28/1/10 Day 77. 9th Birthday.

Started a new 29 day cycle yesterday. 9 hrs at Royal Childrens and home. Still hungry and feeling good. As predicted by Dr Waters, the changes started, between 1-3am...... (yep, the time that we like to be in deep sleep). Up came dinner all over a child that was too unwell to move.... Sheet changes, pyjama changes... Welcome back, we have missed you....
Slept in 'til 9am on his birthday, happily scoffed down pancakes, ate hot dogs for lunch then it slowed..... the ravenous beast just stopped, skipping dinner and desert. Happy but his temps are starting to rise and he prefers to lay down on the couch. The changes are much quicker than we expected. I guess if you put toxins into your body, then it wants them out....quickly.
Now, should we think positively and not pack bags, or be realists and prepare? Trying to find the happy medium....
Quiet birthday celebrations with family and family friends.
Happy 9th Birthday, our little/big man...
Got a genuine 2nd hand fully fledged carpenters tool belt from the builders next door .. It is already full of my tools (temporarily), and he is stoked!

27/1/10 Day 76. What is a Hickman line.

What are those tubes sticking out of Owen's chest?

I have made a sketch to show where they go. They enter his body and travel under his skin up to his neck where they are turned around and fed into his jugular vein, then back down to the top of his heart. There is a scar on his neck where the surgeons cut in to the vein.

Everything has healed up, and Owen can have a shower as the clear bandage that you can see in previous photos is like a verandah, stopping any water getting where the tubes enter his body, but he cannot have a bath or swim in case the area gets infected.

Owen has to play carefully as well as it would be a real problem if the line was damaged or torn out. He pins the ends to his shirts to stopped then getting caught.

Apart from the inconvenience, they are great for medication and fluids.

We hope that he will have them for a year then they will change it to another type that will let him play sport and swim again (and rejoin Nippers)

25/1/10 Day 74. The physical changes.

1st week. 33 Kgs

10th week... 41Kgs
Chemotherapy drugs are used to kill off the cancer cells, but the side effect is that they kill off other good cells in the body. To combat that, O is given steroids to stimulate growth which causes weight gain. Sucks big time....

21/1/10 Day 70. Last day of steroids

Last day of steroids and not a moment too soon. The need and obsession with food is unfair. O breaks the day up into 1 hour blocks and lists his snacks to try to get some sort of order. He knows that the steroids are playing with his head and it wears him down.
Back for surgery at Royal Childrens today for another Lumbar puncture and Bone marrow aspirant, setting things up for his next block of medication which start next week. He was due to start his next block of meds next week on his 9th Birthday. This medication required a full 8 hours in Day Oncology, but Dr Waters moved it forward a day. Owen was rapt.

18/1/10 Day 67. Steroids

The Steroids.

Final week of his 1^st Block of medication. The side effects of Steroids stimulate appetite and weight gain. Last week Owen put on 3 kgs... The obsession with food is unbelievable, from the moment he is awake to the final snack that he pleads for, just before he falls asleep. He plans up to 2 days ahead with lists and ideas on how to prepare food. A cookbook has started. And he has become the best kitchen hand ever. It would be funny but it does get frustrating for Owen and the household. And he is not too bad…. We know of children smaller than O who have put on 6kg in a week, or woken up the house to be fed in the middle of the night and 3 year olds that are caught in the fridge in the early hours of the morning. He has gone from 33kg at his lowest to 41kg, in 6 weeks.

Breakfast and awful tasting medicine.......

And then there is the talking…. Constant chatter…. And it goes from one subject to another, then another….

Still, these are just side effects, and they will pass. We have many more to come as his medications change with each 28 day block. Apart from that, his general health is quite good.

Bulking up.. Ready to switch codes from Soccer to Rugby Union...

13/1/10 Day 62. 2 Months today since diagnosis

As you can see, pace has slowed with the blogging. Owen is at home and we have started to get our head around his better diagnosis. We were traveling at breakneck speed before, and as Owen and I were sleeping in the Hospital, I had time to prepare each blog. Now I am out in the real world, blog time is harder to come by. Also, things have slowed down with Owen's treatment. The earlier treatment plan was for 6 months and it was super intense... The doses were more powerful and the impact was greater, and the outlook, far worse. Now, we are expecting a 3 year treatment plan, and most of it, out of Hospital... finger crossed...
The medication side effects are interesting though. His moods have settled but he is taking steroids and the obsession with food is unbelievable..

The Hero.
As I walk by O's room and see him sleeping quietly, his bald heard reminding me constantly that there is a battle going on, I can only think of how proud I am to be his father.

At present, Owen is missing out on a lot in comparison to everyone else around him. Tonight, Joel and Luke have left for 4 days with Nan and Grandad. We know Owen desperately wants to be with them yet does not complain once. He has a day at the Hospital tomorrow, and we prefer to be close to the Hospital at the moment.

He is our Hero because he never complains...... never. He wonders why he was chosen to have cancer, he is unhappy when he has to get needles, finger pricks, take tablets and medicines that are vile but he just soldiers on. I watch as he dry reaches, with the taste, then, he calms himself down and tries again. He shows no resentment to others as he takes on all the tasks that are laid in front of him. Instead he accepts them all as challenges.

With his central line attached he cannot swim, wrestle, play physical sport. He has been asked not to ride his bike, nor climb trees and he is too tired anyway, but like any other child with a illness, he accepts, revises his aspirations and goals and moves on. Then curls up in bed at the end of another day, filling out puzzle books, reading building books and prepares another list in his head for the next day. You can only marvel.. And it started only 2 months ago........

8/1/10 Day 57. The Magpies again...... But better....

Unbelievable.....written by Joel.
Thanks to another wonderful gesture by the Sewards family, in particular Michael with his business partner who kindly organised a surprise invite to the Collingwood headquarters. Owen and I were invited to the Lexus centre (we told mum that we would be fine, but she insisted on coming to protect us). Heath Shaw and Ben Johnson met us at the entrance and unbelievably, walked us around showing us many facilities and rooms, including the meeting room and locker room. Owen saw what he wanted most for his birthday. A milkshake making area with the longest line of flavour pump packs ever. After that, Owen, Mum and I got to meet many players and even Bucks. We got all their signatures and had lots of fun. (Mum did spend too long trying to find out what her favourite ex-player was up to). All the players were really nice to us and we just loved being there. The day was the best we ever had.
The 2009 jumper signed by the whole team.. An unexpected gift.

We found out that Ben Johnson was especially interested in Owen and has helped organise this visit. He has a young family member who is currently getting treatment for cancer and has spent a lot of time on the Oncology Ward at Royal Childrens with him. He wants us to keep him up to date on Owen and his progress. Heath Shaw was also interested. He was cool as, and kind.

We would like to thank Michael, his anonymous business partner, all the players and especially Ben and Heath for giving us so much of their time.

1/1/10 Day 50.(Approx. 1000 days to go, give or take) Happy New Year.

Happy New Year.............
With the new diagnosis in hand, we are ready to take on the New Year. We know that everything is better and brighter than before but it would be helpful if we had a ceremony, maybe with a framed certificate thrown in to make us believe it. The original discussions with Dr Waters were like being hit with a sledgehammer as we tried our hardest to believe in the positives. Now we can see light, all we need is the 3 years of treatment to go by as quickly as possible. It doesn't seem that long ago that we were in a hospital with walls decorated in get well cards or we had nurses dressed in protective smocks, gloves, face masks and eye protection, administering medication into Owen as he lay in his bed at home. The stark contrast of a child laying on beautiful sheets printed with diggers and dumptrucks, a nurse in safety apparel and the sounds of children playing outside. It seems a lifetime away, yet was only 4 weeks ago.
As I talk positively, I think of all the other children that received the same "positive" result of the better form of leaukemia who are still battling 3, 4, 5 years on. Owen still has a lot of work to do and we need a bit of luck on our side as well.

Health.
O is bouncing along, and we take each day as it comes. We could not be happier but the changes are significant. In the morning, pre-leukeamia, he would never sleep in, would be dressed, fed and out the door or up to some large project within the house before anyone was fully awake. He was always busy, bus, busy, building something, rearranging, modifying, drawing, mostly without consent, or warning.. Now, he sleeps in and knows that he is tired. He is still active, but subdued. Lego and cars are now his favourite pastime. His day is slower than it normally would be, but there is little frustration, which makes it easier.

Outlook.
With his treatment changing over to outpatient, with most of his medication taken orally, and a weekly visit to the hospital, there is a good chance that he will be able to go back to school.... Dr Waters wants Owen to lead as normal a life as possible. So we will watch his health and see what he can do this year. The possibility of going back to school is the greatest news that Owen had heard for a long time. He was absolutely stoked....
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At least O has a beautiful shaped head, unlike his Dad and Joel.

31/12/09 Day 49. New Years Eve. Oncologist Appointment.

Met Doctor Keith Waters (Owen's No 1. Doctor) for an update and we moving along in the right direction. In a months time he believes that he will have a "roadmap" ready for us. This is a guide to how Owen's treatment will be over the next 3 years. Keith is still calling it A.L.L. (The better leukeamia to have if you want to have leukeamia) and we are cautiously celebrating. The tests done at Royal Melbourne have managed to produce results. We are in a much better place than we were 3 weeks ago when they had nothing and were expecting nothing. The New Year is going to be better. We do know that..... The prognosis has gone from pretty bad to pretty good. I prefer not to talk in percentages as this little fighter is not going to be a statistic. That is obvious from his positive outlook on life... The clouds are starting to lift and this is a good thing..

30/12/09 Day 48. Wednesday.

Business as usual, being a family.. Owen is active doing everything that he would usually do. Mornings are the real difference. He was always the first up, ready to take on the day. As a rule, he had to remain in bed until 7am. Now, he sleeps through the morning light coming into his room, alarms trying to wake him for an exciting morning of fishing in Melbourne (Yes, they still believe that you can catch fish off a pier).

He will sleep in to 8-9 then he starts the day with his first round of tablets. We have given him control of his medication, and there is a ritual which he has, where he prepares yoghurt, cuts his tablets to manageable sizes, cuts soft lollies in half to kill the taste of each tablet, drink bottle is filled and then he starts his breakfast. He has to have food in his stomach before he starts his tablets. The tablets taste terrible and if all goes well then they are gone in 20 minutes. Or nausea takes control within a few mouthfuls of breakfast and he is back bed for an hour or so before he resumes breakfast. Some mornings we are done by Midday. A lot of fun as you are trying to rush out the door for a Doctors appointment.

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..
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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.

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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.