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....

7/6/10 Central line

Owen's Hickman line is sorted out at home once a week. The bandage is changed, the ends are replaced, the line is flushed and blood is drawn to check that everything is clear, then an anti clotting fluid is put down the line. It takes about 30 minutes, lots of swabs, gloves etc. and the house smells like a hospital again reminding us that we are looking after a boy who is unwell..

Bloods are going down and his health is as well. More days off school. Today he was dizzy and had trouble walking, so another day in pyjamas. Looking forward to the end of this round of medication.

A big bag of all the stuff used to maintain Owen's Hickman line.

His hair is nearly ready for some product. It is thin and fine and nothing like the mop that he had originally.

31/5/10 Day 204. Been busy.. Owen went on the Grade 3/4 School camp.

We have just returned from Camp Rumbug at Foster North.
Shadowed Owen for half a day then left him for the rest of the camp whilst I helped out on other activities. It was the greatest experience for both of us........ especially as we thought he was going to miss out..

Toasting marshmallows which he handed to me. As the chemo affects tastebuds, Owen does not eat sweet things. I do that for him and it shows..

6 month anniversary photo

Mum and O on Owen's 6 month Anniversary.
It was a happy day....
We are proud of him.

Check out the hair. Dr Waters has chosen to give Owen treatment over 2 months this time. We saw 3 girls who were diagnosed at the same time. The treatment is different. They had 10 straight days of chemo. They have lost all their hair again.

21/5/10 Day 194. The dreaded temperatures

Thursday morning. Off to School late. 10am start.
No appetite after chemo treatment. However, he tries and brings it back up.
Owen and the rest of the family are completely comfortable now with vomitting. Joel would protest when Owen vomitted at the dinner table. Now, we just hop up, change sick bowls or bags, wipe his face, rub his back and then sit back down for dinner as if nothing happened. It is just a part of life for the minute.
We get a phonecall from school that Owen's temps are over 38. Nan and Grandad pick him up.
And then we wait to see what the night brings us. His temp stays up but we remain hopeful as the house has been healthy. His temp wanders up to 38.5 and down again several times but we sit it out. Off to bed at 11.30pm, set alarm for 2am. His temp stays up all night but he sleeps well.
Check again before leaving for work. Still up 1 degree.

Friday morning:
I call at 8am and he is awake and full of beans. "No Dad, I am not well...... I am excellent...!" Can't argue with that...
Yep...like a broken record... Lets see what today brings..

20/5/10 Day 194. Thursday

Owen is tracking beautifully.......after 2 days of chemo treatment.
Tuesday-2 shots into his central line (And then dropped off to school for the afternoon..brilliant).
Wednesday-The dreaded double injection into the thighs. 4 hour wait for an allergic reaction.
No temperatures, throwing up every now and then, but he is the usual cheeky monkey. The reaction can be delayed so we will just wait and see what the next few days bring.
Big news..... The biggest event on the Grade 3 & 4 calendar is the 3 day camp at Rumbug next week. It is spoken about constantly and greatly anticipated right from the beginning of the year. Owen had always accepted that his chances of attending were low, because of the 3 hours between camp and Royal Childrens. Dr Waters did not want to talk about it until we got closer to the time.
Owen was scheduled for a theatre visit and chemo right in the middle of the 3 days. Dr Waters is always concerned about his patient's mental state, and is aware of what Owen will miss out on. He peered down his glasses at Owen's puppy dog eyes and reluctantly postoned treatment for 5 days. It was a wonderful. Couldn't wipe the smile from his face.

Looks like I'm going on a camp as well (In case thing go pear shaped)..... Cold, water activities, damp grass.. all my favourite things... Yay

6 Months today. 13/5/10

Well, he keeps chipping away. 6 months since diagnosis.
2 days at school this week, so everything feels great......
2.5 years of treatment left and 4.5 years before they will declare him cancer free. Not long now....
Owen is ticking the boxes, and mentally strong. We are proud. The roller coaster of emotions has settled a bit, but only while his health is good. We did think that we would see a pattern in treatment and his health. Unfortunately, there is none. It is one day at a time.
But, there are a lot of positives and the fact that he is healthy and all his tests are on track is wonderful. If he can keep this up, and stay healthy. If there are no suprise hospital admissions then the year will not drag. Roll on 2011....

8/5/10 Day 182. Saturday.

Friday. Bloods looked good so it was time to increase his doses. I came home to a sad boy tucked up in bed.

Saturday morning started slow, but he improved. It was the familiar sight of O dragging himself out of bed, sick bag and quilt in tow.

Saturday night...... Bloody hell! O's demeanor changed and he laid on the couch, wrapped in blankets, complaining about the cold. Temp - 38.3 degrees.... 38.5 and we would be heading into emergency. O was not happy at all about this. "Why Mum,I just want a normal life". Slowly his temp dropped and Mothers Day was saved... Packed all our bags anyway...

An old photo. 18 months ago. This is the cheeky boy that we will get back when it is all done..

5/5/10 Day 179. Feeling Great....

After having last week off school, Owen is back and feeling great..... (and everyone feels great )
Throws up all his breakfast before school on Monday morning, but holds it down yesterday. Still not eating much as the chemo takes away his appetite.
Yesterday, he came home excitedly talking about the wonderful day that he had at school. Non stop chatter about all the little things. We just smiled.
Hopefully, he will get 4 days in this week before chemo on Friday.

29/4/10 Day 173. 4th day from School.

Friday last week. A day at hospital changing dressings, seeing Dr Waters and blood tests. 6 hours
Monday. ANZAC Day.
Tuesday. Lumbar pucture, bone marrow sample, 3 Chemo shots. 6 hours
Wednesday. 2 injections into the thighs. 4 hour wait. Started throwing up that night. 7 hours
Thursday. Too sick to go to school.
He wants to be back to school tomorrow (Friday) because he doesn't want to miss out on all the science experiments..... Here's hoping.
No complaints. I am proud of him.......

26/4/10 Day 166. Monday

After 3 weeks of waiting for his bloods to improve, we get ready for the next round starting tomorrow morning. He has been really well, full of energy and loving life....
Royal Childrens in the morning. Day Surgery for a lumbar puncture, to check his brain fluids and give him a shot of chemo, then after he has recovered, up to Day Oncology for 2 lots of chemo into his Hickman line. Back again the following day for the dreaded double injection. I think by Wednesday night we will have a very subdued and quiet Owen.....

20/4/10 Day 160. Tuesday. Weight loss in 3 months

Came across this photo on the weekend. It is 3 months ago on Owen's 9th birthday. 2 weeks before going back to school. 41 kgs at the height of his steroid treatment. Now he weighs 36 kgs.
Just stop eating and the weight falls off.
.
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The other photo was taken last Saturday at the Challenge family day.

19/4/10 Day 159. Monday. Back to School

A week late but O went back to school at morning recess. A trip to the Royal Childrens first for a blood test. Neutrophils are 20% of what a healthy child should be. Healthy enough to go back to school, but open to infection. It is a risk worth taking for everyone's mental health. His recoveries are slow and Dr Waters wants to start his next round as quickly as possible. We are to wait a week before anything is to happen.

17/4/10 Day 157. Saturday. Challenge Family day.

A Great family day. Check out Owen's hair........

Never in my life did I think I would be attending Family Days for children with Cancer.

The children went out for a cruise in a big boat and were "attacked" by a Pirate boat complete with a Jolly Roger flag and 5 pirates with Black bandannas. The Rotary Club had prepared 5 boxes of ready made water bombs. It was the biggest water bomb fight that anyone had ever seen. The laughing and squeals of delight were priceless. Eventually the 5 Pirates gave up and handed over the treasure, a box full of freshly cooked fish and chips, and dim sims.... It was a fantastic day..

15/4/10 Day 155. Thursday

Owen has gone away with his Grandparents for a few days and will be back tomorrow (Friday). He has been really well but we were told to keep him away from crowds (no school) as his neutrophils are very low. He is back into hospital for some blood tests tomorrow to make sure that he is improving. The moment that his bloods reach half that of a healthy child, the new round of chemo will start. Leukemia grows rapidly so they need to keep it in control. I do not think Owen would remember what it would feel like to be healthy after 5 months of treatment.

12/4/10 Day 152. Monday. No luck. Still here.. And then his results improved....He is out!!

Bloods are on a roller coaster still. Down they went so another night in hospital.
Owen sharpened and sorted his pencils in readiness for school but that won't be today.

Revision...... He is out!!! Neutrophils are very low so he will stay home but he is out...and happy.....
.

11/4/10 Day 151. Sunday. Might be out today.

10 days. Might be out today. Should have his blood results around midday. He is improving sloooowly..... We were given the opportunity to leave yesterday and we were warned that his neutrophils were terribly terribly low and the chance of a fever are very high. If this happens then the only way back is through emergency.... This is the hardest part. We have experienced this already, and there are plenty of similar stories on the ward.
Basically, you are held in Emergency where no beds are offered to parents to sleep on while you wait, hoping desperately for a slot to come available in the Cancer ward. He is safe on the Cancer ward because it is a sterile environment. If a bed is not available there then he may end up anywhere in the hospital (This happens a lot). This is not good as he is exposed to any bugs from other sick children or their families.
So we chose the safe option and stayed in for another night.
Doctors don't want Owen to go to school for now. Might be in at the end of the week.

8/4/10 Day 148. Roller coaster ride - And down we go

And his bloods go tumbling back down. Yep...... Still here..
No appetite and flat... Try again tomorrow

7/4/10 Day 147. Day 6 in hospital

Day 6 - Get us out of here.......
Neutrophils are on the move. Yayyy!
Energy levels are starting to improve as well. Owen has seemingly been well, but we would go for a walk up the corridor to promptly turn around and hop back in bed. Today he bounded the full length and back again.
Lets go home......... please

6/4/10 Day 146. Still in hospital........

5th day in Hospital..... and we all want to go home.
Owen is quite well and starting to get flustered with being in the hospital. His bloods show no sign of infection. His body panicked and gave him a high temperature (pretty normal) sending us into Emergency. They do not take any risks with "Chemo kids".
Unfortunately, his bloods are taking a while to recover and we are in a hold pattern until they do. I think we will be here to the end of the week. Last time it took 14 days for his bloods to recover. Hopefully it will be quicker this time...

2/4/10 Day 142 Good Friday Appeal Day

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Met the real Ronald McDonald, Wilbur the drip from Melbourne Water (Bizzare...) and caught up with new cousin, Baby Astrid.