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.

1/4/10 Day 141. High temperature... Straight to emergency

Owen had his final medication today for the 29 day cycle. Bloods are really really low and he has no neutrophils, therefore he is extremely vulnerable to any bacteria attack. We have been here before so we are confident that he will be fine. He is flat and spends time on the couch.
As we start to wind down getting ready to enjoy the Easter Break, Owen's temperature spiked....! Damn.... We call the cancer ward and they want him in immediately....... So he is admitted through Emergency at 7pm. Looks like 5 days of antibiotics.... Easter in hospital. O was not happy at all with the news that he was going in.... but packed his bags. A bacteria infection without neutrophils is life threatening.

Hope Easter bunny knows where we are......

29/3/10 Day 137. Monday

Made it to the GP. Sat in a corporate area with chairs and shade on a balcony. The boys could get lemonade from the bar whenever they wanted...luxury...! And to top it off, a surprise helicopter ride over the track for 6 of the children. Owen absolutely loved it.

Sunday, we caught up with the newest family member, a brand new cousin... Cousin Maya has a new sister.. Mum and Bubs are doing well....

Monday, some large bruises have appeared so off to the Childrens. A blood test, wait an hour, crossmatch, another hour then a bag of platelets, another 3 hrs. 1 hour to the hospital, 1 hour home. There goes 6.5 hrs.......

26/3/10 Day 134. Friday

We are awake from 2.30am to 4 am with Owen crying, unsettled and in pain. He pleads to go to hospital because "they will look after him there". Yep, the drugs are working. He is hot, itchy, and distressed and eventually throws up twice at one hour intervals. Exhausted but calm, he falls off to sleep. All he wants is to be well enough to go to the Grand Prix for the first time on Saturday with Challenge, the childrens support charity. And, is really disappointed that he could not get off to school today to present a project as it is the last day of term. The good thing is that he is young enough to catch up on all the things he is missing....

25/3/10 Day 133. Thursday. Royal Childrens Day.

A long day and we have to come back tomorrow....... for more..!
Owen is coming to the end of this 29 day block of treatment. We were in today to get his weekly medication, including the dreaded double needle into the thighs. But his bloods had taken a huge dive from the chemo and he needed topping up. The nurse and Dr Domnie are really impressed with his health considering that his counts are so low. The body is remarkable.
He has his blood taken for testing and cross matching. We wait for results, see his Doctor, have his bandage changed and start filling him up. 1 bag of platelets and 2 bags of blood. A total of 750ml of blood products. It takes 2.5 hrs per bag and we ran out of time.
Tomorrow, he gets his needles and another bag of blood. And he has to wait 4 hours in case of an allergic reaction. He misses out on 2 days of school including the last day of term. Bummer........
Left home at 7.30 am. Home by 7.40pm.
Tomorrow....Leave home at 8.30am... back by 4pm.
Owen chats to a psycologist today, as he has been worrying a lot about his mortality lately. Big thoughts for a little boy. The door is left open for more chats in the future.

Day Oncology. This where O spends a lot of his time. This is half of the room. In the other half is 2 beds and 3 more chairs. It is a nice bright room. As you can see everyone has gone home except a nurse who is waiting for Owen's bloods to finish. He would much rather be at school....

20/3/10 Day 127. Saturday.

What a week. After an awful weekend, the little man went to school everyday, without any time in sickbay. The rollercoaster...! From the low of Friday when he was terribly unwell to the highs when everything seems so normal, you wonder what you are worrying about. 3 years then we are all finished....
Oh, then it changes slightly, just to keep you on your toes. This morning for the first time in nearly a week he drags himself out of bed, with his blanket, sick bowl and Dr Ben (his monkey). His health is starting to deteriorate as the chemo starts knocking him around. But, a quick vomit, some anti-nausea tablets, and we are right to go, hopefully..

Bored in Day oncology, waiting, waiting.. Time to learn how to go cross eyed.