28/12/09 Day 46. Monday. Day Oncology and the injections.

Owen was booked into Day Oncology for one of his medications today which had to be given by the Nurses. He also had to remain in the Hospital for 4 hours in case of an allergic reaction. I was told that it was a procedure that came as a shock to Lee and Owen. He had 2 injections at the same time. Owen had icepacks applied to his thighs and when he was ready, 2 nurses injected the medication into the muscle, slowly....... He stalled for as long as he could, but the nurses were too experienced. They told him to calm down or his muscles would tense up. He was asked to wiggle his toes to loosen up his muscles then before he knew it, the needles went in with the 2 nurses telling him to stay calm and not move as it would hurt. He let everyone know his unhappiness by screaming the room down and then it was over.
I guess it is my turn in 28 days to accompany our little fighter...

27/12/09 Day 45. Sunday

Extended family has gone home and we wake up as our little family unit. It's a nice feeling..

As you can see, Owen has lost all his usual cheekiness and naughtiness as the medication does it's work. Seems like a long time since I saw him looking like this. It is only mid morning on a beautiful summers morning and he is tired and cold as he cuddles up with his new bear. Luckily, his tiredness goes away, but his behaviour becomes erratic and has a slump in the late afternoon where he cries uncontrollably for 2 hours. He is aware that his moods have changed and he is not in control and is upset that he cannot cheer himself up. The doctor had told us of the many side effects of his new round of drugs. Behavioural change and weight gain are obvious ones that we have to look forward to.

Back to Royal Childrens tomorrow for another load of medication.

26/12/09 Day 44. Boxing Day

And as everything seems too easy, the changes start. Owen loses his appetite making his newest challenge of taking awful tasting tablets all the more difficult. After an hour and a half and a phonecall to Royal Childrens, the mornings round is complete. As with every other challenge that is thrown up to Owen. He will master it...

25/12/09 Day 43. Merry Christmas

Merry Christmas to all. Was great to wake up at home with family together.



The eating machine.
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The Trio of Trouble waiting for everyone to wake up


The surprise:
As the support staff (Owen's grand parents) were leaving at 11.30pm, they stumbled upon 4 beautifully packaged boxes sprinkled in magic stars containing many gifts on our front verandah. Another sign that the generousity of Santa is truly amazing. I knew that we had been especially good this year, and there, sitting on our verandah was the proof. We were shocked, overwhelmed, bewildered and scratched our heads trying to work out who were the elf's advisors. The boxes sat unopened until the afternoon, when we finally accepted that they were not delivered to the wrong address. There were all types of gifts, all given and accepted with love. Owen took ownership of a toy monkey with a surgeons outfit, and bottle of Champagne was put aside for the celebratory drink in 3 years time when Owen has gone into remission. We are very lucky to be suppported by a caring community. When Owen questioned his mortality as he is starting to do most nights, I used the gifts as an example that people cared for him and find him inspiring. He understood.............Thank you to all involved....

24/12/09 Day 42. Xmas Eve

Off to Royal Childrens for his Lumbar puncture and Bone marrow aspirant, then up to day oncology. That went beautifully and within 1/2 an hour of surgery he is on his feet and walking. Thought it would be a busy but a reasonably quick day. Wrong..... One medication requires a 4 hour wait afterwards in case of an allergic reaction. Still, we will be home for Xmas. Think positive, think positive, think positive.......... Then, false alarm... one medication and home. Three cheers for Mum, who hassles everyone until she gets an answer.

Heading in for theatre. The effervescent rascal is anxious, hungry from fasting and not happy..
.

The beaded journey keeps growing. The Xmas bead was added today (Green Xmas tree)

22/12/09 Day 40. Tuesday Appointment and the Magpies.

Found some blokes who were lost.
To quote Joel, "the best day ever, in my whole life"

The Collingwood football club visited the Hospital. Owen and Joel were buzzing with excitement as they rushed from floor to floor getting their autographs. The lads were just great, happily chatting to the boys and having their photos taken. Joel met his favourite, Harry O'Brien. Owen bailed up his favourite, Nick Maxwell, in the stairwell. He did not mention that his 2 new pet dogs that sleep with him in Hospital are called "Nick" and "Max" after his hero. The boys were just blown away. This will imprint for a long time as a wonderful memory.

.

Well, an interesting change for the minute with Owen's treatment. The samples that were sent to Royal Melbourne have given us some results about his specific type of leukaemia, though nothing is absolute. With this new information, his next round of treatment will most likely be as an Outpatient rather than in hospital. Which is Great News......

Christmas at home........Yaaay!

He is booked into surgery on Thursday (Xmas eve) for a bone marrow sample and lumbar puncture (Confirm that there aren't any cancer cells in his brain fluid). After he recovers he will be administered with his medication for his next round of chemotherapy, and a dressing change will be thrown in. Then home.... So, it will be a massive, massive day, especially as the Hospital will be packed with others getting everything done before Xmas. However, he is a lucky one, sleeping in his own bed when Santa comes around.

21/12/09 Day 39. Monday. Another blood test

Blood test in the morning. Call comes through at 6.oopm, cancelling his bone marrow theatre appointment for Tuesday. Neutrophils are still too low for a conclusive test even though it has been 20 days since his chemo finished. We now wait to be guided by the Royal Childrens to what is to happen over the next few days. Just when we thought we had Christmas pencilled in.... Hopefully a scheduled appointment with his Oncologist on Tuesday will shed some light.

20/12/09 Day 38. Sunday. Chocolate gives you hair.

Looking for the magic chocolate in his Advent calendar.

Instant Hair...That afternoon...and a beard....!

19/12/09 Day 37. Saturday

Even Owen is starting to say that he would be back to normal if he had hair and the Hickman line was removed. The day is spent catching up with friends for Christmas. A relaxed family day except for the constant reminder to slow down, take it easy and "What would your Doctor say if he saw you doing that?". The impossible task of making an 8 year old act sensibly.

18/12/09 Day 36. Last day of school

Recovering beautifully. O dropped into school again to catch up with everyone. Smiles all around. A nice finish to what has been a big year at Hampton Primary for this family.
Exraordinary gifts or acts of kindness:
We are constantly reminded of the generousity that exists around us. A hug, a smile, some without words and the offers of assistance, in any way. The support is greater than I would have thought possible. Then, there are the gifts that we never expect. There are ones that I mentioned already, then there are some that come out of left field such as a generous amount of credit at a quality take-away meal provider, so we can pick up meals at short notice or sandwiches on our way to Hospital. Or, a group within the school, that sacrifice gifts for each other and provide our family with what should have been theirs. We are touched by each and everyone's actions. And, our consumption of water to replenish the tears is above the 155 litres that we should be keeping to..... Thank you..

17/12/09 Day 35. Thursday

Nothing to report........ It is just a waiting game while Owen is recovering. Misses school and all the activity around it. But, has managed to keep himself busy working on fences and general repair work around the house with his Grandad overseeing (what else would he be doing). Still vigilant about his health. The longer he remains out, the more tense we are, wondering when the next bug is about to hit him. We are rapt to have him home, and are expecting someone to say that it is a false alarm. But as you run your hand over his head as he sleeps, monitoring his temperature as you would with a new born child, the thin hair sharply reminds you that there are bigger stakes at play.
Thank you again to all those that have provided meals. They have been a lifesaver as we try to catch up on the lost month, and try to keep on track for Xmas. The easiest option would be to play it down, but there are others in this house that should not be forgotten. Time is precious at the moment so the meals are a godsend. We are getting a great variation, from casseroles, stir frys, barbecues and more, gourmet delights to hearty family favourites. All wonderful, and I am not kidding. So thank you. We will be publishing reviews for each meal and there will be a monthly winner and wooden spooner. The review will be published in the Bayside Leader.... lol.... Seriously, thank you again, again and again......

16/12/09 Day 34. RCH Appointment

Over half a day at Royal Childrens. Blood test, Doctor appointment and the dreaded dressing change on his Hickman line (this gets easier every time). The meeting with his Oncologist generally had a positive vibe to it. His bloods were on the upward trend. His body is starting to recover, producing platelets, and the tiniest upward movement of neutrophils, but not enough for the bone marrow sample operation. This was postponed to next week.
So, the great thing is that we are home until Tuesday when he is booked in again for the bone marrow sample operation, unless his health deteriorates, or his blood tests show otherwise. This will mean that Chemo will start next week, possible Thursday, xmas eve.
We will wait and see.
Had a wonderful night at the Hampton Primary Christmas carols. He caught up with heaps of people and just felt good being there. Everyone was pleased to see him and pleased to see us out and about. All we need is Christmas delayed for a week and we should catch up.....
Good to have him home, though his usual appetite is back and the pestering that comes with it.. All we need is the hair and all is good.

15/12/09 Day 33. Home and busy

Owen is home, and very busy making a scarecrow for his vegetable patch and sorting out the power for the Xmas lights. Still feeling good. Big day tomorrow though. May be able to watch the School Christmas Carols as they have been bought forward.

14/12/09 Day 32. Monday. 4th day at home

4th day at home. Never expected that. Almost feels normal. Apart from Joel having a severe bout of Gastro. Call to the Royal Childrens for advice. Seperation of children, vigilance with hand cleaning and disinfection, cancelling of any visitors, domestic lockdown.... A typical simple/complicated day.
Joel missed out on his School Buddy picnic which was disappointing but, things happen.. Owen still is bright and energised.

13/12/09 Day 31. Sunday at home

A unit of blood on Saturday and Owen is full of beans today. I recommend it to anyone who is feeling a bit flat. Jogging around everywhere, dancing, helping out and finished off the day putting up Xmas lights. Constantly being reminded that he has a Hickman line in and has to be careful.

O is very aware of his new found baldness. Always has a bandana or cap on whenever he is out in the public. However, he is impressed that he can feel the rain before anyone else can. (A trick that a great-uncle with a similar but shinier scalp mastered)

He is in great spirits and this is reflected throughout the house.
We were pleased with his blood results last Thursday, which was why they were happy for him to come home. We were told that his Neutrophils (Bacteria fighting white blood cells) were 0.8 and healthy person was 1.5 - 3.0. We were very impressed..... However, this was a misinterpretation. His neutrophils were 0.08 on Thursday and had dropped to 0.03 on Saturday . In short, he has no real protection from infection and is not on any antibiotics at present either. So we are blessed that he has been home for this long.

12/12/09 Day 30. Saturday. Up and about, and...... another day at Royal Childrens

Had an appointment at Day Oncology at RCH as a day patient. A finger prick to check bloods. Turns out he needs a unit of blood. 1/2 hr travel in, finger prick and results-3/4 hr, Another blood test to match bloods-1/2 hr, Blood transfusion 4 hours... , 1/2 hr drive home. Bye, bye Saturday...



New laptop.... Another blood transfusion.



Got more hair than my Pappy and his brothers... together..

11/12/09 Day 29. Friday at home

Went to school and caught up with the Ghost Gums for a few minutes. Showed off his bald head... Totally disrupted everything. He has a history of that. Miss Casey was not there, but we will catch up soon.

The new laptop...
O then received a gift that was just amazing. A brand new shiny Samsung laptop!!... A fundraiser within the school was underway when the Wilcox family and MBS Office National stepped in and bought it for him. It is already loaded and ready to go. A 320gb WD External hard drive turned up as well to get started. At a quick glance, there is hours and hours of stuff. And as we have seen already, although he has lots of activities around him, sometimes he is too tired. This will be perfect. Un-believable.
The main reason for the laptop is to try to keep Owen connected with his school community and class next year with the use of Skype. We will keep you posted.
Again, thank you, from the bottom of our hearts.

Clown Doctor Update from 3 days ago:
Dr Doctor and Doctor Tickle were back with Dr Fairy floss. They were very very very funny according to Owen. Dr Doctor tried to do a backflip off the the bed again but broke his bum in half. Now he has a crack in it.... He was hungry and thought Owen's tissue box was a toaster, and ate tissues out of it.. He said that they did not taste nice so he put hand gel on them, then ate them.. My Nana was shocked..Disgusting... Lots of funny fart jokes. This time they saw Owen's name on his beads and kept calling him "Nemo". Owen backwards, sort of, with the "W" upside down. Did we mention that there was a Doctor called Dr Poo.

10/12/09 Day 28. He's out. Home in time for Luke's Birthday

Good results on O's bloods so after some hints about going home, we were out at 4pm. Got home and had the chance to sit and open presents with Luke who is now 13. A teenager.......
A trolley and 4 people were needed to carry everything out od the hospital to the car..

Again, it is a huge flurry of activity as you get packed up, loaded up, and out, trying to remember and organise appointments, medications, nurses visits, etc. But, at least we all got to sleep in the house as a family. That's a good thing.

He is very healthy and energetic, though certainly nothing like his old self, so we may be home for a few days, hopefully, as the next week is booking up with appointments, and more procedures. May even be able to start Xmas shopping..

Our teenager.. Owen and Joel's biggest brother, Luke opening presents with Joel's guidance.

Happy to have his whole family with him on his Big birthday.

9/12/09 Day 27 Wednesday

Still no sign of getting out. Another bag of platelets. There are small bruises all over his body, so it is obvious that he is bleeding easily. Visitors drop in, with gifts... and he couldn't be happier.

Asleep at last, with Lego, paper, textas and pencils right next to him on his bedside table.
Ready to play the moment he is awake. He loves his new hand made quilt(Made by Angus Mc's mum ). Removes all of the generic hospital blankets and proudly puts it on his bed. An opportunity to give him ownership and control over his surroundings, his new home.

Surprised everyone today by giving himself his own finger prick and squeezed out blood for the nurse. Taking control... Show you his secret weapon later this week.

Caught up with other parents on the ward at a dinner put on by Challenge (Cancer support group). Full of wonderful, tired parents and carers. 2 years, 4 years, 5 years......

8/12/09 Day 26. Feeling good

Business as usual. Dressing change 2 days in a row, finger prick, medicines. All done with dignity, and respect. He is a trooper.
Nana sat with him today as Mum and Dad try to catch up on work. Clown doctors came in. I will get him to write some information on them. Luke's Xmas concert in the evening so Uncle Brendan was in for the evening. Kept busy by making artwork and Xmas decorations for his room.
Big brother Luke's 13th Birthday on Thursday, so we will try to get him out for a few hours rather than try to move everything into the hospital.

7/9/09 Day 25. Monday

Peace.......
Big thanks to everyone sending love my way. They still think I will be in for another week cos I am not healthy enough to go home. Play nice, everyone. Scratchyalater. The BIG O

6/12/09. Day 24. Weight is regained

2 bags of blood overnight and a bag of platelets during the day. His demeanor is no reflection on his health. It is amazing.. Disconnected again for 2 hours, so it is outside, with brothers Joel and Luke, some ice creams and all is good. Cool for Cats.....

The Murrays ride their cow in from Hampton for a quick visit...

3.30 in the afternoon. Tired... reconnected to the pumps, playing with his Lego.... Sometimes you forget that he is only an 8 year old boy.

Owen never falls asleep easily no matter how tired. Tonight, he lay quietly for 10 minutes, obviously thinking. Then, he tells me his fear... "When you die, does all the fun finish?". I tell him it depends on what religion you believe in. "What is religion?" (Bloody hell, I knew this would happen). For example, if you believe in God, then you believe in heaven, and you go on living there...."I believe in God, Dad" (No more explaining needed, bewdy). No problems O, but we don't have to think about that. We got some work to do, beating this cancer. "Oh, I nearly forgot"....

5/12/09 Day 23.Weekend at last.

Hair is coming out rapidly. So after talking to those who have experienced it, we think it is best to clip it all off rather than prolong it. Owen shows great delight in pulling out clumps, much to the discouragement and horror of his parents. He test runs bandanas, even walks up and down the hallway, showing off. Visitors turn up and Owen is in great spirits. Then a sudden offer to be disconnected from "Grandma" (The name that the Clown Doctors gave his Pump stand), and O is jumping out of his skin. Off to Maccas, look at the model of the new Hospital and then out into the glorious sun. We watch as he paces ahead and moves around the outside playground like a man obsessed.

"Look Mum, another handful, hee, hee, hee, hee"

"Batman and Robin"
There was much excitement as the clippers were prepared, a final opportunity to show the nurses who have become his friends what he looks like before the trim.... Then reality set in. Through tears and bravado, the locks are removed. Cutting hair with tears in my eyes is not easy. A sharp reminder of why he is here.

A bright red bandana and matching Mario Bros cap and spirits are raised. Joel spends the rest of the day looking at himself, totally impressed with his "scone". Mum is not happy.


Mum stays the night. I sleep at home and my heart breaks as I leave, because our warrior boy is now sad, holding back tears, but trying to be brave. Tonight, he makes a pact with his Mum that his fight is with cancer and no longer with her.... I walk away drained...

"Australia's Mosted Wanted .. Arrested .. Caught eavesdropping"

4/12/09 Day 22. Hair loss begins

Owen says

"Cool as, watching dvds in my Ben 10 pjs"

Owen says

Not allowed to do this at home, "sit in bed eating ice cream watching TV"

Thought we may be going home even though the last experience was not a good one. Doc has thrown caution to the wind and said that we should stay for a few more days at least. He has zero neutrophils, the white blood cells that fight off any infection, and is only protected by antibiotics. This will go on for about 5 days until he starts producing them again. I think we are going to go mad as we look out over the parklands.

Without any warning, wisps of hair fall on O's table as he is eating. He lets me know that it has been happening all day, and with a gentle tug, strands come out easily. With much excitement, he has to call Lisa, a family friend, a breast cancer survivor, and Owen's trusted senior advisor and mentor on cancer and let her be the first to know. A simple 10 minute chat, and everything is demystified. Bald is cool..Too easy.. Thank God for Lisa.... I did not want this chat.

3/12/09 Day 21.

Pancakes again. Eating well and putting on weight. Owen has a teacher come in everyday to keep him smart. There is plenty to do to keep him occupied, but he tells me that he would rather not have leukeamia and be at school. Fancy that.. I know that he misses school as he asks for the beautiful cards to taken off the wall so he can study them.. His latest one is a beauty!. Visitors and phonecalls to his own bedside phone help break up the day. And, he is starting to give cheek to the nurses.. Xmas decorations starting to appear everywhere. Hints of going home again, but we are unsure/confused as 24 hrs earlier, the advise was that we were in for a while, possibly out Xmas day only. Ups and downs... Platelets again today.

The homecooked meals that are delivered nightly are a lifesaver and give relief to an exhausted family trying to keep the homefront normal. Thank you, thank you, thank you....

2/12/09 Day 20. Doctor discussion

Another day of good health. Pancakes for breakfast, dvds, playstation, tv, all before 10am.
A frank discussion was had with the Consultant. This took the wind out of the sails and it has taken a while to process such news. To keep it simple, Owen is not playing by the rules, which is not unusual. His leukeamia type is uncommon which poses a new set of challenges. It is still not falling into the standard catergories so it is not possible to use proven protocols to attack it. And, his healthy disposition and wellbeing are no indicator of what is going on within.

Now is the time for the clever Doctors, the caring Gods and every bit of available positive energy to join forces to get us through this. Time to believe in all the positive stories that we are told and use them to strenghen our resolve. Apologies for writing in "code".

1/12/09 Day 19.

First round of Chemo finished today. Blood transfusion overnight (starting to sleep through the flurry of activity going on around us) and a bag of platelets today. Apart from his physical appearance and an obvious decrease in activity, you would never know that there was a problem lurking within, as his spirits are high. His immunity will keep dropping despite the completion of the chemo round, so he is still very vulnerable to fever and infection, and in 10-14 days, as new growth should start to appear in his marrow, they will take a sample and start preparing for round 2. Talk of spending Xmas here with some time out during the day to go home..