25/8/10 Day 291. Day Onc and a famous Bowditch.

As predicted, Owens's blood counts are low... but rising. A blood test at home the day before tells us that he needs 2 units of blood. I think these are numbers 5 & 6 for this round.

A famous visitor arrived.. and Owen was stoked. Yep the famous Aria award winning Clare Bowditch a specially signed latest critically acclaimed Album (Currently No. 10 on the Album charts). She discussed all the famous Australian musicians that she knew, was supporting Leonard Cohen on his Australian tour, and recently interviewed Julia Gillard. Busy, busy bee.....

We now wait for the new round and Dr Waters is talking positively. All is good..

Hair is coming back slowly.

Sitting on my Red Chair, getting two bags of red, chillin' with a famous red...head.. Cousin Clare

23/8/10 Day 289. Monday. Hair growth revelation

Don't compare our skin tones as my Doc told me I need more sunlight. Vitamin D levels of an old man... 

Did a lot of thinking this weekend about hair. Owen sees a Dr every week and has lots of medicine. I don't see a Dr very often and guess what we worked out.

Beer and donuts makes your hair grow.....!

Owen radiates with a beaming smile and pale skin.   Had a busy weekend, removing trees getting ready for some landscaping work. Owen desperately wanted to help but spent most of the time sitting or lying down.  We think he will be needing blood soon and this should pick up his energy levels.

  We might have grass in our backyard for the 1st time in 4+ years. Luke can go outside without carrying mud or dirt back into the house. Yee hah..!

Also went back to school today.... Fantastico...... Forgotten how many days he has had off...

Home injections.

Home Injections.

In the last round we had to give Owen injections at home.

A temporary plastic tube (cannula )was fitted into his stomach muscles and we would inject chemo into it. This would happen for 4 days then we would remove it. If you click onto the photo, you can see the bruising around the cannula caused because he has low platelets and bruises easily.

We have to keep this medication in the fridge, and use gloves and sterile wipes to stop infection.

No problems.....

19/8/10 Day 284. Another day off school

Neutrophils are Zero. Nothing in the tank to protect him from any bugs... So we watch him like a hawk.
His Nan and Grandad are here to help out, as he is too unwell to go to school.
He is at the end of this awful cycle and Dr Waters believes that he will need to rest for 2 weeks before his bloods are good enough for another beating... He warned us again that he will get a fever. Bags are packed..
23 school days - 15.5 days off school. Juggling, juggling........
Then, there is the catching up. Thank you to all that supply us with meals. They are appreciated. They give us time and we need it desperately. Most of all, we need sleep.
We do the best we can but are exhausted.. and worried...
Owen keeps us on our toes, like he always has........!

15/8/10 Day 280. I have never been so scared.... never, ever..

Another tough week.
Monday - Curriculum day (No school)
Tuesday - Owen went back to school for one day
Wednesday - Day Oncology, 2 Chemos including the dreaded double injection into the thighs. Blood counts are down, so 2 bags of blood are ordered. Only enough time for one today. Home late.
Thursday - Grandad is down, looking after Luke who is too unwell to go to school. Lee leaves with Owen for Day Oncology for his next blood transfusion (4th bag in 8 days). I take over from Lee, then pass him onto Pappy to finish off and drop him home to Grandad,...(Did I mention logistic nightmare). Owen is fine.
2.30pm, Owen called Lee distraught, hands are hurting... He sounds tired and Lee insists that he rests.
Constantly checking up on him and when Lee gets home at 4.30, she could see that he has deteriorated..

Resusitation Room in Emergency - Scary place

He cannot talk clearly, and she could see the fear in his eyes. Ambulance is called.....

I am at Emergency when he arrives, and he is unloaded, smiling at me as if he is heavily sedated. He cannot walk, talk, cough, swallow saliva and communicates with hand signals taught to him by the Paramedics. I am stunned......... Owen has the most beautiful handwriting and this is deteriorating before our eyes until we cannot read it anymore. He cannot find letters on a laptop. We have been in Resusitation rooms before with Luke's epileptic fits and Mum's stroke and we are frightened. I pace out of Owen's sight wanting to tear the world apart. He has fought so hard and something is taking his dignity and his soul from us.. The fear.. Like watching a timebomb, with medics searching but confused. Cat scan clears bleeding on the brain (Likely as he has minimal platelets). Now the worry of a brain infection. Owen keeps going downhill. We are in luck as an oncologist is in and she comes down to check on him.
By process of elimination, he has the signs of a toxic reaction to chemo put into his spinal fluid..9 days earlier.. Rare, and unlikely to happen again. Reversible and he should recover withn 2-5 days.
She hops on Owen's bed, wraps her arm around him and explains this to him and Owen breaks down. He had been brave, fighting all his fears which are unfair for a child his age and she allowed him hope. The night was not over but we were all relieved.
7 am, next morning (13th of August - 9 month anniversary!), he smiles at me and says hello. His voice is back and we cuddle, elated.......
His recovery is like a miracle, but he is admitted anyway for observation and more testing.
Diagnosis is confirmed and he is released at 10am on Saturday morning. Like walking on a cloud.
Hopefully back to school tomorrow. Still have to watch him like a hawk.
These events heighten Owen's fears and worries....He is frightened of going to sleep... and wakes up, absolutely startled, calling for us, fearful of the disease that he carries.. Hopefully this will pass..

10/8/10 Day 275. So far so good.

Back to school and feeling fine still. Great Stuff.
An observation.......
On 2 occasions when going into Day Oncology, a fantastic and very experienced nurse has said that when these children come in to get blood transfusions, she looks at them in awe. Their red cell counts are similar to a child coming through Emergency after a major trauma such as a car accident. Where they have lost a lot of blood and are fighting for their lives. The cancer kids get used to their sickness and learn to compensate and live with it.
She told me this after she saw Owen walk in with his heavy backpack after theatre. She thought, "Wow, I cannot believe that he is walking in, carrying his backpack. His count is too low to be doing that" ......
Amazing....

7/8/10. Day 273. Sunday. Trying times

It has been a tough 3 weeks. And Owen has just been the soldier as always. In the last 3 weeks of school (15 schooldays) he has been away for 9.5 hays. Last week went as follows:
 Monday - School
Tuesday - Theatre (Lumbar Puncture), Day Oncology (Chemo and 2 bags of blood)
Wednesday - School. Noticed dried blood in his Hickman line bandage before he showered that night. Called the Hospital and they told us to come in the morning, unless his health deteriorates. Platelets must be dropping, and his blood is not clotting.
Thursday - Day Oncology (Blood test and a bag of platelets.)
Friday - Home, unwell.
Expected one day off school. Got 3 instead. A logistic nightmare.

However, he got through the weekend with headaches and stomach pain. Worked like a demon, trimming trees and cleaning up around the house and finished off doing his new 2nd favourite thing to Building - Cooking....!

.

We are blessed.

We have befriended a family with a daughter 2 years younger than Owen, diagnosed at the same time, and she is fighting a lot harder......

A painful remainder that the stakes are high... 

Despite our struggles, O still tracks well, ticking the boxes. We have been waiting for his temps to rise, and they threaten to....., but they stay below 38.5. Each day we stay out of Emergency is a day worth celebrating.

.

Is it George from Masterchef?

No.. Owen can grow his hair back......

3/8/10 Day 268. Royal Childrens. All day.

Lumbar puncture at 9am. Doesn't matter how many times I do it, watching any of my children getting anesthetsised cuts through any macho bravado. I am glad he is asleep before he sees my fears. 5 minutes later, I am composed and wait for him to recover. 

Dr Waters is happy. He bets that we will be going through Emergency within a week... Bummer...... How's that for positive thinking. Unfortunately, with 36 years experience, Dr Waters knows a lot.

Some chemos are instantaneous and others slow working. The slow working one is going to knock him about. He needs 540ml of blood today. It starts at 1pm and we are out at 7.30pm.... Bloody long day! You can see his colour come back. Grey to pink... And his lips go from dull pale pink to red.

Lets hope he is at school for a few days this week..

The treatment room where you get medicines and injections in privacy.

Every home needs one....
You can see his pole and pump with life saving bloods hooked up to him.

2/8/10 Day 267. Rattling tins at the Rugby League

Dr Waters is a little different to other Oncologists. He believes that we have to trust our instincts and try to live life as normally as possible. Dr Waters is known as a  risk taker, which we like .... He says that the priority for us is Owen's mental health. He sorts out the rest. If you want to obsess over numbers, times and progress, he is not for you.

So, despite missing 4 days off School, he got off to a mate's birthday party which he loved and shaked tins for Challenge at the Melbourne Storm game. He and Joel worked the crowd well. They had fun... Owen wants to do it next weekend...

"Challenge, supporting kids with Cancer" , "Accepting cash, credit cards, car and house keys"
You can say anything when you have a bandanna on, and a smile that lights up a bleak dreary winter day. People drop in money and wish him well.

Double trouble at the Storm.
Bunnings supplied beanie to cover the shiny scalp..