August. 2011. Time for an update.. and all is good

Yes, all is well... 1 year and 9 months down..
  Owen is full of beans and life seems to be slowly slipping back into normal routines. Funnily enough, he is going in tomorrow for his monthly checkup, lumber puncture (25+ times under a general anesthetic.. losing count), chemo top up into his port and usual smiley and cheeky catch up with the Day Oncology nurses. We barely know any of the patients as a new group of children go through the same harrowing ordeal with their shattered parents. We smile and are relaxed seeming like old hands at this. Methatrexate.. check,  Mercaptopurine.. check, Dexamethasone.. check, Bactrim.. check, as we smile at the Oncology Pharmacists. Owen gives cheek to his saviour, Dr Waters and if all goes well, he is back to school at lunchtime.. It is strange yet so normal for us, yet I remember the children that sat next to me in Day Oncology that are no longer with us. Lots of brave faces in there.
  Within all of life's strange twist and turns, Joel and Owen still have managed to get away on a few camps and a huge slumber party with the Challenge, the charity that has looked out for us in our early days. Owen recalled asked being by a friend on how he managed to get to do all these great things. Simple answer - All you need is to get cancer, he answered. He thought it was funny.. Black humour..
After months of pushing him, he finally relented and applied to the Make-a-Wish Foundation for something special. Make-a-Wish is a charity that grants wishes to children with life threatening medical conditions to enrich the human experience with hope, strength and joy (and now the tears start....getting soft in my old age). Three helpers came to our house to talk to Owen about his wishes and they will get back to him with an answer.. We keep our fingers crossed..

Polly and Waz....!!

Rod and Tania....!!

In the Man Cave

Anyway.... turns out one of the Make-a-Wish helpers is related to the funniest people on television. Polly (and Waz) from THE BLOCK. Yep, a show about renovating which Owen loves. By the next night, O, J and I were sitting in their house, on their couch watching the Block with Rod and Tania (legends) as well. 25,000 people lined up last weekend to look through the houses and we had front row seats.... Unbelievable...Then a tour of both houses including playing poker, with screws, with Waz locked in his Man-cave. It was a wonderful and uplifting experience. A bonus, but most of all. the joy of being in the company of genuine people. Click on the photos to see the fun. Thanks heaps to Polly and Waz, Rod and Tania and Special Thx to Hugh..

Still here and Owen is booming along....

Quick catch up.
Yes... I know that it has been a while.. Sorry.....

The Goalie....

Where did that hair come from?

We have been absolutely flat out.. Preparing our backyard, fences, water tanks, while landscaping has been happening. After living here for 12 years we endured our final Summer of closed doors and dust. Then a massive job at work that ran for 4 weeks. Now we are playing catchup. Landscapers have gone, but the gates, bbq area and more still need our attention.  
The boys are back to school and loving it. 3 boys in 3 different schools.
About a week ago Owen said that it was 1 year, 5 months and 1 day since diagnosis. It seems a lifetime away.
 But.... we get little reminders. The District Nurse every 2 weeks or so, taking blood samples for checking. The Dr appointments with lots of positive remarks. He is doing really, really well...

The original hairdo....!

A little surprise this week as the phone call came through from Oncology. His neutrophils  (protective white cells) are dropping to a level that means any temperature spikes (indicators of potential infections) and we are off to Emergency. They have stopped his oral medication until we have improvement. It is important that the medication knocks him about, because it is a sign that it is doing it's work. Owen is definitely flat and tired but we count our blessings.
He is back with a vengeance.. and he now has CURLY, WAVY HAIR......! And plenty of it.
Make-A-Wish foundation. (Click here to see their work)
Owen was asked at short notice to appear in a fund raising television advert for the great charity "Make a Wish". A Children's Charity that grants all sorts of wishes children who have battled, or are still battling life threatening diseases. It is currently running on Television. We have not seen it but lots have been complimenting Owen for a great job. Owen, as yet has not made any requests to Make-A-Wish, even though he has paperwork and is a worthy recipient. He does not believe that he is done yet..... But any opportunity to get his head on TV... No probs....  
Click here to see the Ad. It's a beauty

Ricky Ponting asks" Why are you standing on your tippy toes?"

Boxing Day.. Look at the smile

"I am trying to get my head on television..." said Owen, smiling from ear to ear admiring his face on the big MCG screen. A huge exciting event, standing with Australia's Cricket Captain at the Boxing Day test..
Lately, writing O-man's Blog has been easy.. Documenting the improving health of Owen. Celebrating life...

This post is proving to be much harder as it starts tapping into emotions which are usually controlled. I research into the Ponting Foundation and realise the impotance it has in our lives... Ricky and his wife Rianna are deeply involved with Children's cancers in many, many, ways, including RedKite, a support charity that handed us the beautifully made and distinct RedKite support bag, in the early days when we were struggling. This large bag is full of toiletries, pens. puzzle books and "Lachlan the Bear", Owen's 1st Hospital soft toy and constant companion. 

Owen was given a hand written invite to meet Ricky Ponting and stand with him during the National Anthem ceremony at the Boxing Day test. I struggled holding back emotions as I watched Owen on the field lapping up the ceremony. The experience is as much ours, as his. Then we sat in the best seats and watched our 1st genuine cricket game. We loved it... (We followed the rest of the test on TV and radio religiously.. Never, ever have done that before.. Now we are fans....)

Lee, Joel and Owen met Ricky 4 days earlier at the MCG. When the rest of the team went to the nets, Ricky came over and spent some time with the boys. I was always curious how a top order sportsman would connect with Owen, a casual observer of sport. Easy...!  He was genuine... despite cameras, media and television crews, he chatted, taught and then played an inpromtu game with O, Joel, Jess and Soph, and they had a ball. I was amazed at the enthusiasm and excitement in Owen as he and Joel told me about their day.

Ricky may be struggling at the moment, but we back strugglers anyway.... Always have...

Thank you to James, Jo and Ricky. This experience has had a huge positive impact on our family, especially Owen...

(There are 3 links on this page that can be clicked on to see more stuff)

Check out the boots

Just what he wanted for Christmas.....
Steel capped boots and Explorer socks (Could have done with some nicer PJ's....)
Also scored some Hard Yakka work shorts..

Merry Christmas to all

The Cheesy family Xmas photo with a non-compliant Luke..

We get there.... A normal crazy Christmas. It was very different this year. Last year we were controlled by appointments and the hospital and we got through. This year, it almost seemed harder as we did not have the structure there, keeping us in order and focussed... Strange....  This year is much better.... much, much better..

Pre - Xmas update. Owen is still bouncing along beautifully

Rockclimbing at the Challenge Family Day.
3000 people at a Carnival day with rides and activities
and all for free. Put on by the "Challenge"
Supporter of Children with Cancer. We had a ball.... 

We have been busy, busy, busy.... too busy. Foolishly decided to fill our lives with landscaping and major works around the house so almost forgot Christmas....

Owen has slowly been getting colour back into his skin and is getting stronger everyday. You really start forgetting everything that he has been through.

Last year he co-captained the Grade 3-4 dance group through out his chemo treatment and they danced publicly recently, and raised $126.70 for The Leukaemia Foundation. The boys were proud as punch....

We hear little snippets of his year at school, and the Physical Education was the one thing that we were not going to push this year. However, we have found out that his teachers would find him inspirational.... He would always participate.... despite his sickness. Pale and sickly, yet they would watch him join in without protest, and always try his hardest. The little things that we never knew about..

The hair is coming back.....

Sweet tooth is back

 Apologies for not updating. I have a big one coming showing a summary of the year. And we are trying to sort out our yard for Summer. We are either walking around in dust or mud at the moment.

Owen is doing really well. Just been in for a Lumbar Puncture and a top up of Chemo. Still taking his tablets, and we had a "sick" day yesterday. Throw up in the morning, and sat around all dressed up to work outside with me but had to sit on a chair and watch. A sad face all day. Bounced back today as you can see in the photo.

12/11/10 One year since diagnosis eve..... A celebration of community.....

Friday, a gathering happened. With Owen's One year milestone pending, Justine and Tracy, our resident Organiser/Angels decided that a party for those on our food roster was in order. That evening, wedged perfectly between massive downpours of rain we had an opportunity to say thank you to those who have supported Owen and our family. The meals, the fruit and vegetables, the gifts, the big things and the little things, emails, words of encouragement, the list never ends........ .
It turned out to be a happy and uplifting occasion. And Owen was in his element, moving, shifting, organising and helping. He gave a beautiful speech which he had spent 2 weeks on. As a 9 year old, he is comfortable in front of adults. The last year of his life, most of the time has been with doctors, nurses, and his mum and dad, a big part of his childhood has been bypassed. I can see the changes. His conversation is not childllike anymore. It is about the bigger things in life. This happens when you chat with haematologists, resident doctors, oncologists then psychologists and psychiatrists and the usual playful banter with nurses. Just a normal week for a 9 year old called Owen. (I actually love it when the child takes over and he sits a plays Lego...)
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We had said that having a child with a disabilty made us aware that the world was full of good people. People who help and support and devote their lives to making these children's lives better. We never understood why we had to go through the same learning cycle again with Owen. But, the support from everyone showed us that the world is a good place, and people care.

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So thank you to everyone.

This thank you extends to everyone....... Not just to those that were there on Friday. Everyone.....

We are now cooking and shopping for ouselves, and trying to do things as normally as possible.

I am now checking on Owen visually when I go to bed, and leave for work in the morning. No more checking his temps by touching his forehead. He is well.... except for his bad blood counts but they will improve.. with time.

Lee suggested that it was time to start going to school without a bandanna.... He is now happy to do it....!

10/11/10 Goodbye extension cords...

Hickman line. Just before removal.

This photo was taken just before Owen had his central medication line changed over from a "Hickman" to a "Port". The bandage on a Hickman line is nice and neat for 2 days then it starts lifting and loosening off. So we start taping and repairing until he sees a nurse who removes the bandage, and cleans up his skin before applying a new bandage. Then they flush his line. This takes about an hour..... And you have to be home, waiting for them...

Now, Owen has no cords hanging out of his body. Life with a port is a lot easier. Because it is under his skin, it only needs to be "accessed" once a month rather than weekly. He does not have to tie it back to his clothes and it will not get ripped or torn out accidently (Yes it happens). It will be under his skin for the next 2.5 years... as he needs medication in it once a month. You can see the bump where the "Port" is in the photo on the right. It is in a safe spot on his body, but it should not he knocked so rough play is off the books.. supposedly.. We are constantly reminding him and Joel....

8/11/10 Day 360. All is good.

The O-Man Bandanna. A special gift..

Closing in onto Owen's 1 year since diagnosis...

Had a checkup last week and all is moving along nicely. His health outwardly looks great as he slowly gets a little bit more colour back into him. His tablets are on hold for 2 weeks as they are knocking his blood counts around. His neutrophils are down to a point if he was in hospital, they would not let him out until they had recovered significantly as he was vulnerable to infection. I explained it to Owen in simple terms. His brothers bloods have 200 - 800 soldiers protecting them from infection. He has 10 soldiers..... Still, he is well and happy....

20/10/10 The best of the best.. Jason Hodges at Bunnings.. Wow

Apologies for taking so long to blog. As life settles down, we start filling it all those thing that we ingnored. Family stuff.... All those things that we skipped around now are important again....

Jason Hodges and The Big O

That magical evening..

.."Ohh.. Joel, this is amazing...." came out of Owen's mouth as he sat in the back seat of the car, travelling home, staring at his brand new Ryobi Cordless drill. "It's 18 volt as well. It's a proper tradesmen's drill".....

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The Saw Horses....!



We had just met the one and only Jason Hodges. The gun landscaper from the TV show Better Homes and Gardens. This is the one show that Owen watches religiously, and Jason is by far his favourite. Not Rob the dancing Builder as everyone would believe. Jason, the bloke on TV is exactly the same as the Jason we met. A good all round genuine nice guy. He looks Owen in the eye and talks to him directly and Owen just smiles from ear to ear. Jason then handed Owen some gifts, which Owen had been saving up for.... A cordless drill and work horses... As a bonus he was given a radio that uses the cordless batteries. He was and still is, stoked. The Drill sits next to his pillow when he goes to sleep. The workhorses go out to work then come back into his room at night. It was only as I started looking at the photos that I realised how happy Owen was. His smiles give it away.....



The drill...and look at the smile on Owen's face. Priceless..

Bunnings, Owen's favourite store had stunned us again. Sharlene organised an opportunity for Owen to meet Jason and then they organised gifts which absolutely floored him (and us). Thank you Sharlene, Sally (and all Bunnings staff that were involved) and Jason of course for being the gentleman that he is. Thank you for your efforts, and everyone's genuine care and concern, for Owen. He is kicking goals healthwise, and the drill has been used a lot already... Actually, it has been banned a few times because it is used inside the house, inappropriately. Typical 9 year old boy.....



Day 334. 23/10/10 The ceremonial 1st bath since diagnosis.....Not....!

Marinating in the heated Spa.
Looks warm but it was a freezing day.........

Owen has not been able to have a bath or swim since he he was diagnosed and had his central line fitted. With his new "Port" fitted and the wound healed up, he was ready for us to run a beautiful warm bath and he could soak in it for hours. Or so we thought..
"Dad, the Grant's want me to come down for a swim in their new pool"... "Owen, it's only 12 degrees, Ok. 15 minutes to half an hour"...
4.5 hours later, he was back and happy... Much to his mother's annoyance (She was out shopping all afternoon)
Life is normal... Sort of...

Day 330. 19/10/10 The Beaded Journey continues.

The Beaded Journey.


Sitting in a wheel chair, 5 hours after the Big Operation
 in Day Oncology waiting for some Chemo.
Having an ice cream as a reward.....

 For those that do not know, when a child is diagnosed with cancer at Royal Childrens, a psychologist becomes Owen's friend and counselor. She constantly catches up with Owen and just chats about everything. She also starts a string of beads. This becomes the child's beaded journey which they hang from their pump poles and carry around with them. Each bead represents a medical procedure or a significant event and the counselor hands them to Owen and he puts them on his string. They talk about what happened and it is a reminder of how much he has endured and how far he has come. An ongoing bravery award and something that touches people. It is only used on the Cancer Ward, as it is funded by a Charity called the Koala Foundation.
I had Owen count his beads and procedures for me.
In the last 11 months he has had the following:
81 Finger pricks
33 Units of blood or platelets (Unbelievable....)
72 Chemo medications put into his central line
21 Operations
41 Bloods taken from his central line or with needles for testing

Progress......
He is doing well. Last week was a full week at School...... I cannot remember the last time that happened.. His temps seem to be normalising. No winter pyjamas and doonas with quilts on top on warm nights. We have been told that that his neurophils are dropping with the oral medication, so to keep up hand hygiene and watch his temps. But... All is good....!

Day 322. 11/10/10 Line changeover operation update.

Dr Monkey, Collingwood scarf, bandanna. Ready to go.

 Tuesday last week we were in a Royal Childrens at 7am, and had to wait until 11.30 for Owen's Op. His op was not as simple as the others that went in before him. It is a test of patience and Owen proved that he is made of the right stuff. The Op went for 1 hour. It was a big one in a big theatre and it took 4 hours for Owen to wake up properly. The pain was terrible but we were home by 7pm that night. He has healed nicely since and went off to school today after 4 days off last week from the pain around his new Port. But Owen, as always, never complains about it. He is not happy with the pain, but soldiers on. He is the "Worker". There is a job to be done, so he just gets on with it. We do not need to go back for another month if his health remains good. And a long luxurious bath is awaiting him soon.....

Power port. The latest tchnology. This is under his skin. It has a plastic front which they push needles into. It hurts when needles go in, but he can swim with it.

5/10/10 Central line changeover.

Well, I thought things were going to slow down. Owen's health has been good though he does have ups and downs. He will be working like a demon for hours in the backyard, then I will find him under a blanket, in the middle of the afternoon, watching television. He will go missing when he is tired, playing Lego or on his beloved laptop.
He went in this morning to surgery to get his central line changed from a "Hickman line" to a "Port".
A Port is placed under the skin. It is a covered with a membrane that needles are pushed into and it has a tube on it that goes into his jugular vein then down into the top of his heart. All his chemo and bloods will go through the his new Port. The Hickman line is a much more heavy duty central line that was fitted because of his original very bad diagnosis. Now he is in maintenance, he does not need it anymore.
Once it heals Owen will be able to have a bath, swim in a pool again and join Nippers. This will be a great achievement. This will be a great, great day...........!

28/9/10 Day 318. Settling into maintenance..

Owen is bouncing along, generally healthy and busy. We skipped close to the line last Friday, when Owen came back from Camp, exhausted. We had to trust our instincts as parents and despite his high temps, we believed he was fighting off a cold, and we proved to be correct. No Emergency this time.....Set the alarm at 2 hour intervals and kept checking his temps all night. Bags packed and in the hallway, ready to go..

20  months ago - Thick hair with Cuz May and Bro

Hair is coming back, but it is very, very thin and patchy. Bandannas and caps everyday. Generally, he is well and his blood tests are tracking nicely. All Good.... so far....

Yes, Our front fence was painted Black and White, and the house decorated ready for the Grand Final.
Brothers 3 in traditional colours.

22/9/10 Owen waits to be selected

Owen has his final training session before selection for the Grand Final.....
No, not really. These are from the Challenge day when he was invited to run through the banner with Collingwood. The photo was taken by a real press photographer and the look of excitement on Owen's face is priceless. As you can see, Leon Davis was the first player out and he grabbed Owen and guided him out to the banner. How we got these photos was sheer coincidence and luck. Thanks Cousin Amelia's good friend who follows Owen's journey.
Click on the images to see his face......

Thank you - Light the night sponsorship

Message from The Team Captain..

I thank you for the generous donation, support and very kind comments, and hopefully they one day find a cure.It was a Terrific night....... Thanks again. Owen.

Follow up from Support Crew..

Thank you to all that donated. Thanks to all that thought of Owen and the emotional support from everyone that has been touched by his journey. We walked with many and saw 3500 illuminated balloons carried proudly. Owen carried a White Balloon for a survivor (Yes, he argued that he was not a survivor yet as his treatment had not finished.. Pedantic...!) and I carried a blue for hope and support. Our buddy, Stu and his family carried gold to remember his Dad. The crowd was full of beautiful blue balloons, and Owen observant as ever noticed that there were not many White balloons.....

We have met children that get direct supprt from the Leukaemia Foundation and any money that goes to research is good money.... Owen was absolutely blown away at the donations and he has raised $700..

Thank you, thank you, thank you....

I write this while watching the Jim Stynes Documentary.. A reminder that we must be good to each other.. and to ourselves

Light the Night 2010 - This Wednesday night 15/9/10

Owen is participating in the Light the Night Walk 2010 Tonight. It has been a busy time. Joel has his school plays but Owen really wanted to participate and we have decided to do it at the last minute, because it will be an important and uplifting experience, and he wanted to walk with Stu, and support "The Wayne Fowler Crew". This is Stu's Dad who died from Leukaemia recently. They are the biggest fundraiser so far, and are aiming for $20,000. We will get illuminated balloons and release them into the night sky together. The balloons are different colors. Below is Owen's link to his fundraising page. We are aiming for $100 this year. Again, Owen wants to tip in all his saved money and again I remind him that his time will come. For the moment, everyone is supporting him fight this disease. If you can, we are only after little donations of $5+. In 2 years when they do it again, then Owen will be nearing the end of treatment, getting stronger and he will put the pressure for more........ Thank you, thank you

Click here for Owen's fund raising page 
Leukaemia Foundation - Light the Night Walk 2010
Stu's Fundraising page

13/9/10 Maintenance..!! yee hah...

Well. Owen has crossed a huge bridge. After 10 months of "Intensive consolidation" (Heavy drugs..) he has moved into "Maintenance". In theory, the Cancer is in control, and now he will have 2.5 years of drug taking and monitoring making sure it does not come back. Leukaemia is a blood cancer and hides throughout the body so they cannot locate it and knock it out like other cancers. Instead he will take a mixture of drugs over a long time which should do the trick. We have kept this quiet because it happened 2 months earlier than expected, we are still getting used to the idea that we will not be in hospital 1-2 days a week (hopefully 1-2 a month) and they still have to adjust his medications to suit his body.
But........ this is such good news...!
He still has a terrible disease that puts a lot of stress on him and the family. We have to watch him closely and he may need blood top-ups. He has to take a lot of tablets and he spent the first day throwing up all day.... This should all settle down soon and as Dr Waters said. Owen will have a normal life...
A rough start, but, hopefully it is just a speed hump....

2/9/10 Day 300. Resting the body

Owen next cycle is on hold until his blood counts are ready. All is good though. Back to school, and his general health is good. We get blood tests done at home or at school by the Mobile District nurse, and yesterday's counts were too low. He is getting close, so they will be wanting back into theatre soon for another Lumbar pucture and Chemo into his spinal fluid. They will change the medication this time since his adverse reaction time. Everything seems relaxed...

31/8/10 Day 298. The Super Heroes.

The Super Heroes..........!

In the background, there are 2 boys who we are trying desperately to allow to lead as normal a life as possible. They are never forgotten, yet they miss out on a lot and have their own stresses to carry.

Just a short post reminding us of how lucky we are...

Luke - Biggest Brother..... Luke is kicking butt this year. 13 years old now and the size of an 8 year old. Still does not talk but is making a lot of noise. We are hopeful. He needs 24 hour supervision and assistance with just about everything but he is happy, happy, happy, from the moment he wakes (6.30 onwards, so forget the sleep in) to when he is put in bed at 8pm. His new tricks.....: He smiles and fetches the towel off the rail when Joel asks for it after a shower. Offers his cheek to Lee and Owen for a kiss when they ask. Waves Goodbye. Feeds himself cereal and any meal that can be eaten with a spoon. Loves any vegetables that are orange.. pumpkin, sweet potatoe and carrots. Pushes you out of his way, especially if you are between him and one of his music toys. And gives Owen grief by tipping over his Lego containers. Luke doesn't seemed too fussed with everything going on.... although he shadows us, especially if I have not been at home for days because Owen is in Hospital. We love our Lukey....

Joel - Middle Bro.... The quiet achiever. Hampton Primary School Captain. Scholarship to St Leonards starting High School next year. Music , Piano, Guitar, Ukulele and singing. Starting to teach me chord progressions. Performed the National anthem in front of 50 Footy playing Dads, their families and spectators at the St Mary's Vs Hampton Primary grudge match. Not phased at all. Cool as a cucumber. School assemblies, school performances, school play, debating team. Academically kicking goals. Too easy....... Joel has missed out on a lot of activities and we have not been able to attend his school camp as promised, many of his performances, presentations, watched the School Soccer team make their way into the Finals (We will be at the Finals), swim carnivals,  etc, etc, etc.... He seems fine with that. He wouldn't tell us if he was disappointed anyway. We are sure that once Owen moves into the Maintenance phase then hopefully, we can start being normal parents again and spend the time with him that he deserves. To say that we are proud of Joel is an understatement...

25/8/10 Day 291. Day Onc and a famous Bowditch.

As predicted, Owens's blood counts are low... but rising. A blood test at home the day before tells us that he needs 2 units of blood. I think these are numbers 5 & 6 for this round.

A famous visitor arrived.. and Owen was stoked. Yep the famous Aria award winning Clare Bowditch a specially signed latest critically acclaimed Album (Currently No. 10 on the Album charts). She discussed all the famous Australian musicians that she knew, was supporting Leonard Cohen on his Australian tour, and recently interviewed Julia Gillard. Busy, busy bee.....

We now wait for the new round and Dr Waters is talking positively. All is good..

Hair is coming back slowly.

Sitting on my Red Chair, getting two bags of red, chillin' with a famous red...head.. Cousin Clare

23/8/10 Day 289. Monday. Hair growth revelation

Don't compare our skin tones as my Doc told me I need more sunlight. Vitamin D levels of an old man... 

Did a lot of thinking this weekend about hair. Owen sees a Dr every week and has lots of medicine. I don't see a Dr very often and guess what we worked out.

Beer and donuts makes your hair grow.....!

Owen radiates with a beaming smile and pale skin.   Had a busy weekend, removing trees getting ready for some landscaping work. Owen desperately wanted to help but spent most of the time sitting or lying down.  We think he will be needing blood soon and this should pick up his energy levels.

  We might have grass in our backyard for the 1st time in 4+ years. Luke can go outside without carrying mud or dirt back into the house. Yee hah..!

Also went back to school today.... Fantastico...... Forgotten how many days he has had off...

Home injections.

Home Injections.

In the last round we had to give Owen injections at home.

A temporary plastic tube (cannula )was fitted into his stomach muscles and we would inject chemo into it. This would happen for 4 days then we would remove it. If you click onto the photo, you can see the bruising around the cannula caused because he has low platelets and bruises easily.

We have to keep this medication in the fridge, and use gloves and sterile wipes to stop infection.

No problems.....