Cameron was coming along he was so excited and gave a resounding “Yes!”.

Yesterday Cam managed a few hours at school even though he was very tired but it was good for him and he was glad he went.  His timing was good as his class had a Pizza party to celebrate the end of term, before everyone went off to their various sports, which promptly left Cameron at a loose end as Thursday is interschool competition day.  The rugby teacher come over to tell Cam that he missed him on the field and hoped he would see him there again next year, which meant a lot to Cameron and I believe he is being blessed by so many thoughtful people because he has and is being a blessing to so many. 

The plan was to then go and watch Carlton play his inter-school soccer match at St. Andrews, but Cameron was too tired so he stayed home and chilled.  By the evening he was quite worn out as everyday things are quite big events for him and I think he was asleep the minute his head hit the pillow.
 
“The good man does not escape troubles – he has them too.  But the Lord helps him in each and every one.” Psalm 34:19

He looked great this evening and cheered when I told him it was his last steroid tablets until his next cycle on the 14th!  He feels so good that he said, “Ah no it is chemo tomorrow!”  Yes we are back in Brisbane for Day 8 of Cycle 3 – the last day of this cycle, for some more chemo.  Thankfully though it is just a day trip.
 
I can lie down and go to sleep, and I will wake up again, because the Lord gives me strength.  Psalm 3:5 NCV

When the big guns of pharmacology start to work they immediately begin to transform Cameron’s state in a very discomforting way. The colour in Cameron’s face quickly drains and changes to a pale grey – reflecting the battle that is raging throughout his system. His mood drops and his emotions into a tailspin. He can no longer hold his fingers steady and feels very weak, fragile and tired as well as having to endure waves of nausea.  As all of that was unfolding we were moved back into the ward where all of this began so many weeks ago and Cam was lucky again to have his own room with an en suite.  On Tuesday Cameron slept well and only woke for medicine and to go to the toilet.  Once again this chemo has taken all his strength and he is incredibly tired.  Nevertheless, when the Doctors asked if we were happy to go home he said yes, of course and immediately began to plan the exit.

The final chemo of the week ran through yesterday (Thursday) morning and they took him off the IV fluids shortly after lunch.  When he gets taken off the “robot” Cam is always ecstatic – even when he is feeling flat.  Needless to say the manner of the exit lies in stark contrast to the arrival as he got straight from bed into his wheelchair, exhausted.  Once again the Nurses and Doctors were all amazing and so happy to see one of the children leaving the ward to return home and they waved us off merrily.

It felt so good to be driving home to The Coast and leaving behind this home from home that is full of so many challenging contrasts and contradictions. From incredible pain, suffering and despair to love, hope and ecstatic joy. One newcomer lady I met this time around also described it to me as ‘bizarre’.  At first she thought everyone was mad as she watched parents laughing and carrying in the midst of all this suffering, but now she says she knows this is our world where we do laugh, joke and cry together.  In most circumstances it takes a relatively long time for people to get to know one another, but in this world you bond so quickly and everyone knows everything about everyone else in no time.  It’s a real leveller. We are all the same and the children laugh in between being sick and having needles jabbed into them and people constantly prodding, pushing or poking them. “How is your boy [or girl] today?” just does not have the same meaning outside of this place and when someone is down there is always someone else there to give them a hug or cheer them along. Everyone here knows that each day brings something new. It’s a real blessing to be able to be there for someone else and give them encouragement. Even the children get very excited for each other when they reach a milestone – it is wonderful to witness. The irony at this point is that as happy as I was to be heading home, it is hard not to feel a tiny bit guilty about leaving everyone behind…

So for now we’re back home. Cameron has to go to Nambour Hospital today for the GCSF injection that boosts his white cell production. Our next scheduled trip to Brisbane is Tuesday for another chemo session, so we have a long weekend at home. Cameron was so thrilled to be home and Carlton fussed over him like a mother hen unpacking his bag for him. Yes, Carlton!  Owen came home from rugby practice delighted that we were home at least a day earlier than anticipated.  Cameron was particularly emotional at seeing Bill as he was finally over the cold that meant they had to keep their distance from one another all of last week, so they had an especially big hug.  It is good to be home.

Sunday March 23rd
 
Happy Easter!  Cameron enjoyed his Easter weekend at home and we feel so blessed to have enjoyed Easter together as a family, because not long ago we were not sure if we would be home and even on Thursday night it was looking dodgy!  What can I say but all in God’s timing.  Today was the closest to normal day that Cam has had since his diagnosis.  Other than our visit to Nambour Hospital it was as normal as any Sunday prior to 5th Feb.  I asked Cam in the car this evening, “So you have a busy day?” “Mom,” he replied with a smile, “I had a normal day today!” 

The morning began with the boys having an Easter Egg hunt and then we all went to church where Cam enjoyed seeing all of his church friends. Then after lunch we went to our dear friends the Kenealys who have faithfully visited us almost every Sunday while we were in Brisbane, but today we enjoyed being able to visit them as a family in their home and were joined by the Elstak family too. All the boys had a ball and it was a most enjoyable afternoon. Bill could not join us as he trying to catch up on his backlog of work which has piled up over the last 6 weeks. 
 
Cam’s leg had developed a huge bruise and was very painful where I have been giving him the twice-daily injections for his blood clot and tthankfully he does not blame me. So the nurses re-sited the “mini-canula” to the other leg today while were there for his daily intra-venous antibiotics. However, on the lighter side, while we at the Hospital today we had such a giggle as the Nurses are so lovely there and we are so fortunate that they are able to do some things for us close to home, but this particular Nurse was not sure how to do a couple of things and was asking Cam and I if we knew… Cam looked at me like… “Err… hello, isn’t she the nurse?” Then we had to correct her.  Thankfully we are able to laugh at these things and are able to build a report with the nurses. It just reminded us just how specialized the Oncology care that now seems so routine and normal to us actually is – and indeed how fortunate we are to have access to it. 

I am so thankful to so many people for the boundless kindness and dedication that continues to be shown to us.  For every negative we encounter, there are at least 20 positives. We have met so many wonderful people from children and nurses, to parents and doctors and feel so touched by them all. Another amazing experience for me is to see how many lives Cameron is touching, I have come to appreciate his personality even more and I am so proud of his compassion, kindness and genuine caring for others that he is showing, as well as the relationships he is building with his carers.
 
I trust you have all had a wonderful break with family and friends and pray that you have been able to reflect on the true meaning of Easter.

Love Leigh

Next we went onto the Respiratory Test which was really good news.  When Cam first had this test done he only had 70% use of his lungs and now he has 92 – 98%.  So the mass has shrunk enough to not be crushing his lungs and they have obviously recovered or recovering well from the collapse.  He will still have to have this test in future as although the chemo helps to shrink the mass it can cause scarring and inflammation of the lungs.  We finally got back to our room in the lodge, a different one this time and when Cam went to shower I noticed his line was oozing again, was very red and was painful so off we went back again.  After having swabs, blood samples taken, etc and having antibiotics given intravenously we finally got back after 11 pm, pretty exhausted. 

Thursday 20th March
Thursday began with the next lot of antibiotics been given and Cam having to drink some contrast fluid over an hour and a half then off to the CT scan.  Our appointment with our Oncologist was positive and she had the preliminary results back which showed the mass has certainly shrunk.  The good news from the PET scan is that the tumour that is still there now has some inactive cells so some of it dead so in effect it is less cancer than we can see!  It is so hard to regurgitate all the explanations – Cameron should be doing this he is so good at all the details!  She is happy with his response and says he is in the middle of “fast responsive” and “slow responsive” so I guess that makes him average although his attitude and faith is anything but average!  The plan now is after the next 2 cycles of chemo he will begin radiation in early May which will be every day for 3 weeks.  We will know more on this once we meet the Radiation Oncologist next week.  The heart echo later was normal meaning so far no effect from the chemo. Yes. His blood counts have recovered well too. 

Once again we could not end on a boring note and as we were leaving Brisbane an Oncologist called to say we had to turn around and come back.  The radiologist had discovered a blood clot in Cam’s central line.  So back we went, we just can’t stay away.  Needless to say Cam was a little disappointed.  He now has a new little attachment in his thigh so I can give him injections twice a day for six weeks to thin the blood.  I was given a choice – learn to do it myself or go to the hospital twice a day at 12 hour intervals!  Guess which I chose?.  Finally we left around 7 pm and headed to the Sunshine Coast with all the Easter traffic wanting to go from the city up to our “Paradise”.  Can’t say I blame them.
 
Friday 21st March – Good Friday
We are now home for a few days and have to go to our local hospital every day for the IV antibiotics but it beats having to stay in Brisbane.  Bill has flu and so is confined to his office and bed and can’t have contact with Cam. For a moment it looked like our Easter weekend was going to be spent away from the family but we snatched it back at the 12th hour.  It was wonderful to make it church this special morning as a family.

At this stage Cameron is feeling very tired and I think getting a little fed of being poked, prodded, injected and generally manhandled.  He is experiencing aches and pains and the daily injections burn so a few days of being at home should help him perk up again.  Hopefully this weekend will give me the time to rest too as these past 6 1/2 weeks have finally caught up with me.  A little rest and I will be ready to support Cam with his big week coming around already.

Finally… I would like to thank everyone for their wonderful support, prayers, messages, kindness, thoughtfulness and friendship.  I am finding it a real struggle to get any time for catching up with anyone but want you to know you are all appreciated and Cameron loves the messages.  Every time I think we will be having a few “free” days where I will get to catch up on calls and correspondence we end up having to do something and we spend our lives hurrying to get to an appointment and then we wait and wait.  Patience has become one our strengths!  Hospitals are not easy places to communicate with anyone from and when we do get to be home Cameron still needs so much attention and I try to spend some quality time with Carlton and Owen however short.  Not to mention all the mundane things!  Please know in your hearts that you are in ours and appreciated.   

It is now 11pm so I better get that sleep I was talking about.  Have wonderful and peaceful Easter.  God Bless you all.

So far the fund raising drive for the Leukaemia Foundation has arrived at a grand total of just under AU$400. Not sure if we’re going to achieve that magic target of AU$ 1000, vut it was worth a try, since the big ‘Shave for a Cure’ event finished this weekend. Thanks everyone who gave. The Leukaemia Foundation are very grateful. I know that because someone from there actually called me this afternoon to say they had seen the article that appeared in the local newspaper last week and to ask after Cameron – although I think the real agenda for the call was to check if I had actually shaved my hair… tee hee.. Luckily I was able to confirm that I had done so!

This brings me back to the point I was trying to make about the the fund raising target… I still have the video footage just waiting to be uploaded… I have to say that we tend to be the kind of those people who get a bit turned off when people hassle us for charitable donations. That’s not because we don’t like to give, but we like to choose who we support, based on the matters that are closest to our hearts. No doubt, most of you out there feel the same. And if the truth be known, until a less than 6 weeks ago I don’t think I would have given a second thought to shaving my hair off to raise money for the Leukaemia Foundation. We never even knew anyone who had ever had chemotherapy… much less one of our own kids.

Since then the true nature and scale of the challenge has descended on our family. Countless friends have told us about their family members who have had or who have cancer, but nothing comes close to the experience of seeing wards filled with bald little kids and counting one of yours among them. It wasn’t that long ago that being diagnosed with Leukaemia or Lymphoma amounted to a death sentence. Today, thanks to the work and generosity of people I have never before recognised, much less appreciated, Cameron will one day be well again. Sure, there is a succinct explanation: “medical and technological advancement”. However, that is only partly true. Beating cancer demands more. Much more. Sufferers require a certain level of emotional well-being in order to have any hope of regaining their physical health. For the most part however, medical science doesn’t service that. People like the Leukaemia Foundation do. Think about it.

Yesterday Cameron had one of his many regular blood tests, which revealed that he is now neutropenic, which means his system has no ability to defend itself against infections. It’s all rather complicated so if you want to learn more just follow the link. This came as a rather big disappointment to Cameron as his new friend Caleb Brown had arranged 6 comp tickets for us to all go and watch the Reds beat the Bulls tonight in Brisbane (yes the final result is just in!). Of course Carlton did come up with one of his brilliant off the cuff solutions when the doctor confirmed that a crowded stadium was out of the question … which was to leave Cam behind! We still have so much work to do on that boy… ha ha.

It also means Cam can’t go to church tomorrow. In fact he is not even allowed outside without shoes and socks, which is really, really hard when you’re 11 years old and living on the Sunshine Coast! Today was a beautiful, very warm day and Leigh suggested that maybe a walk on a quiet beach would be nice, but Cameron refused saying that it was too hard to go to the beach and not get in the water… His pride and joy up until very recently was his new boogey board! Of course swimming is a non-starter and will remain so for many months yet, because he has the central line in his chest. Chemotherapy has also made Cam extra sensitive to sunlight… so the outdoor life that he has been thriving on is now well and truly off limits. 

The trip to Brisbane was also an opportunity for Cameron to meet with his senior oncologist who is very, very pleased with his progress. She has also scheduled a new, full round of scans next week to determine exactly what impact the treatment has had on the cancer so far, so that the next stage of treatment can be tailored and planned accordingly. He now has a welcome break from chemotherapy for about 10 days and is booked into the oncology ward for the first four days of the next treatment cycle.

So, Cameron hasn’t yet returned to school and won’t do so at least until next week, when he will have hopefully bounced back from this cycle of treatment sufficiently to maybe take on a few days, or half days at school. Meanwhile, today is “Shave for a Cure” day in the Smith household. I said I was going to shave my head to raise money for the Leukaemia Foundation in Cameron’s name and Carlton has also entered the fray by having his hair coloured in front of the whole school at assembly today. Sincere thanks to everyone who has sponsored Carlton over the past week or so and also to Eleanor and Vince for their particularly generous online donations.

I know what you’re thinking… Want to see the videos of Carlton being coloured and Cameron shaving my hair off? Click on the “Shave for a Cure” link on the left hand side of this page…. yes that one… and let’s see some final encouragement. Come on folks! This is priceless entertainment. Okay yes it is also shameless promotion, but it’s all for a worthy cause. Just remember… we used to think that cancer was something only other people and their kids get. Think about it. Not for too long though. So far we have raised just over AU$ 200 in sponsorship for the Leukaemia Foundation. The video of these hair day events here online has got to be worth at least AU$ 1000. Go on… let’s do it!

Nevertheless I think she was relieved to receive the Mom’s taxi call from Cam at lunch time and to hear that he was okay, apart from the heat that was beginning to get to him and a sore throat. Mouth ulcers and sores throughout the digestive tract – that can easily become infected – are a common a side-effect of chemotherapy, which is why Cameron has an oral care routine that he has to perform with two different treatments four times per day.

When I asked Cameron how his first day back was he gave his trademark response, “Fine”. Then I asked him what was different about today than other times he’s been to school? He replied, “It was weird”. “In what way was it weird?” I asked. “Getting back into the routine after so long and just being there at school in a wheelchair… was all kind of weird”. Of course lots of people greeted and welcomed him back to school and so all in all, it was a successful day. Cameron reconnected with his school mates as well as his teachers and can start thinking about how he is going to perform the academic equivalent of his chemotherapy rebound later on in the year.

Tomorrow its back to Brisbane for a visit to oncology outpatients and the final chemo treatment of this second cycle. This particular medication doesn’t tend to cause nausea, but was responsible for some fairly nasty aches and pains deep in his bones and in various location last time around. We can only hope and pray that the substantially heightened side-effects that Cameron experienced during the first part of this cycle – in comparison with the first part of the first cycle – are not an indication of things to come tomorrow, because he really had a lot of pain last time.

Owen stayed with Gran yesterday morning and I dropped Carlton with a friend for the morning while I did the round trip to Brisbane. Cameron was in pretty good spirits when I arrived, but was still suffering a little nausea when discharged from the hospital. On the way out we visited the ward where his friend ‘M’ is and who now has a nasal feeding tube fitted as he is refusing to eat and although he is not much younger than Cameron, he is half his body Lose Weight Exercise. Leigh went up to intensive care to check in on ‘A’, who was brought out of an induced coma that morning following the surgery on her nose and cheek and who is doing well considering what she is still going through – while I wheeled Cameron over to the lodge to collect our things.

However, by the time we arrived at the lodge it was obvious that the looming prospect of moving such a distance from the hospital was causing him a great deal of anxiety as he began to experience symptoms similar to those he had the day he was released from the ward for the first time and I ended up rushing him over to the emergency room. So, we slowed our exit from the hospital grounds and gave Cam the opportunity to catch his breath and regain his composure as we loaded the contents of our second home into the car. We didn’t need to complete our exit from the lodge until this coming Wednesday, when Cameron is due back for his next chemotherapy treatment, but we decided to take the time to clear out completely. We were amazed at just how much ‘stuff’ we had accumulated! By the time we had done that and made a stop to service Cameron’s yearning for KFC, and driven the 90km back home Cameron was exhausted. Actually, we all were.

Everyone arrived back home within 10 minutes of one another and there was great excitement all around although it was something of an anti-climax for the little ones because Cameron was not exactly a barrel of fun as he had no interest in doing anything except rest. Nevertheless, it felt good to have everyone back under one roof, but something Cameron said some weeks ago rang true in my heart. Things are not the same. On that day when he was last home, on the 5th of February when he was diagnosed with cancer, Cameron was clearly still just a little boy. Today, less than 5 weeks later, he may not yet be a big man, but he is certainly no longer a little boy. He has a great deal on his mind. With the second cycle of chemotherapy more or less behind him Cameron now has more insight into the nature of the remaining journey that lies ahead. I also know that if I were in his shoes I would certainly not be looking forward to that.

A little more insight into the depths of the emotional journey that Cameron is on was revealed to me today. He has been so looking forward to returning to church. Within minutes of entering the church grounds this morning, news of his presence spread quickly and was soon announced. Cameron was so warmly welcomed back that at one point he just broke down and sobbed uncontrollably as the emotional dam that has been so quietly building inside him finally broke. Again he has astounded me by demonstrating a level of emotional maturity that stretches well beyond his 11 years, which was so clearly evident when happiness and gratitude flooded his consciousness.

We are all so excited at the prospect of all being reunited at home once again…  Cameron will still need to visit the hospital in Brisbane quite frequently and will be admitted for the 3-4 days at the commencement of each new chemotherapy cycle, but for so long as he remains without infections or other complications he will be living at home. At this point it seems there isn’t much else to say except a huge thank you to the countless people who have been so incredibly supportive and of course to our God. We simply cannot thank any of you enough. Cameron still has some way to go in this journey, but your prayers and encouragement have made a remarkable difference already

Meanwhile I have finally managed to pull a collection of recent video material together, which I think provides a reasonable summary of the events to date. Enjoy.

Cameron did manage to score a private ward this time around, in the bone marrow transplant unit, which is an especially sterile, self contained ward with a small number of private rooms within the oncology ward. These rooms overlook a lovely courtyard filled with tropical plants and a small pond, which the nurses call the fairy garden. Being here meant that both Leigh and I were able to spend the night at Cameron’s bedside, which felt like a real treat compared with the more open ward arrangements, where restrictions limit one adult to overnight bedside sleeping. I definitely had the best of the two sleeping options on a proper, well… foam mattress, whereas Leigh had the lazy-boy recliner, which is great for watching telly, but not really conducive to a good night’s sleep. I think she managed two hours. I’m not sure Cameron managed much more.

First thing this morning Cameron was feeling much better and perked up for about 10 minutes, managing to sit up and have a good hearty laugh when the flash from Leigh’s camera set off the special sensor that operates the water in the sink (as opposed to regular tap – to prevent the spread of germs). So each time Leigh took a picture of Cameron the water came on. Cameron thought it was hilarious. However, within 10 minutes he was feeling ill again and his temperature had dipped, but he had to wait a little while until he was allowed more of the medication that works against the nausea. And while he was laying there the nurse came in and asked him “How are you doing Cameron?” He delivered his trademark response, “Fine thanks”. Of course you could tell just by looking at him that he was nothing like fine. His spirit is just irrepressible and we are so proud of our little man.

Leaving the hospital to return to home today was very difficult. He was sobbing as he told me how he is scared. I reminded him of the nature of the journey he is on and that we’re all right there with him, but also how proud we are of the way he has been handling his situation and his attitude, which would ensure that he got to the other side of all this. There’s no question about what he is afraid of. His little friend ‘M’ who is around the same age as Cameron, has Leukaemia and is really having a very hard time and lately, for over a week, refusing to eat as he can’t stand throwing up anymore. His parents are distraught as he has lost way too much Lose Weight Exercise and his system is completely run down, to the extent that had to be readmitted to the ward and will need to be force fed by the end of the week if he doesn’t get himself restarted on the food.

Then there is the saddest of sad stories. A little 7 year old girl ‘A’ who had Leukaemia three and a half years ago and was cured. She was recently re-diagnosed and after a few early rounds of chemo, in fact on the day Cameron was released to the lodge, she was given the all clear. She still had some way to go on her chemotherapy, but in the past week developed a number of terrible complications, including a badly infected bowel that is so swollen the morphine has little effect on the pain, which has also prevented any further chemotherapy and opened the door for her cancer to return. Then last night she suddenly had to undergo emergency surgery to remove parts of her nose and cheek due to a fungal infection underneath the skin. There are real concerns about her survival and if she does, she will require facial reconstruction surgery. Leigh has become quite close to the parents and been comforting them.

This evening Cameron is still not feeling great. His potassium count is down, which means they have to give him an infusion of that tomorrow and he remains very emotional, but is also very proud of the fact that he has kept his lunch – a croissant – down. He remains hopeful that he can be home sometime over the weekend. I’m not so sure. Let’s hope he can pull off a come-back like the last one. Carlton’s shingles have cleared up nicely (in case you hadn’t already gathered). Both he and Owen are fine. Carlton has taken to fund-raising for the Leukaemia Foundation at school and promising to colour his hair for the event. Today I received a visit from a local newspaper reporter. They are helping to promote the Shave for a Cure event that is being promoted here on this site and so they’re doing an article on Cameron, so I hope we will get lots of visitors to this site donating to this most worthy cause. 

Cameron’s second cycle of chemotherapy began in oncology outpatients today and everyone was hopeful that he would remain an outpatient by the end of today after apparently taking a cocktail of 5 treatments administered via his central line in his stride by early afternoon. However, as I write, sadly Cameron is not well at all.  He is being admitted to the ward right now and I am going to go back down to Brisbane in a few minutes to be with him. When I spoke to Leigh a few moments ago I could hear Cameron sobbing in the background. Sorry, have to cut this one short. I’ll post again as soon as I can.

Cameron still has a bit of nasty cough and still gets odd, or rather inexplicable aches and pains in his legs and elsewhere but he is remains in good spirits. When I spoke to him on the phone earlier he was very cheeky! Amazing really. Until not very long ago it would have been perfectly natural for us to have interpreted cheek from Cameron as a bad thing. Now we cannot interpret it as anything but a sign of health! Go figure… Cam has developed a penchant for hot chips and chocolate… which isn’t actually the ideal diet for him to be following right now. He needs to be in the best shape possible for the start of his next cycle of chemotherapy, which begins Wednesday. Leigh was telling me that she didn’t want him eating too much chocolate because, to quote: “it has zero nutritional value”. Personally however, I find it impossible to believe that something which tastes so good could possibly have ‘zero’ nutrition… That was all it took. Ha ha. Actually it’s quite a serious issue because some kids come out the other aside of chemo with diabetes… so we’ll have to find a way to get Cameron to slow down on the chocolate.

Meanwhile I had to come up with a strategy for keeping the boys busy this weekend to distract them from the fact that they are unable to visit Cameron or Mom. Yesterday Owen was invited to the birthday party of one of his classmates, which was held at Aussie World, a local theme park that is ideal for the younger kids. So I told Carlton to invite a friend and I’d take them all along to Aussie world. In true Carlton style he ended up being accompanied by two friends. A good time was had by all and Owen’s favourite activity was definitely the dodgems, which he dragged me onto at least a dozen times. The funniest thing was that he failed the height test, which meant he had to be accompanied by an adult and wasn’t allowed to sit on the driver’s side of the two person car. There wasn’t any rule saying that he could not drive though… so I just let him sit on the passenger side and have the wheel… He absolutely loved it.

Today I was going to take them to the beach, but after church they invited themselves along to Rod and Gabby’s who looked like Pied Pipers on their return home. Turns out Rod’s brother in South Africa had lymphoma about 12 years ago and is today fit and healthy. Also Gabby’s father in South Africa was recently diagnosed with lymphoma and is at a very similar stage in his treatment as Cameron is. Only difference is he is almost 70 and I understand that he is not at all well, telling Gabby this morning that he feels like he is dying. Our prayers are with him and all of Gabby’s family. Which got me thinking about just how many people are affected by cancer and how incredible it would be if there was a vaccine, or at the very least a treatment without the severe collateral damage associated with chemotherapy. So, with my beach plans trashed I found myself online at the Leukaemia Foundation site and I have setup a group for the forthcoming “Shave for a Cure” event. Please do not feel obliged, but if you can donate, or you’re in a position to participate it would be nice just to see how much money all of you fantastic supporters of Cameron can raise in his name. Besides, it would be nice to know who else is going to join Cameron and I with bald heads on the day….

Amen.

By the time I arrived in Brisbane late yesterday Cameron’s hair was beginning to show up in meals and generally starting to cover everything from clothing and furniture. A rather large bald patch was also taking shape right on the very top of his head and beginning to spread. Leigh told me that earlier while he was having treatment at oncology outpatients Cameron was entertaining the other little kids and had them in stitches with his animated “You guys are making me tear my hair out…” routine. Apparently it was hilarious as he was literally grabbing handfuls of his hair and pulling it out. Anyway, within 5 minutes of arriving at the lodge yesterday I had those invisible hairs all over my face and in my mouth and by that stage Cameron had clearly enough of the hair getting into everything and he was ready for the electric razor.

You can see the result… a solid #1. He opted out of the skin close shave so that he could have tyre tracks carved into the remaining hair with the special narrow shaving attachment that comes with the razor. In the end he decided he’d rather have the Queensland Reds logo across the back of his head. Unfortunately his hair is so blonde that the result just doesn’t show up in photographs, but he is proud of it. Shaving his head like this was far more of an emotional experience for me, as well as Leigh than for Cameron, who laughed and joked throughout the whole procedure. I think it must have been the symbolism of the event more than anything else that required us both to make a conscious effort to choke back the tears, whereas Cam now feels like he is a fully fledged member of the chemo kids’ clan when he visits the outpatients’ clinic.

Cameron still has a very nasty cough from his partially collapsed lungs, but he remains in very good spirits in spite of this and the lingering infection around the entry point in his central line, which is also responding quite well to various antibiotics. His deeper concerns, however, remain just below the surface. As he lay in bed quietly for some minutes yesterday evening, listening to one of his current favourite CDs – Nickelback – without the distractions of electronic games, etc.. he became a little tearful and said to me “Nothing will ever be the same…” I told him “Yeah, you’re right. Things won’t be the same, they will be better. Just think about how much you have to offer other sick kids right now.” He thought for a moment and as that trademark smile spread across his face he said “Yeah”. At that moment I realised he already knew all of that. What he needed was the same thing we all need from time to time, which is to have our beliefs, hopes and dreams independently validated.

And speaking of dreams, Cameron tells me that his ‘make a wish’ has changed from swimming with the dolphins at Seaworld to something much more ambitious… He has now decided that he wants to go on the show Mythbusters, which he has been a mega-fan of for years. When he told me this I asked “Hmm. So you want to visit the set where they make the show and see what goes on behind the scenes?” He responded with an emphatic “No. I want to go on the show.” He’s not just telling me this. He is saying it witha real aura of expectancy. What was that I said about about dream validation?

Finally, while Leigh and I were in Brisbane overnight, Ingrid became concerned about a rash on Carlton’s back. Leigh called an angel, a personal friend who is also a doctor, who left her own young family to make a house call for Carlton at 7.30pm. We learned that poor Carlton has developed a rather painful case of shingles on his back, which is directly related to stress and also somehow associated with the chicken pox virus! This introduced two disappointments today. First, none of us in the house with Carlton, including Carlton himself of course, are allowed to visit Cameron until the shingles have cleared up. Second and somewhat more distressing is the realisation that Carlton is taking enormous strain from all of this stuff going on around Cameron. He is missing Leigh and Cameron terribly and has a great deal of anxiety about the current situation, which seems to him like a dark tunnel with no light visible at the end and he is also now worrying about illness in general and everyone’s mortality.  Thankfully the school (SCGS) have swung straight into action with counselling today and a schedule of regular sessions to follow until Carlton is better able to cope.

Again we are reminded to remain vigilant. We must defend our faith – keep our hearts and our minds open and receptive to the will of God. Clearly, the invasive nature of cancer is not strictly confined to the physical body of the sufferer. It is a stealthy enemy that seeks to undermine the confidence, emotional and physical well-being of those family members who bear close, sensitive attachments. But for faith it would see us all perish. Our faith however, shall see it turned upon itself. At every turn it seems we are being challenged to deal with one situation or another, for which we might otherwise feel quite unprepared and if not overwhelmed, but almost immediately one, two, five or more angels appear on the scene. They know who they are and we remain ever so grateful for their presence.

So Cam met with his senior oncologist who summed up her view of Cameron’s current condition using the following language: “All things considered he is doing extremely well“. She said that Cameron has responded incredibly well to the treatment – in the most positive and unexpected way – in fact, far better than she would ever have dared to imagine. Of course, Cameron’s faith, determination and character have all played the most amazing part in all of this and she congratulated him on how exceptionally well he has been handling his situation and suggested he give himself a great big pat on the back. To which he replied “I can’t reach”. I guess that sums everything about the character that Cameron is now so incredibly quickly growing into.

She also explained some more of the details surrounding Cameron’s current chest condition and his partially collapsed lungs. The tumour, or mass had already reduced his lungs to around 70% of their normal functioning capacity when he was admitted and now that the mass is reducing, quite dramatically according her assessment of the latest x-rays, it is allowing his lungs to return to their usual shape and position, but since they’ve been subjected to this invasion it is going to take a little while for those parts of his lungs that were worst affected to regain their normal strength and functioning capabilities. So in the meantime he is developing a very nasty cough that is today sounding like a barking dog. We are assured that this will pass as his lungs regain their composure.

In spite of the fact that his chesty woes – including a shortness of breath whenever he walks anywhere – are accompanied by a nasty infection in the area that his central line enters his chest – requiring that his dressing be changed every day now – mouth ulcers; hair that is starting to fall away from his head; swollen facial features and headaches when he wakes up in the morning and as of today shaking hands… Cameron remains in incredibly good spirits. That is not to say none of this gets him down from time to time, but whenever anyone asks him how he is doing he automatically responds with “Fine thanks”. I can’t imagine that I would be saying the same thing if the tables were to be turned.

Of course, Cameron does naturally continue to ponder the source and meaning of all of this. I suspect more than we realise. I just can’t imagine what it must be like to be 11 years old and contemplating your own mortality through the experience of suffering through the cure for cancer. Recently Cam asked Leigh “Why did God let me get cancer?” Of course there are no simple answers to that one, but it wasn’t far into the subsequent conversation about how God has a plan for each and every one of us and our inability to fully comprehend the depth of His love for us and His incredible, unfathomable awesomeness that he arrived at his own conclusion, which was that when it was all over he would be in an ideal position to help other kids. Wow! That can only be a plan hatched in the universal heavens above.

On Friday evening Carlton, Owen and I changed places with Marianne and Gran as Marianne flew back to Sydney and Gran spent the weekend on the coast where she swept through the Smith residence cleaning, washing and ironing, while we spent a family weekend at the Leonard Lodge loosely tethered to both the oncology ward and emergency room. It seems there’s never any shortage of anxiety and drama when it comes to Cameron’s condition as we had to take Cameron down to the emergency room no less than 3 times over the 30 hour period between Saturday and Sunday. He awoke with a headache and a rash around the lower part of his neck, which was also a bit swollen; the wound in his chest where his central line is located was also looking a bit infected and he had a new pain in his groin and just wasn’t feeling well.
 
Blood tests confirmed that Cameron’s immune system is now where it is expected to be, which is right down at the low end of the scale. That means he is extremely vulnerable to well, anything really. He is not quite neutropenic, which is the clinical term used to describe the state of the immune system when it is absolutely defenceless, but his neutrophil count is approaching borderline, so a simple cold virus can quickly develop into pneumonia and even the common bacteria that occur naturally in the body can cause severe infection to his system. Later on, after Cameron was given the all-clear and sent back to the lodge, I took him back again as he seemed to be deteriorating. This time they removed the dressing on his central line and cleaned it, which was extremely painful and he cried a few times as the antiseptics went to work. They took a culture and the results will be known tomorrow. He also got given some more antibiotics to supplement the ones he is already taking.

By lunchtime today we had decided to take him back again and this time he was x-rayed, which showed that part of his lungs had collapsed as a result of the mass on his chest shrinking – so a nasty development that isn’t entirely unusual and we are told, is a positive development. So he is back in the lodge once again. A few of the nurses have begun to recognise Cam. One of them yesterday came to see Cam in the cubicle where he was being examined, specially to tell him that she and another nurse were talking about just how special and what a nice person he was, so she decided to just come over and tell him that. And today another one hand wrote a sign with his name on it and posted in the cubicle that he seems to always be wheeled into whenever he comes to the emergency room. Cameron has such an incredible impact on just about everyone who comes into contact with, from nurses, to doctors and cleaners – doesn’t matter. They all immediately warm to Cam’s sense of humour and his courage, which are all quite impossible to ignore.

Returning home to the coast this evening was very hard. Our good friends from the Gold Coast, the Paine family – whom we first met when Cameron and Carlton played at Cobham rugby club in the UK – are returning to live in the UK and came to say hi to Cameron as well as to say farewell. That was immediately followed with our own farewells to one another as Carlton and Owen start another school week tomorrow and I desperately try to reinstate some sort productive routine around my work. There wasn’t a dry eye in the house.

He also received a lovely paint set and a pad of art paper from his class teacher of last year, Miss Smith, which also went down a treat. He also remains over the moon about his visit from the Queensland cricketers and relished telling me the story of one of the fathers on the ward who, upon seeing his bat signed by the entire Bulls team, instantly offered him $100 for it. Cameron refused to sell. By 7.00pm he was ready to make his move from the ward to the lodge, which is a self contained apartment on the hospital grounds. He was very excited to be getting out of the ward, although we were somewhat apprehensive because he had a dizzy spell when putting on his shoes. Nevertheless, he insisted he was okay so we got him into a wheelchair and took him to the car then drove him the few hundred metres to the lodge. He is very weak.  Just being in the car felt like a whole new experience to him.

In fact, he was so delighted to be out of the ward that for a couple of hours he had verbal diarrhoea… which is always a sure sign that Cameron is excited. Clearly he has been watching a LOT of television and is very up to date on all the current affairs, including the goings on of errant sports stars and other celebrities, as well as the US election campaign, which he has his own opinions on. I understand from Cameron that Hillary is someone that “Hillary Clinton is a good person. People love her because she cares about people”.   Okay… Hillary, it seems your PR is working, except at home… Everyone is constantly amazed at Cameron’s general knowledge and particularly the doctors, some of whom are quite stunned at his ability to quickly grasp some fairly complex medical concepts and he’s not afraid to ask questions and for explanations of how, why and so on.

Unfortunately, they seem unable to explain, today, why the whole back of his head is sore to touch… He saw a doctor today to see if they could explain this, except to say that it is almost definitely linked to the chemotherapy. Anyway, like everything associated with this entire experience, Cameron is enduring looking forward to his next big step, which is to get home. We just don’t know when that is likely to be, but we’re hopeful that it may be as soon as next weekend, but he will need to return to hospital for his next round of chemo soon after that, but with a bit of luck he may get to spend a day or two at school during that visit home and reconnect with his mates. The headmaster of the school, Sunshine Coast Grammar, has also arranged a special prayer meeting for Cameron, in the new school chapel next Wednesday and hopefully I will be able to record that and publish it here. This is also a very minor chance that Cameron himself may be able to attend, but we’ll wait and see.

The big news and excitement for Cam today was a visit from two members of the Queensland Bulls cricket team! I wasn’t able to attend, but I had been called a few days ago to confirm a suitable date, which we didn’t relay to Cameron so it was a lovely surprise for him when Ashley Noffke and Clinton Perren rolled into the ward bearing a cricket bat signed by the entire Bulls team as well as player cards and a couple of caps – all of which went down a real treat.

Apparently Cameron didn’t stop smiling for about 2 hours after the guys left and when I spoke to him on the phone shortly afterwards I could hear the uncontrollable grin. He was given two player caps. One new one and the other he is particular proud as it is “The one that Ashley has been using all season.” Cam reckons it’s still got his sweat from last weekends’ game… Err, way cool cap Cam! To say he is absolutely thrilled by all of this would be a huge understatement. Thanks Ashley, Clinton and of course to Carolyn Bindon for making all of this happen.

Finally I have managed to discipline my scanner and upload the image I was bragging about over the weekend, about how much Cameron’s cancer had regressed. You can see from the image here the stark difference in the density of the tumour, or mass (really not sure which of these terms is clinically correct, probably neither) between 5th February (left image) and 15th February (right image). The central line, used to administer the chemotherapy is clearly visible in the image on the right.

The lodge is just a 200 metre walk from the ward and within 30 minutes of arriving at the apartment Cameron’s eyes went very bloodshot and he began to feel ill. Then he went very gray, started throwing up and twice passed out on his feet in the bathroom and fortunately I was there to catch him each time, so I picked him up and carried him most of the way to the emergency room where he was given oxygen, put back on a saline drip and within 40 minutes or so he was once again back to himself. The entire experience terrified all of us, but it was particularly upsetting to Cameron, as well as to Carlton, who feared the worst as we all jumped into action with me carrying Cameron – who now weighs almost the same as Leigh – and Leigh calling the ward and Gary calling 000. Then, as if the adrenalin fuelled intensity of these infinite moments were not quite enough, about half way to the emergency room Cameron whispered into my ear “Thanks Dad” and at that moment I realised just how close to the edge he was feeling.   

The doctors aren’t entirely sure what specific physical event caused this episode, except in broad terms that it is related to the chemotherapy. While we were still in the emergency room and minutes after he came off the oxygen having regained his colour and his sense of humour, one of the girls from Cameron’s school class dropped in to hand deliver an A4 envelope filled with colourfully decorated, handmade get well messages from his class mates. He was absolutely thrilled and grinning from ear to ear for about an hour as he was once again reminded how many people care about, are thinking of and wishing him a speedy recovery. When the doctor told him he’d have to stay for at least another couple of days he couldn’t hold back the tears. An hour and a half later Cam was back in his bed on the ward and not at all impressed. He had been longing to come out. More so than we had realised, but the PSP certainly took the edge off of that. I got to spend a second night camping next to his bed, holding his hand and although a 4 month old baby in the same room kept us awake from about 2.00am the disturbance really didn’t seem to matter much anymore.

Such is the world of chemotherapy that the frightening event of Saturday was actually only one dark patch on an otherwise relatively bright period of Cameron’s recent journey. We finally got to see one of his recent chest x-rays taken on Friday. It revealed a remarkable reduction in the density of the tumour since the initial diagnosis (I’ll post comparative images here so you can see). And generally speaking Cameron has been coping exceptionally well with the chemotherapy even though it has certainly been taking its toll. For example he lost nearly 5% of his body Lose Weight Exercise in just one 24 hour period late last week and the chemo has caused him to experience headaches, vomiting of course and some of his joints ache. He is also suffering from early stage mucositis, which causes ulcers in the mouth, throat, stomach – in fact throughout the digestive tract – as chemotherapy disrupts the reproduction of the epithelial cells that line this system.

Nevertheless, the steroids he is taking also have a welcome side-effect, which is they make him hungry so his appetite keeps bouncing back, even though the experience of eating is not particularly pleasant and not at all helped by a jaw that aches so intensely that he is barely able to open his mouth to insert food and a throat that doesn’t want to deal with it. Nevertheless, Cameron remains in good spirits and positively focused. For the most part he is so incredibly up-beat that it is frustrating at times, because so many times when the doctors ask Cameron “So, how are you doing?” He responds as if it’s a social greeting, with “Fine thanks”.  Meanwhile he’s got all this stuff going on… We’re trying to get him to understand that it is important for the doctors to know what specific things are going on with his body right now without turning him into a hypochondriac, since this probably contributed to him being allowed out too soon. You gotta love his attitude.

Cameron has blood tests taken 3 times per day and no results to hand so far today, but the doctors plan to review his overall condition tomorrow when they’ll decide whether or not it is appropriate for him to continue the next stage of his treatment as an outpatient. We have to wait and see…

As far as the cancer itself is concerned Cameron is well and truly off the critical list, which is to say that the shocking size of the mass in his chest at the time he was diagnosed is no longer life-threatening as it was essentially crowding out his lungs and heart and so affecting their ability to do the things we seldom think about, but which are rather important. Last night Cam slept laying down flat for the first time since he entered the hospital, which he wasn’t able to do up to now without experiencing difficulty breathing and general anxiety. Clearly the development of the mass has been thrown into reverse and this progress is being monitored via regular x-rays. His heart functions as well as the fluid that formed around it are being monitored every so often using ultrasound. Everything going into his body and everything coming out is being monitored and analysed.

Cameron is so incredibly fortunate to have avoided what the oncologists refer to as the close cousin of Hodgkin’s lymphoma, which is leukaemia. These kids appear to have it much tougher and that seems to be partly due to the fact that as a disease of the blood it is so incredibly invasive and often remains undetected until a great deal of damage has already been inflicted. Cameron’s stage of lymphoma does not appear to have developed beyond the chest area and so there is a much greater degree of target clarity. The medical team know more or less where it is and although it is hard to visualise in a 3 dimensional form, visually it is quite well defined and confined to a particular area of the body. If only the chemo could be concentrated on that…

If you’re wondering just how large this lymphatic mass in his chest is and what form it takes, just check out the images I’ve uploaded today. The one the left is the standard x-ray image. When I first looked at it I thought, “Okay, so where is this lymphoma?” Then the oncologist outlined the area inside the green shape in the right hand image and it broke our hearts. I can’t wait to see a more recent image. In the middle is a diagram that provides quite a good 3 dimensional representation of the lymphatic system, which is illustrated in green.

Unfortunately, the term shrinkage is used rather loosely, because this most unwelcome mass in his chest will actually break up and exit his body via the usual channels. That means his liver will come under pressure to process all of this stuff and there are a number of nasty and fairly common complications in this department associated with the treatment of lymphoma. It exists alongside a collection of potentially severe collateral damages that are more directly attributable to the chemotherapy itself. These can affect a variety of vital organs and take days, weeks, months and even years to show up. Lord I pray that Cameron will be saved from all of these things.

To think that just a little over a week days ago Cameron was in ICU and only yesterday we were being told that it would be at least 4 weeks until he might, perhaps be allowed home for a short visit… At first, when the nursing staff started making arrangement to discharge Cameron we immediately became anxious and started to resist the move… Then, over the next couple of hours we realised what was happening! Here we were, questioning the miracle we and so many people around the world have been praying for, which we have obviously been granted.  There isn’t much more to say right at this moment, except thank you Lord. 

  

Now that we have been formally inducted into the society of somewhat educated parents of a Hodgkins sufferer I am beginning to understand what this ?stuff? is and I feel an entirely new pharmaceutical vocabulary coming on. Drugs like Doxorubicin, Bleomycin (I and II), Vincristine, Etoposide and Cyclophosphomide are the ones that largely define the so-called ‘Big Guns’ of the chemotherapy treatment plan that Cameron began to follow today. Unfortunately I needed to get the kids home shortly after Cam had his first cocktail of 3 of these drugs, with more to follow in the hours following. Leigh told me about an hour ago that he was now sleeping and had taken the first round really well. The doctors and nursing staff have reminded us on a number of occasions that for some of the side effects they have a set of counter-measure options – more drugs they can use to minimise nausea, etc.. – some of which can themselves require counter-measures.

Anyway, seems Cameron is in for 4 more weeks on the ward and then he may be allowed out, but the oncologist has said that he is likely to be in a condition that requires him to be confined to the Brisbane area, which means he probably won’t be allowed home at that time, before he returns to the ward for the next treatment cycle. Let’s see if we can pray that limitation away, because in the midst of all the goings on with Cameron and the family shake-down we’re experiencing right now, we are so evidently blessed. God is here. We know this because He has sent so many friends and other people – including some we’ve never even met – to our rescue. Folks from the church as well as parents and staff of the school, have all been stepping in and offering to do stuff and in many cases just getting on with it without seeking permission. It’s really made me stop and ask myself “Where was I when stuff just like this was happening to other people around me?” From little things like a call to see how each of us are doing and a text message to say we’re thinking of and praying for you, to lovely cooked meals ready for the freezer – including KFC delivered just in time for dinner – all the way to offers of financial assistance. It’s all rather overwhelming to be honest. I do hope I live long enough to be such a blessing to at least the number of people who have touched our lives so deeply just in the past week or so.

Finally, I have to say that I have been thinking that this saga exemplifies the stuff that only ever happens to other people, especially when Cameron told me what he had wished for from the Make a Wish Foundation. All I can say to anyone out there who continues to think that these things only happen to others is… mate… get your house in order a.s.a.p. Look for and make peace with your God and by that I mean our God. You know, that non-denominational one that holds your conscience in the palm of his hand. Making peace with Him doesn’t mean preparing for the worst. On the contrary, it means preparing for the best, because you’ll discover as we are now, that no matter what is going on in your life, the best is always yet to come. It isn’t always easy living in that space between what we know and what we feel we should be doing, until we can walking in faith. The trick, I suppose, is not only to practice looking up, but to avoid the temptation to look down… Thank you to all you angels for helping us to keep doing that.

Of course Cameron did not emerge green, but was in very good spirits considering all that he has been through, including the pain and stiffness he is experiencing in a number of places from the theatre experience of yesterday. So, the kids played a few bedside games together as we began waiting to find out what the scan had revealed about the full extent of his cancer; what the treatment plan was and when it would commence. The ward was also really busy today, with a new arrival brought in by air ambulance from Nambour, but we were also brilliantly entertained by a couple of lovely volunteer clowns who had the kids rolling around with delight as they blew bubbles, sang wiggles songs and told jokes like: “Why did everyone leave Burger King? Because someone dropped a wopper!” And… “Why do fish swim in salt water?” ‘Cos pepper makes them sneeze!”. Tee hee.

Then Cam got the the ReMISSION computer game – specially configured to do battle with Hodgkin’s Lymphoma – loaded onto his hospital-school assigned laptop and as he commenced playing he proudly told me that the occupational therapist had told him he would be the youngest person to have played the game with that particular configuration, because that particular cancer is more common among older kids and adults. After a lot of shooting, explosions and the usual all out mayhem fun of pc game warfare that had him intensely concentrated for about an hour or so, he quietly closed the laptop, set it aside and began staring rather blankly at the television with his now very back-ringed eyes. “How was the game Cam?” I asked. “It’s really, really hard” he replied.

Leigh and I spent an hour and a half with one of the more senior ward nurses who walked us through each page of the manual on coping with childhood cancer, which was probably one of the most unwelcome educational experiences that we will ever be so grateful to receive. I won’t go into all of the gory details, save to say that the A-Z of the childhood cancer sets a very unpleasant course for Cameron over the next 6-8 months. It predicts everything from the mundane loss of hair, raging temperatures and vomiting with blood showing up in places where it shouldn’t be to infections that might only cause other kids to feel a bit off, but which will be life-threatening to Cam and emergency blood transfusions to raise his platelets when his immune system is completely wiped out and a simple nose-bleed becomes unstoppable. And as soon as he recovers from one round of that and starts to feel better again, the next round will begin. Cam was right about the game.

Then it was time for the four of us to head back home and still no news. Leigh is feeling very tired and I hated leaving her there another night. I sternly instructed her that tomorrow was it… she was coming home to get a good night’s sleep and I would stay at the hospital. End of story! Ha ha. Ahem… the illusion of control that I have been so carefully cultivating over for the past 20 years or so was instantly shattered… She is not moving until we’re further down the track! So, while Leigh’s Mom and perhaps Owen will be with Leigh and Cameron during the day tomorrow, I’ll be negotiating Carlton into school, doing a spot of grocery shopping for our two households and getting on top of the mountain of unopened mail and tackling a little work before collecting Carlton and Tyler who is one of Cameron’s friends after school and making another round trip to see Cam in the late afternoon. On the way back we’ll collect Radar, the dog, who has been on holiday at Paul and Lara’s in Caloundra, which should leave me just enough time to post the next update.

Okay, okay the PET scan result… GREAT NEWS! This evening we have been told that Cameron’s cancer is presently confined to his chest. There are no signs of it anywhere else AND the tumour, mass or growth thingy that has invaded his chest has already shrunk a noticeable amount AND it is not as dense as they were expecting to find it! So… some fabulous news. Thank you Lord!

While he was under Cam also had bone marrow removed from two locations on his lower back and so when he woke up he wasn?t too impressed with all of the stuff that had gone on in his sleep, but he was ravenous and tucked straight into a beef salad sandwich and some hot cooked chips very soon after waking up and ate all of that while he was still a bit groggy. A good sign I suppose. He is now unable to turn his head left or right due to the injuries he has on the left (due to the biopsy) and right sides of his neck now. He is just handling all of this so incredibly well. Better than his parents I reckon. Anyway, all of this means that his PET scan will go ahead first thing tomorrow morning, which is also great news, because the oncology team need the information from that to design a treatment plan in which they have maximum confidence.

The occupational therapist came around after lunch and was somewhat concerned that Cameron wasn?t opening up and asking the questions that are on his mind, about his illness and about the treatment, etc.. Apparently he was happy to share his concerns a few days ago, until one of us parents came along and then he just shut down. It seems he is deeply concerned about the impact all of this is having on us and is trying to hide his concerns from us, in order to somehow protect us. Today he started asking questions like: “How much is all of this treatment costing?” and “How much does medical insurance cost?” So we were encouraged when the OT spent some quality time with him later in the afternoon and got him to open up about all of his concerns. She not only walked him through an illustrated kids book that explains all about cancer, Lymphoma and chemo therapy, etc.., but also left him with an awesome computer war game to load onto his laptop, called “ReMISSION” where he gets to battle Hodgkin’s.

We also finally got our first brief education in the chemo-therapy with more to follow tomorrow. Uurgh… It’s some very serious stuff and actually very toxic. So much so that when the nurses prepare the doses they have to wear special protective clothing and masks, rather like theatre gear, to ensure they don’t get ill… It basically knocks out all of the cellular players involved in the cancer war that is going on inside Cameron, targeting of course the bad guys, but to quote “there is a lot of collateral damage”. It is likely to be administered both orally and intravenously over 1-4 day periods that are repeated over a 21 day cycle. Severe nausea and hair loss are some of the more pleasant side effects. After 21 days the patients’ system is given the opportunity to ‘recover’, at which point the cycle is generally repeated, again and again and again… in Cameron’s case over 6-8 months. All of that is likely to kick off tomorrow afternoon, if not the following day.

We are all dreading it and none more than Cameron. It’s absolutely heart-breaking to find yourself hand-holding your child into all of that. Oh God, please make all of this go away.

Just a few days before Cameron’s admission I was doing a little financial juggling to make sure there were just enough funds in an account to meet a direct debit car payment that was expected the next day. Nothing particularly unusual about that, except the next day I routinely checked to confirm the payment had been processed, only to realise that I had failed to take into account our family medical insurance, which hit on the same day, immediately before the car payment. I mentioned to Leigh how frustrated I was about this as it had thrown a curved ball into my plan. A couple days later as we sat there in the emergency room completing all of the administrative paperwork and consent forms I realised that my planning was of little consequence in relation to God’s plan. On that day He decided and ordered our priorities and in so doing ensured that all of the most unexpected, unanticipated and substantial costs of medical treatment for Cameron will unquestionably be met in the days, weeks and months immediately following. Wow!

Which brings to last Monday, exactly one week ago, when I had cause to travel right down into the heart of downtown Brisbane for the very first time since we move over here 8 or so months ago. Having never been down there before I knew that arriving in time for my 8.30am meeting would require something of a navigational stunt, not to mention a juggling act as I had no idea where I was going and the route was spread over a number of pages of the map book. I left at 6.30am and still arrived 30 minutes late… How different life was then. On that particular day if someone had told me that I was covering the exact same route that I would travel every single day since then, because one of my kids would be diagnosed with cancer and be urgently admitted to hospital in Brisbane the very next day, well… not only would I have ignored that as something of a bad joke, but I probably would have made a point of avoiding that person in future.

These incidents have been in the back of my mind ever since Cam was admitted and the daily 3 hour round trip has been giving me plenty of time to think about them. I woke this morning with the realisation that the person I would almost certainly have rejected as some kind of fruit-cake was none other than God. There can be no other, more logical explanation for this downtown driving incident. Think about it. The odds of undertaking a totally unfamiliar journey for the very first time, exactly one day before I would be required to do that for very different and far more important reasons, every day for some time thereafter must be greater than those of winning the lottery. Was He making sure that I was familiar with the route? Was He preparing me for the more important dash we would be making to the emergency room the very next day? Of course. Wow!

The four of us went off to church this morning and as Kate Bartlett so aptly put it, this was a great opportunity to “just soak up some God” and it most certainly was. During the service pastor Phil displayed a photo of Cameron on the giant screens and the whole church stood as he appealed to our loving Father for Cameron’s healing. It was awesome! Many people, including Phil, came up to me afterwards and asked how Cameron and all of us were doing and all were quite emotional. It was difficult, but also incredibly reassuring to see Jesus in so many people and to feel His loving presence. Thank you from Cameron to everyone at Maroochy Baptist Church for your uninhibited outpouring of dedicated prayer, sincere love and caring friendship.  Carlton took the opportunity to invite himself to spend the rest of the day with Dean, Valerie and their kids, while Owen wasn ‘t to be outdone and cracked an invite to go off with Rod and Gabby and their kids, which was an answer to the challenge I began the day with, which was how both Ingrid and I were going to get to the hospital today.

So we got our hour and a half drive down the Bruce highway to see da man… And what a man he is. He has been temporarily detached from his drip, as it seems there is an imbalance between the volumes of fluid going in and coming out and besides, it looks like the main line port will be fitted in his groin tomorrow. Cameron also had an x-ray today to establish whether or not the mass had shrunk at all, however we haven’t been informed of the result, but assume that he is well enough to have the general anaesthetic since he’s been told he is fasting from midnight in anticipation of a trip to theatre. His appetite has returned with a vengeance and he looks so well, but short walks really leave him quite breathless. Interestingly, since his admission all of the eczema and allergy symptoms, which have been consistent features of his existence for the past couple of years, have all but disappeared.

We are also learning more about what having this cancer is likely to mean to Cameron in the weeks, months and years ahead. For example, we learned that the chemotherapy will make him susceptible to the childhood illnesses that we usually get only once in our lives and which he has already had – because they’re somehow registered in the immune system – such as chicken pox. This genetic memory will be erased by the chemo and so Cameron will need to be revaccinated against all of these illnesses. And during the next 8 months or so he is not allowed to venture into busy public places like shopping centres or have contact with anyone who is not entirely well. He cannot walk outdoors without shoes and socks on or eat food of any questionable origin. We haven’t yet finished reading the thick manual we’ve been handed, which is entitled something like “Dealing with Childhood Cancer”. It distills decades of clinical learning and although it is rather hard going, it is reassuring as it describes an holistic process of successfully restoring the health of a cancer patient. It not only calls for team work between the medical and family units, but consistently highlights the connection between our physical health and our emotional well-being.

And every day it seems, we are meeting people in the kid’s oncology ward who are restoring our faith in humanity. Leigh pointed out one such lady today, whom she met earlier. This mother is a foster parent to no less than 10 severely disabled, neglected and or abused kids. They’re kids that nobody wants. Many are suffering from Down’s, like the 4 year old she is caring for now, who looks barely 2 years old and as if Down’s syndrome was enough, also has cancer. Leigh told her that she must be an Angel. I can only agree. It also struck me that we tend to use this word ‘caring’ to describe a single dimension of a person’s character, when actually, it seems there are some people out there who challenge us to redefine the way the word ‘caring’ should be used to describe them, because their entire existence – every dimension – is demonstrably defined by the word ‘caring’. If we could all display just 10% of the ‘caring’ shown by this incredible lady all the problems of our world would be solved by the end of next week.

And the results of the scan appear to suggest that although there appears to also be some disease in the upper abdomen too, his kidneys, spleen, etc. all appear to be clear, which is great news. His is on steroids that the oncologist hopes will reduce the main chest tumour/mass sufficiently by Monday for him to have a general anaesthetic so they can fit the permanent intravenous line, or port, which will stay in his groin for the duration of his treatment (circa 8 months is the current estimate).  These are usually fitted to the upper chest/lower neck area, but the groin location is best suited for his particular condition in order to ensure that the chemo cocktail is able to move around the entire body. The steroids have stimulated his appetite which had been in decline for some time, so another good development to be thankful for.

Of course, Cameron has lots of questions. The obvious one is why? Why me? The answer is not easy to find, but we do know and he certainly understands that this is not of God. Being in the children’s oncology ward has also exposed him to other kids who are at various stages of chemo and all suffering from cancer variants. One was throwing up and having a really bad time in a bed next to him. The impact on Cameron was visible. Where were you on Christmas eve 2007? That was when another 10 year old was diagnosed with Leukaemia. Another that went home within hours of Cameron?s arrival is a 6 year old?diagnosed with ‘something sarcoma’ 7 months ago and given a 5% chance of recovery and has since had a number of ribs removed. He is a cute little bald guy who looks like a?mini Ghandi, but with the attitude and the eyes of a 40 year old.

Already I can see Cameron is also suddenly growing up well beyond his years. In just a few days he has already become a teenager. He is not only thinking deeply and asking a lot of medical questions, but he has also taken ownership of his affliction and now has an intent about him that is as surprising for his years as it is comforting. He has so gracefully come to terms with his situation and moved emotionally into position to take it on. We are so incredibly proud of him. Thank you Lord.

For the past couple of days we have been overwhelmed with good wishes, love and encouragement from family and friends, including many we didn?t even know we had. Cam received a teddy bear signed by his young kids? church friends, as well as a personalized scrapbook and a heap of goodies from a gang of well-wishers that seems to be growing by the hour. We?ve already lost count of the number of prayer chains our family is on already and so it seems so incredibly appropriate and fitting that if you?re 11 years old and you have got to get cancer, and you?ve been lying in a hospital bed waiting for 2 days to find out what you?re dealing with then Hodgkin?s Lymphoma is probably the type you want to hear you have.

Praise the Lord! This is precisely what Cameron has been diagnosed with today. 85% is the early stage prognosis for his beating this thing. Now it is not so much the disease we dread, but the treatment. We have also been informed now that the site of tumor/mass is such that it basically invaded the spaces between all of the organs in his chest such as lungs and heart, chest wall and so on – which has in turn placed an enormous strain on all of these organs. ?Now Cameron must undergo a new round of testing, most of which is aimed at establishing precisely which Lymph nodes are under attack by the cancer and precisely where these are located so that the treatment can be tuned/targeted accordingly.

This includes another bone/marrow extraction; an ultrasound on his heart, another ct scan and the important PET scan. Unfortunately he also needs to lie flat on his back for up to 2 hours for the PET, which lights up all of the nodes/cells that the medical team need to target, but lying down like this is still a very stressful position for Cameron, so he is also undergoing some treatment to try and relieve some of the symptoms that are preventing him from lying down comfortably for such a long period.

Sometime over the coming few days he will also be fitted with what the medical folk call a main line intravenous line, in anticipation of chemotherapy commencing in 4 days. That treatment is likely to make him feel quite unwell at times and loose his hair. Numerous other, more serious side-effects are also possible. Nevertheless, he is also likely to remain in hospital for another 3 weeks or so, with re-admissions for further rounds of chemo and radiation therapy lasting from weeks to days over the next 8 months or so.

We continue to call upon our Heavenly Father, praying for His healing and protection for Cameron in the name of Jesus Christ. Please join us in spirit as we stand before our generous and?loving, grace-filled?God and declare our faith in His almighty power to heal the sick and defend the weak; that?He may bring healing, peace and comfort to?all of those?who are suffering at the hands of this terrible disease. Amen.

Anyway, he has what the oncologist describes as a “massive” tumor, or mass that is almost the entire size of his 11 year old lungs. It is clearly visible on both x-ray and ct scans and very scary to look at. He is in ICU to ensure that he is able to be breath comfortably as today he developed substantial swelling in his upper chest and lower throat, which is basically what set off the alarm bells with the local doctors, who have also discovered fluid in his lungs and around his heart today.

At this stage they’re not sure what form of Lymphoma they’re dealing with, but there is no question about the fact that it is what it is – only what specific type of malignancy and the best treatment plan. He is already undergoing a barrage of tests and tomorrow he has a biopsy on one of the numerous small lumps that have emerged in his upper respiratory area and a bone marrow extraction, which will give the doctors the insight they need to plan the most appropriate treatment over the next 48 hours, when we’ll have a better idea of which side of the 80/20 equation he is likely in.

The most senior, specialist team at RBCH is the best in the land apparently and they have been incredibly responsive to this. The lead oncologist is cautiously optimistic about the prospects of defeat. If all goes according to plan it will be at least 2-3 weeks of hospitalisation, some months of chemo and regular follow up trips to the hospital. We told Cameron this evening, the facts about what is going on – as per the specialist advice. He is taking it all pretty well, considering. I am sure you can imagine the state that Leigh is in and we are both trying really hard to remain strong for Cameron. I’ll try and update as soon as I have more details. Probably a couple of days. Meanwhile, if there was ever a time you may have questioned the merrit of getting on your knees and praying to our Heavenly Father, now is not that time.