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.....

19/8/10 Day 284. Another day off school

Neutrophils are Zero. Nothing in the tank to protect him from any bugs... So we watch him like a hawk.
His Nan and Grandad are here to help out, as he is too unwell to go to school.
He is at the end of this awful cycle and Dr Waters believes that he will need to rest for 2 weeks before his bloods are good enough for another beating... He warned us again that he will get a fever. Bags are packed..
23 school days - 15.5 days off school. Juggling, juggling........
Then, there is the catching up. Thank you to all that supply us with meals. They are appreciated. They give us time and we need it desperately. Most of all, we need sleep.
We do the best we can but are exhausted.. and worried...
Owen keeps us on our toes, like he always has........!

15/8/10 Day 280. I have never been so scared.... never, ever..

Another tough week.
Monday - Curriculum day (No school)
Tuesday - Owen went back to school for one day
Wednesday - Day Oncology, 2 Chemos including the dreaded double injection into the thighs. Blood counts are down, so 2 bags of blood are ordered. Only enough time for one today. Home late.
Thursday - Grandad is down, looking after Luke who is too unwell to go to school. Lee leaves with Owen for Day Oncology for his next blood transfusion (4th bag in 8 days). I take over from Lee, then pass him onto Pappy to finish off and drop him home to Grandad,...(Did I mention logistic nightmare). Owen is fine.
2.30pm, Owen called Lee distraught, hands are hurting... He sounds tired and Lee insists that he rests.
Constantly checking up on him and when Lee gets home at 4.30, she could see that he has deteriorated..

Resusitation Room in Emergency - Scary place

He cannot talk clearly, and she could see the fear in his eyes. Ambulance is called.....

I am at Emergency when he arrives, and he is unloaded, smiling at me as if he is heavily sedated. He cannot walk, talk, cough, swallow saliva and communicates with hand signals taught to him by the Paramedics. I am stunned......... Owen has the most beautiful handwriting and this is deteriorating before our eyes until we cannot read it anymore. He cannot find letters on a laptop. We have been in Resusitation rooms before with Luke's epileptic fits and Mum's stroke and we are frightened. I pace out of Owen's sight wanting to tear the world apart. He has fought so hard and something is taking his dignity and his soul from us.. The fear.. Like watching a timebomb, with medics searching but confused. Cat scan clears bleeding on the brain (Likely as he has minimal platelets). Now the worry of a brain infection. Owen keeps going downhill. We are in luck as an oncologist is in and she comes down to check on him.
By process of elimination, he has the signs of a toxic reaction to chemo put into his spinal fluid..9 days earlier.. Rare, and unlikely to happen again. Reversible and he should recover withn 2-5 days.
She hops on Owen's bed, wraps her arm around him and explains this to him and Owen breaks down. He had been brave, fighting all his fears which are unfair for a child his age and she allowed him hope. The night was not over but we were all relieved.
7 am, next morning (13th of August - 9 month anniversary!), he smiles at me and says hello. His voice is back and we cuddle, elated.......
His recovery is like a miracle, but he is admitted anyway for observation and more testing.
Diagnosis is confirmed and he is released at 10am on Saturday morning. Like walking on a cloud.
Hopefully back to school tomorrow. Still have to watch him like a hawk.
These events heighten Owen's fears and worries....He is frightened of going to sleep... and wakes up, absolutely startled, calling for us, fearful of the disease that he carries.. Hopefully this will pass..

10/8/10 Day 275. So far so good.

Back to school and feeling fine still. Great Stuff.
An observation.......
On 2 occasions when going into Day Oncology, a fantastic and very experienced nurse has said that when these children come in to get blood transfusions, she looks at them in awe. Their red cell counts are similar to a child coming through Emergency after a major trauma such as a car accident. Where they have lost a lot of blood and are fighting for their lives. The cancer kids get used to their sickness and learn to compensate and live with it.
She told me this after she saw Owen walk in with his heavy backpack after theatre. She thought, "Wow, I cannot believe that he is walking in, carrying his backpack. His count is too low to be doing that" ......
Amazing....

7/8/10. Day 273. Sunday. Trying times

It has been a tough 3 weeks. And Owen has just been the soldier as always. In the last 3 weeks of school (15 schooldays) he has been away for 9.5 hays. Last week went as follows:
 Monday - School
Tuesday - Theatre (Lumbar Puncture), Day Oncology (Chemo and 2 bags of blood)
Wednesday - School. Noticed dried blood in his Hickman line bandage before he showered that night. Called the Hospital and they told us to come in the morning, unless his health deteriorates. Platelets must be dropping, and his blood is not clotting.
Thursday - Day Oncology (Blood test and a bag of platelets.)
Friday - Home, unwell.
Expected one day off school. Got 3 instead. A logistic nightmare.

However, he got through the weekend with headaches and stomach pain. Worked like a demon, trimming trees and cleaning up around the house and finished off doing his new 2nd favourite thing to Building - Cooking....!

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We are blessed.

We have befriended a family with a daughter 2 years younger than Owen, diagnosed at the same time, and she is fighting a lot harder......

A painful remainder that the stakes are high... 

Despite our struggles, O still tracks well, ticking the boxes. We have been waiting for his temps to rise, and they threaten to....., but they stay below 38.5. Each day we stay out of Emergency is a day worth celebrating.

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Is it George from Masterchef?

No.. Owen can grow his hair back......

3/8/10 Day 268. Royal Childrens. All day.

Lumbar puncture at 9am. Doesn't matter how many times I do it, watching any of my children getting anesthetsised cuts through any macho bravado. I am glad he is asleep before he sees my fears. 5 minutes later, I am composed and wait for him to recover. 

Dr Waters is happy. He bets that we will be going through Emergency within a week... Bummer...... How's that for positive thinking. Unfortunately, with 36 years experience, Dr Waters knows a lot.

Some chemos are instantaneous and others slow working. The slow working one is going to knock him about. He needs 540ml of blood today. It starts at 1pm and we are out at 7.30pm.... Bloody long day! You can see his colour come back. Grey to pink... And his lips go from dull pale pink to red.

Lets hope he is at school for a few days this week..

The treatment room where you get medicines and injections in privacy.

Every home needs one....
You can see his pole and pump with life saving bloods hooked up to him.

2/8/10 Day 267. Rattling tins at the Rugby League

Dr Waters is a little different to other Oncologists. He believes that we have to trust our instincts and try to live life as normally as possible. Dr Waters is known as a  risk taker, which we like .... He says that the priority for us is Owen's mental health. He sorts out the rest. If you want to obsess over numbers, times and progress, he is not for you.

So, despite missing 4 days off School, he got off to a mate's birthday party which he loved and shaked tins for Challenge at the Melbourne Storm game. He and Joel worked the crowd well. They had fun... Owen wants to do it next weekend...

"Challenge, supporting kids with Cancer" , "Accepting cash, credit cards, car and house keys"
You can say anything when you have a bandanna on, and a smile that lights up a bleak dreary winter day. People drop in money and wish him well.

Double trouble at the Storm.
Bunnings supplied beanie to cover the shiny scalp..

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......

28/6/10 Day 230. Monday

Back into Royal Childrens. New round of Chemo in Day Oncology, a lumbar puncture in theatre under general anesthesia and a shot of chemo into the spinal fluid. In at 8.30am, home by 6pm. 9.5 hours in total. Patience is what is needed because there is a lot of waiting without knowing why.
Booked in again on Friday for the Dreaded Double injections into the thigh muscles, then the 4 hour wait in case of an allergic reaction.
Owen's school report came out and he is doing very well. Luckily, we have a bright little boy on our hands so there are no major concerns, considering how many days he has had off. His report said 28 days off and then there were 3 days last week, plus 8 days last school holidays.
A total of 41 days off. Or 8 weeks.........
Try constantly shuffling life, taking time off, holidays, reorganising everything, all at short notice. No wonder why we are all tired...
You make up the time on the weekends, in the evenings, miss out on sleep, whatever you can do.
And luckily for us, we believe that Owen is healthy physically and mentally.
One nurse in theatre who has watched Owen come through over the last 7 months commented that Owen is the healthiest Leukaemic child that she has seen. That is wonderful for us.

Every now and then, a sad event happens. Then we have to tell Owen.

On Saturday, in between Owen's 2 Emergency adventures, I went to Trafalgar, 2 hrs east of Melbourne to a funeral. Lee stayed at home because of Owen's health. It was for the "Chocolate Pushers" Dad. This nickname belongs to my closest mate, Stu, who would frequently visit Owen in Hospital and offer him chocolate bars which O would use as a distraction during the early days when the finger pricks were too frequent and distressing. Owen was never given a full chocolate bar by us so this was a treat.



Stu's Dad was a wiry, fit, healthy 71 year old. As strong as they come and not slowing down. His life was full and there was still a lot to do. He was diagnosed with Leukaemia 6 weeks ago. He chose to take it on, by going through intense chemotherapy, and you would back his recovery with your house. This bloke is a born fighter. The Leukaemia took hold, destroying his ability to produce good cells and the chemo knocked him as well. In 4-5 weeks he was in ICU on life support as infections were ravaging his body and in 6 weeks, the machines were turned off with his loving family around him. I called it a car crash in slow motion. Devastating....

Owen met Stu's Dad by coincidence when he was released for 2 hours just before his chemo started. 2 fighters comparing Hickman lines. 71 years wise and 9 years young. When Owen inquired into why I was going to the country rather than stay at home, Lee gently broke the news to him. The moment she mentioned Stu's Dad, he burst into tears.. "No Mum......No, don't say it... No".
Reality check.... A heavy burden on a young mind, but we cannot hide such things.

Clown Doctor... No, just a clown...
Self portrait taken in Hospital with the Chocolate Pusher caught in the background, unmasked...

22/6/10 Day 226. Home - After 2 Emergency visits and 1 admittance.

Friday: 39.1 degrees at school, logistic nightmare but he was admitted into emergency at 3.30 pm. After 12 hours and 2 units of blood we are let out and crawl into bed at 4am. Cancer children are taken straight into a cubicle and away from the waiting area which is dangerous when your immunity is suppressed.
His temperature had dropped so we happily went home. We were told to watch him all day in case he deteriorates and come back tomorrow for a follow up and more antibiotics.
Saturday: I went to a funeral in the country and came home to boy who was OK for most of the day but going downhill rapidy. In Emergency, straight through to a cubicle, 39.6 degrees and he is moved immediately into the Resusitation Room. That freaked us out a bit..... Owen was very unwell by then and wandering in and out of sleep.
The Doctors were not happy at all with his condition and were shocked that he was sent home yesterday. They believed he was sent home because there weren't any beds available (This is a big problem at Royal Childrens which we already knew about), not because he was well enough to go home. His antibiotics were topped up and 350ml of fluid was pumped into him quickly and his temps stabilised. He was really unwell and you don't know this until you look back on it.
18.5 hours later, after much searching we were admitted onto the General Ward but in an Isolation Room. A day after that we are up onto the Oncology ward and at last we are relaxed.
Owens bloods quicky went down then slowly rose back up to a point that we could go home.
He is still too unwell to go to School so Pappy is looking after him at home.
Summary: 30.5 hrs in emergency sitting and sleeping on a small bench and office chairs. I am blessed that I have a strong back and am in good health. Owen was unwell so the time passed without any major distress. Something needs to be done about this...

Leaving at 3.30 am on Saturday morning. Dr Monkey. a constant companion in hospital. We were to find out that this was not a good move. He should have been admitted but there is a lack of beds available. Nothing new.... Unfortunately.

18/6/10 Day 222. Cruising along.- Then it changes, again!

So much for relaxing and saying that we are cruising......
Phonecall from school at 2pm. Owen is 39.1 degrees and unwell. Pack bags. Sort children and off to emergency. Left there at 3.30 am after he had 2 bags of blood and some antibiotics. A terrible night in an over stretched and underfunded Emergency with wailing children and no beds for me to sleep on. Owen perked up considerably and was feeling OK after showering at home and hopping into his bed, but went downhill. Saturday was a long, long day....

18/6/10 Day 222. Cruising along.

No major news.
Owen is cruising or resting for 2 weeks before the next round. Finished his 2 month round of chemo last week and will start again next Thursday. Owen's health has been great throughout. We are always expecting curveballs but none appeared. His weight is stabilising and his bloods are good. Everyone is happy....