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...