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.
Monday, June 28, 2010
Thursday, June 24, 2010
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...
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...
Wednesday, June 23, 2010
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.
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.
Sunday, June 20, 2010
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....
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....
Friday, June 18, 2010
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....
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....
Monday, June 7, 2010
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..
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.
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