11/4/13. Day 1246. The Final Hit of Chemo into his central line

A Big milestone was hit today..
A very important day as Owen got his final shot of Chemo into his port and his carry bag full of tablets was topped up for the last time. He takes his final tablets on the  Saturday 27/4/13 - Day 1262. 3 years, 5 months and 15 days since diagnosis. His immunity will take over from here.
It was an exciting day, which Owen was looking forward to.....


Thank you cards
 

He had been preparing for a week. Thank you cards were made and printed off and he worked into the night adding his personal notes. Small gifts were prepared and put into bags and a batch of  beautiful home made chocolate cup cakes was cooked up by a close family friend for handing out to the Day Oncology Nurses. They loved them.
A carer came in to look after Luke, as we all jumped into the car, full of happiness. We have made this trip through 4 summers and were heading into our 4th winter. Sometimes in the middle of the night, with bags already packed in readiness for long stays, once in a ambulance and plenty of times for appointments. Today's trip felt really different.


Dr Monkey travels in Owen's
Redkite Hospital bag
 

As we were waiting for a coffee, by chance, Owen bumped into his Cancer Ward teacher from 3 years ago. She would drop in on him and check that he was coping at School, giving him extra school work if he needed it. She gave Owen a big hug then walked towards us to congratulate everyone on this great day, and we just burst into tears........ The emotions were always just bubbling under the surface.
After composing ourselves we walked up into the Children's Cancer Centre, which was full to the brim with families waiting for appointments, as we had done so many times before. Sadly they were all still travelling that long and bumpy road. On the Cancer Ward the patients have their own Pharmacy and with big smiles Owen informed the pharmacy girls that it was his final day and lots of beaming smiles came back.


Our Hero - Dr Keith Waters
 

We then chatted to any staff member that we knew and waited for the person that has been most important to us. Dr Waters. He happily checked Owen over and told us that his bloods were tracking nicely. He signed off all the paperwork and booked him in for his final operation. Removing his Port. Dr Waters was different today.. Not as gruff... a personality trait that would have to help a man who has devoted his life to saving the lives of children. We spoke about his mantra of treating leukaemia as a long term disease and to make life as normal as possible. The child and their family needs to get through to the other side as safely as possible, both physically and mentally. He told us little anecdotes about families who turned their lives upside down to never recover financially and emotionally. When he first started he would advise parents that they should be grateful if their child was still around in 12 to 18 months... And then he spoke about how it was only because parents in the past allowed their children to be part of clinical trials that they are saving children's lives nowadays. He reminded us that we had agreed to allow Owen to be a part of these trials so children in the future would benefit from better and safer treatment. He was genuinely appreciative and allowed a quick hug and handshake. We felt we had been given an insight into a man who has seen too much.


Time for Gifts..

Finally, Owen walked into Day Oncology, into a treatment room and recieved his final shot of Vinchristine, a drug so evil that we had to sign a waiver exempting the Drug company from litigation which his nurse administers wearing an apron, gloves and safety glasses. 20ml in and he is done...
A catch up with a counsellor to complete his beads and we are out of there.
A quick inpromptu celebration was had that night and he gave a most beautiful short thank you speech while wiping his tears. We forget how much he has been through and the impact that it has had on him emotionally.. Owen like any child is very resilient but sometimes you can see the baggage that he carries...
What a huge but great day...!

Well... School Captain... How good is that

School Captain.......!!!!

Wow, we were happy that he applied but I did not expect that he would pull it off. After all, his older brother had the title 3 years earlier so my expectations were low. Not Owen, and I guess that with the experience of the last 3+ years under the belt, nothing was going to stop him.....

School Captains 2013 and 2010...

School has always been an important part of his life and we kept it going throughout his treatment. He would drag himself out of bed, wanting to throw up and feeling very unwell, take some powerful anti nausea tablets and off to school if possible. We would drop him off to school after he had been in theatre in the morning under a general anaesthetic. He was really, really sick, and vulnerable to infection but it was a risk we had chosen to take as it was important that he live as normal a life as possible. School was the structure, and the glue that he needed in his life and Hampton Primary looked after him. When I reflect on it, the School always looked out for him, and he felt very safe there. How lucky are we to be a part of this community. There are many, many children that have not had the same.

Owen's Return to School 2010.
Joel became School Captain that year
 

His first day back to school was the beginning of a new year. As you can see he was full of steroids, and had lost his hair. But it was important for all of us that life was to be as "normal" as possible. 
Cancer affects people in many different ways. For Owen it has changed everything. He is now driven to lead and make a difference. He wants to fund raise, mentor and inspire. He has met a lot of people that have looked after him, from teachers, friends, medical professionals through to companies that looked out for him, sporting heroes, television personalities, philanthropists and charities and the inspirational people behind them. People looked out for him.

I think School Captain is a part of the bigger picture.

An Update... Feb 2013. 3 years and 3 months

An update...
Well a few things have happened since the last post.

Our group with lanterns in all colours

Walking along the Yarra

Light the night. Wow what a night. We were encouraged to join up by our beautiful family friend, Lisa. His Great Auntie, family members, close friends, and others touched by or survivors of Leukaemia, Lymphoma and Breast Cancer. And that was just in our little group of about 30. Owen set up a team and with every one's kind donations, just on $3000 dollars was raised for The Leukaemia Foundation. He had the 11th highest fund raising team..... Not bad as we had set our goal at $1000 and thought that was too high.. It was a simple yet inspirational gathering where we walked along the Yarra on a beautiful evening in Melbourne, carrying lanterns colored blue for "survivors", gold in remembrance to those we have lost and blue in hope that one day there will be a cure. Owen was amazed at the generosity of everyone. 


And the fundraising trail kept going....


Owen and his mum went to a luncheon for Make-A-Wish. There was an audience of about 12 high wealth philanthropists and they both told their stories and what the amazing charity Make-A-Wish was and what they meant to our family. They then stayed for lunch with Owen chatting away. Impressive for an 11 year old. Even more impressive for his mum.

Sophie and Dale... From The Block.. on our table.....!

Lets not forget the Ponting Foundation Ball. A wonderful corporate event where money is raised for children's cancer support and research. Owen could not attend and talk because he was on a school camp. So his mum stepped in and spoke in front of 400 people telling our families story. Before he went on camp, he caught up with Ricky and played another game of Cricket on the MCG.
And he bowled him out...... Truly... Click here for the YouTube clip


Oh, and the Pink Lady Art Show. 2 full days of volunteering and contributing. Always helpful. He loves helping out his great friend, Lisa.

Sculpting for the
Pink Lady Art Show

Yes, life has been moving along with lots of important events popping up.
All is good.

And still on large doses of chemo tablets, and chemo shots, until late April... Then the treatment stops..

And we wait for another two and a half years for the all clear...

The Trip of a Lifetime...

Goofy and family

We are back from our much anticipated holiday to Los Angeles and what an incredible trip it was....
Owen said "I have worked out 6 words  to describe our Make-A-Wish Holiday......Amazing, Extraordinary, Unbelievable, Exciting, Fantastic and Overwhelming..." 
This trip went beyond everything that we could have imagined. For the boys, everything was a new and exciting experience. Even the 15 hour flight.. A chance to watch 3 movies in a row....whoohooo...
 We said goodbye to Luke at the airport and were terribly upset. Luke was fine, with great care from his Grandparents and Aunty, and school everyday so there was minimal disruption. He was happy...

The Limo..

  Day 1: Arrival into a new country. American accents, tough immigration and customs, then off we went. First surprise, a big black stretch limousine to our Disneyland Hotel where we stayed for 3 nights. At the Hotel we were presented with a package to cover our 2 days with them. Tickets, maps, an invite to the Make-A-Wish lounge in Disneyland (A beautiful room for MAW families to rest in) and the amazing Green Light Pass. This was a VIP pass that allowed us the quickest way onto or into any ride or show. Any Disney member would see it and would point, guide, lead us to where we wanted. This card cannot be bought, and changed everything........! We had planned out 2 days at Disneyland and California Adventure Park. The card meant that we could throw out our plan and just enjoy everything.
We finished the day off exploring the local shopping, found a MASSIVE LEGO store (Owen was in heaven) then we crashed after minimal sleep on the flight.

Breakfast.
Peanut Butter/Mac and cheese Pizza

More healthy food.

  Day 2: Goofy's kitchen for Breakfast. Peanut butter and Jelly Pizza (Joel loved) and everything else you could eat, then into Disneyland. HUGE day... Rides, Shows, Fireworks, Food and out at 11.30pm...
  Day 3: California Adventure Park.... Rides, Shows, Parade, Light show and out at 9.30pm in time for Owen to buy some boxes of Lego with money that M.A.W. Bayside had put aside for him..


Lego....!!!

To be fair, the Disneyland leg of our trip cannot ever be summarized into a few lines... The 6 words that Owen used can only be used as a guide. It was perfect.....
  Day 4: Limo ride into the Sheraton next to Universal Studios and a day of exploring and rest.

Scariest ride ever.

  Day 5: Star homes and Hollywood tour and shopping...
  Day 6: Universal Studios with Front of line passes. Another fun filled day with Owen sucking in information about filming and special effects. Rides, Shows and Fun...
  Day 7: Hired a car and tackled LA traffic. Down to Santa Monica and Venice Beach to see the sites and shop.
  Day 8: Down to Santa Monica again for dedicated shopping then back to the Sheraton. A huge black SUV to LAX and onto a plane for the 15 hour flight home.
Arrive Sydney 6am, Melbourne flight and home sweet home.

Transformers

It was a masterstroke waiting until Owen was strong and healthy as this was a jam packed adventure, full of great experiences and memories that will always be with us.

Shrek

We can never ever thank Make-A-Wish Bayside and all other MAW groups enough for what Owen experienced.
"Amazing, Extraordinary, Unbelievable, Exciting, Fantastic and Overwhelming......"

Thank you from the bottoms of our heart to Make-A-Wish. It was Fantastic and the memories will be precious. It was  pure magic.

Make-A-Wish Ball.. What a night...

Dress up time

OMG....Polly and Waz.....!

Exactly 2 years and 5 months... on the exact same day, "Friday the 13th", at 10.03pm, we told Owen that he had Leukaemia. (He remembers looking at the clock and wondering why we had been crying as we explained why we were in Emergency at Royal Children's hospital). The Doctor who told us said that we could wait and let him know later when we were ready. We said that Owen would read our body language in a instant and know something was up. We had to be truthful..

Adam, Owen, Grant and Joel..

Tonight it was very very different. We were invited to the 20th Anniversary Charity Dinner of Bayside Volunteer Branch of Make-A-Wish. Owen was to be presented with his wish and we thought that this would be pretty cool as we could publicly say thank you. It was such a fantastic night... In Owen's words "The best night of his life". Pretty cool as he has already had a few "best of's" in his 11 years. The theme was 1920's so we managed to organise clothing and dressed up. The boys loved it. "Hey Joel, I feel like a man" said Owen as they admired themselves in the mirror.

Our Fun tablemates...Alisha and Frank

We sat down and the night started. Introductions were made and everyone in the room was told that the 2 spare seats on our table were for some special people that we had met previously. It was Polly and Waz, winners of The Block last year.They had flown down from Sydney and Queensland to attend the Logies (which "The Block" won) and came to sit on our table and catch up. A complete surprise....I watched Owen trembling in his seat as they were announced and I told him to go and give them a hug. He sprinted out of his chair and across the dance floor and embraced them them both in absolute joy... Funny about that term "Priceless"... This was one of those moments.. It was a night of fun, and lots of laughs and smiles.
Owen was presented with his wish and he hopped up on the stage and gave a beautiful thank you speech giving everyone an insight to his life and his delightful positive energy. Then Lee followed with her thank you. She did beautifully and touched many souls that night. Heartfelt and inspiring. A mothers story... that produced many tears. Both had plenty of hugs from lots of people afterwards.

Finally an Huge Thank you again to the Make-A-Wish Foundation.. The love and support in the room was genuine and inspiring, and it was wonderful to be thanked for coming along and telling our story. We cannot believe the generosity of Make-A-Wish and that we are going overseas with our children on a big adventure...
We cannot express what this trip will mean to our family.
Owen is madly planning...

April 2012 - Tracking nicely. Exciting things coming....

April 2012 - Tracking nicely.

Well he is 2 years and 5 months since diagnosis and Owen is on track as Dr Waters had hoped.
Haven't blogged for a while as life has been business as usual. Thought I should update as some exciting things are happening soon.
Threw in a few photos as well. And some little anecdotes.

Our Family..Not stickers, LEGO.. Mum is not too happy about the champagne glass.....!

Owen's health has been GREAT.. Despite the tablets everyday, which he swallows without complaint, he is just fine. Dr Waters looks down his glasses at us when we talk him up and reminds us gently that he looks healthy but no child taking chemo is healthy on the inside. His immunity is compromised and bloods are still fighting their battle. There are constant reminders around us.

Looking after his Big Brother

The Warts...... He hates them and his body cannot fight them off, so it is off to a Professor in Dermatology to burn them off using acids, and liquid nitrogen. They are surprised at his pain threshold. The warts keep coming back. Hopefully when his chemo stops in a year, his immunity will take over and wipe them out. They have managed to control the warts on his face and feet for the time being,

Chicken Pox..... Chemo has wiped his blood clean of all the vaccines that he has had since birth. So any infectious disease is dangerous. A recent exposure to a child in class and off to Emergency where he is given a large injection full of antibodies to try to protect him temporarily. Isolation for 4 weeks from any activities with other Cancer buddies and Charities, and isolation rooms in Hospital when getting treatment. He dislikes isolation as he cannot catch up with nurses and Staff at the Hospital for his usual playful banter.

Tablets.. Plenty..... Some days just 2, other days 11 of them.. He has

Thursday Night tablets

Met from Maxy from Bondi Rescue.... Another show that he loved when he spent hours in bed. The Bondi Rescue Box Set (And Grand Designs) and he is happy. Drove to Sydney in the September Holidays and went to Bondi. There he was working... How lucky was that....! Turns out that he is an Ambassador for Canteen as well.

Monthly checkups and Chemo Injections int his Port.... 20ml of Vinchristine. A nasty medication that Owen gets once a month. We watch his skin for any breaking down of blood veins (crows feet), unusual rashes etc., and monitor his health. Last week was unusual with stomach pain and sweats at night, had trouble playing his first game of Soccer for the year and mild sunburn after an hour on the pitch on a beautiful autumn day. We sign documents allowing it to be used on Owen warning us of all the potential dangers and side effects. As you can see, the nurse wears gloves and an apron when handling it. 

Family Snap.....

August. 2011. And finally he met Scott Cam.

Owen and Scott Cam

Well, our Make-A-Wish connection and all round good bloke, Hugh, made some phone calls and surprised Owen with an opportunity to meet Scott Cam. The famous builder who Owen has been a fan of since "Backyard Blitz". It was possibly going to be a handshake, a photo and a pat on the head and then he would be gone. So, we went expecting just that. We turned up at "The Block" at 8am because we knew that he was going to be doing a live cross to a morning news program. 

Just hangin' around in the sun

Waz's lady glasses

Waz setting up sound for Owen.

As we walked up to the house, Scott Cam walked around the corner with Polly and Waz, and Rod and Tania...... How cool was that...! There were no crowds, despite all the hype about the show, and we stood with them while they prepared for the cross, and just chatted. Owen gave Scott a funny picture that we took showing Owen nail gunning a picture to our fridge and then showed him his beads. He was stunned as were the others by this snapshot of Owen's journey. It was a calm, relaxed and wonderful atmosphere and we walked away after 45 minutes in the greatest of spirits. Another round of thank yous to Hugh, Sarah (Channel 9), P & W, R & T, and of course Scott, who was generous in his praise, time and genuine interest. The journey is now complete for Owen. Jason Hodges and Scott Cam.... There is no-one left that he wants to meet.. Un-believable.. He has met so many great and genuine people in the past year, all organised by wonderful friends, charities and supporters that have wanted to make a difference in his life. And Owen has cherished and appreciated every one of these opportunities.
To finish off... Jason Hodges emailed him this week to ask him how he was going after meeting him a year ago... And Polly and Waz won "The Block"... And Make-A-Wish called him to tell him that his wish has been granted.. What a most amazing few weeks he/we have had..

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.