30/7/10 Day 262. Hair today, gone tomorrow.

Egghead........!
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About a week ago, Owen started dropping hair onto his pillow. We were all shocked and he was really, really disappointed. "I don't want to lose my hair Dad". He loved having hair...... As the week went on he slowly got used to it and it became terribly patchy, so it had to be cut. I cleaned it up before this photo was taken.

To be honest, we never thought it would happen again... Dr Waters warned us that this round is a rough one. The drugs will drop his neutrophils, exposing him to infections, so expect an emergency visit..

He is off the steroids and you can see the weight gain clearly now. Despite the cheeky smile, his temperatures are getting high and 3 hours earlier, his temp was 38.5 and we were ready to get off to Emergency. He looked awful and felt awful. But it dropped and we managed to stay out for another day. Bags and supplies are packed. We have had showers and are ready to go.

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3 styles of hair in our household.

Curly, straight and buffed.

The troublesome 3.

Today is Owen's 7 and 1/2th day off school in 2 weeks. Last week - 3 and a half days with back pain. This week - 1 day for theatre, 1 day for Day Oncology, and 2 days sick. He is super desperate to get back to school. He wanted to go this morning but stomach pains prevented it.

Challenge - What a charity, What an exciting weekend...

Challenge.
What an amazing charity.... What wonderful people.....




Owen, caught in a Pie sandwich....!

Most of us would have heard of Challenge in some way. They support Children with Cancer and their families with all sorts of things. Challenge has helped our journey by giving Owen and us wonderful and exciting activities and memories. I have mentioned some of the activities in this blog. I cannot even tell you what difference they have made to our lives.

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Mika. On the Oncology ward, we are harassed by the mighty "Mika" who brings us good things, large and small. Ice creams, organises in-hospital pampering for tired mums, gourmet dinners once a month for parents on the ward, and gifts from supporters. Then he gets children into activities, camps and special outings (constantly convincing Mums that their children will be fine). And the rest of the family are not forgotten. On top of that, he is in constant playful disagreement with Owen on everything. He brings smiles into our life.
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"The Great Aussie Pie Night"
Collingwood are a sponsor of Challenge, especially The Great Aussie Pie Night....Owen was asked along to to the Collingwood Training Centre to have photos taken to promote this fundraising event. He had photos taken with 3 marvellous blokes. All greats from the 3 Football codes. You can tell by the smiles that he loved it. This was to promote The Great Aussie Pie Night and was kicked off at the Collingwood St Kilda game on Saturday, where Owen was given the honour of team Mascot.

Storm's Cooper Cronk, Collingwood's Alan Didak and Heart's Matt Thompson at the Herald Sun Photo shoot...(Owen changed some lightbulbs while he was up there)

Owen's favourite shot. On the MCG before the game, with a light tower growing out of his head......

Who is the little guy with No. 5 on his back running up to the banner. Isn't it the Captain, Nick Maxwell?... What has happened to him?... He's shrunk!!!

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Owen is in there somewhere.......!
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Running through the Banner as the Collingwood team mascot.
We were invited by Collingwood to the rooms before and after the game. Owen got changed and we walked up the players race and sucked in all the excitement in the air. Owen then waited as the only mascot for the day. We were concerned about Owen and who was going to look after him as the players came through. Brian, the Collingwood organiser told us that everything would be fine and the players would sort it out. The noise from the 80,000+ crowd increased, as the Magpies came up the race. Owen's hand was grabbed by the leading Magpie (Leon Davis) and he was off, running excitedly out to the banner. Lots of players asked Owen if he was enjoying himself. He stood in their huddle as Dale Thomas shouted instructions then Ben Johnson stood behind him with his hands on his shoulders, and they all burst through the banner together. We just loved watching Owen run faster than he had ever before, keeping up with the Magpies and before we knew it, he was walking back to us with the biggest smile and a souvenir piece of banner in his hands. He was a very happy boy. A precious memory.
The game was a great one and then they went down to the rooms afterwards. Owen caught up with Alan Didak and Ben Johnson who both genuinely chatted to him and Joel.
What a thrilling experience for the boys (Yep... and Lee as well....!)

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Shooting the breeze with Alan Didak after the game..

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Thank you Collingwood.

Thank you Challenge.............

22/7/10 Day 254. 2 weeks off chemo...Yay.. But the steroids knocked him down instead..

The household was calm and happy after a super exciting weekend and we were pleased and excited about 2 weeks off chemo. But the short burst of steroids which he had been taking crept up and stuck it's boots in.. Bigtime...

Back pain..... Unbelievable back pain........

Home early on Monday, and the pains came on. A terrible nights sleep. Awake most of the night rolling around trying to get comfortable. Tuesday was OK, a call to Royal Childrens for an opinion, but that night it came on again and far, far worse. Like an stooped over old man with a smashed up back... And no painkillers because they can mask infections and any temperatures....

During the night he barely slept and was in fear of losing feeling in his legs, and despite the pain, he would insist that I help him out of bed and walk him up the hallway and back. This happened at 12.30am and every hour after that. I have not ever ever seen such toughness...... He could have stayed in bed and hoped for the best. But this is Owen... Tough little Bugger....

He saw Dr Waters and he said that Steroids are great for Leukeamia but have the worst side effects. Mood swings, depression, pain, weight gain. (Yep, O has had the lot) This the tough end of the game....

As a parent, this cuts into your heart. And the worry that things are turning pear shaped when you find out his side effects aren't common.. I guess it will all make sense eventually.....

But slowly, he is improving... We all hope that he will be back to school tomorrow (Friday).

I wanted to tell you about all the wonderful football (All codes, especially Collingwood) and Challenge stuff but we were kinda distracted over the last few days, as the household was knocked down as well this week .... Back soon, with something uplifting and positive.......

15/7/10 Day 247. Those damn steroids.

Owens health has been quite good. But the steroids are back though in smaller amounts over 2 months this time. He is not a ravenous beast as he was 6 months ago, but is always hungry, and his weight is increasing quickly with his face and body puffing back up again. And the moods.... We were warned, by Dr Waters and other parents... Negative and mostly argumentative, and without reason. So we have to remember this and calm him rather than fight with him.

However, his bloods are tracking nicely so we are relaxed for the moment.

This has been a week of highlights. From Bunnings (Still wearing their shirt, even to Day Oncology), Wednesday night - Everton Vs Melbourne Heart (Walked out on the pitch holding the Everton's Captain's hand, high fiving Tim Cahill on the way out), and some promotional stuff for Challenge (Children's charity).

Get the Herald Sun on Friday as there is a photo..

Big week........ Looking forward to the weekend. (Yep, there is the Collingwood game where he has been invited to run through the banner, promoting Challenge and their upcoming Charity event).

Owen slept heavily, lying across me, as we travelled home after the Everton/Heart match. He was exhausted, and as I held him, I could see how pale he was to his normal olive skin tone, and especially compared his brother. Owen would never sleep on a train when he is active, but this disease and the treatment knocks him around. Still, he is ticking the boxes.....

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8/7/10 Day 240. Bunnings Mentone. "It's like a dream or something"

"Dad, you must get home early today. There is too much to tell you on the phone".

Owen, like every child is unique, but his passion is building and construction and his heroes are not sporting stars. They are Scott Cam (Domestic/Backyard Blitz), and Jason Hodges (Better Homes and Gardens). He loves being outside turning our yard upside down, building something or being in with the builders next door discussing the finer points of construction.

His Great-Uncle Bruce kindly requested a tour of Owen's favourite store, "Bunnings". He received a positive response from Sharlene, and finally, after a few attempts had to be cancelled due to Owen being unwell, a secret surprise visit happened on Thursday.
This much anticipated visit, turned out to be an absolutely overwhelming day. Owen thought he was going to Bunnings for a quick look around with Uncle Bruce. Instead he was taken into the Staff room where a morning tea was organised for him. He was presented with a signed Bunnings Shirt, an apron, then staff members came up and pinned badges to his apron explaining what they all meant. He found out that they knew all about him through his blog which is printed off and put up onto the staff notice board. He was also given the honour of presenting "Making customer happy" badges to 2 staff members.

Then he was taken on the the Grand Tour. He loved every bit of it.

Ask me about.... Special Orders, The Gas Bottle Exchange, Perfect plant promise, DIY workshops and Installaion. How about the 5 keys or making customers happy. O loved his apron and Workshirt.

"Dad, it is like a dream or something, one day I am getting injections into my legs and am very sick, then next I am in Bunnings "

A Huge Thank You to all at Bunnings. The positive and caring culture that exists within this company shined through. We have been touched deeply and emotionally overwhelmed by this generous gesture which has been a massive highlight in Owen's journey. It had been a very, very tough week mentally for Owen, and this was the uplifting experience that was really needed. Aside from what happened today, the Bunnings community had only recently spent a day at Owen's older brother, Luke's school, Bayside Special Development School, sorting out the gardens and outside areas.

Owen excitedly showed me the outfit and gifts that he received. He listed his gifts and explained the final gift that Bunnings gave him without them realising.

"A happy kid......"

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3/7/10 Day 235. Unwell, but battling on.

Double Shot Friday - Owen has his monthly injections into his thighs.
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Saturday. From 6am, I am awake helping him as he throws up. This keeps going for the morning. You can never predict how unwell he is going to be. We write off the day.
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Sunday, a family outing to Scienceworks, but you can see the pain in his face as he soldiers on. Nausea and back pain which is quite new. However, he is a trooper.... As a parent, it cuts deep into you as you watch your childs suffering, but we wait for the good days and they do exist..
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Gifts that make life a lot easier for Owen:
A laptop........... He spends a lot of time on it when he is unwell at home, unwell in hospital or waiting. And he spends a lot of time waiting......... It started out as his connection back to school through skype. Now it is used to watch DVDs, check emails, games and Owen is the master-researcher of information. It is now one of the 2 items that he has on him whenever he goes to hospital. Even when rushing to Emergency. The other is Dr Monkey.
Thank you again...... to Moorrabin Office National and the Wilcock family for donating the Laptop to Owen. It was a shock when he first got it and has been an essential item in Owen's journey. Also the supreme Traci Cenedese who started all of this off.
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The suprise package in the mail.......(From Captain Feathersword/Fairy Good Family and Fairy God Mother)
Owen is holding 2 External hard drives. One arrived with the laptop the other in the mail. Owen was blown away with both. They contain hours and hours of stuff and they are used constantly keeping him occupied. To the anonymous giver who have not given us their name/names, Thank you..... Thank you.... Thank you......