Google+ Followers

Friday, February 18, 2011

Finished Intensive Phase of Treatment!!

Oscar has officially finished his intensive phase of treatement. All his blood results show a great recovery so far except his neutrophils are very low (this is due to the fact that he is fighting off a virus Auden picked up at pre-school). Oscar was supposed to start maintenance chemo today but as his neutrophils are low we are delaying it another week.

I will know more about maintenance chemo once we start but basically we will be giving Oscar chemo every day for the next 18 months. It will be in tablet form so we can simply dissolve it in water and not so simply get Oscar to swallow it each day. We will still be visiting clinic weekly to keep track of his blood results and ensure he is on the right dosage and so on.

So we are in a time of transition. Auden is getting used to Pre-School, Oscar is recovering from treatment and adjusting to Auden's absence 2 days a week, Pete has been transferred to a new work site in Zetland and is working longer hours and we are all collectively adjusting to the change from living in 'survival' mode and trying to discover some idea of what a more 'normal' life is like. They say once you finish the intensive treatment you get a chance to stop and really comprehend the situation - which is a good thing - but to go easy on yourself because a lot of emotions may come up. That's what they tell us. We'll let you know how it goes.

In the mean time I would just like to say that we are incredibly grateful for all the love and support you have all sent our way to help us through. We couldn't have done it without all of you and there just simply aren't words enough to say thank you.

And - big cheers for Oscar. We are so proud of him. He has led us all through this journey with his incredible resilience, fiercly strong will and the ability to find joy in every moment of now. We are also very proud of Auden for being so loving and understanding throughout this time - he is wise beyond his years and has made it easier for me than it could have been.

Children are very resilient, always in the moment, not yet socialised to narrow their minds in any way and vastly intelligent, all-knowing little beings. We adults can learn a lot from them.

More updates soon...

Saturday, February 5, 2011

Another hospital stay

Oscar was vomiting relentlessly on Thursday so I headed into Emergency with him at about 7pm. He then spiked a temperature so we were in for the minimum 48 hours while they tested his blood for cultures and gave him fluids and antibiotics. His haemoglobin had also dropped and he needed a blood transfusion. Definitely made the right call taking him in.

There were no beds so we ended up spending about 18 hours in emergency. There are no facilities there and we were just in an isolation room without a bed to sleep on. It wasn't too bad though - I climbed up into Oscar's cot and slept as best I could cramped in with my feet sticking out through the bars. There was an eight and a half hour wait time in emergency (which is rare) and a lot of cranky people. We were tucked away in our little room in the eye of the storm but somehow detached from it. We don't have to wait as they usher us into isolation ASAP so Oscar doesn't pick up any of the germs.

We eventually went up to Variety Ward at 1pm the next day. We had our own room, which was good, but we had Oscar's CD player stolen, which was bad. I had bought a special calming CD with positive affirmations and nice sounds for him which he loved and it went with the player. I know the cleaner took it, I know when she took it and how she took it and her and her friend have a good scheme there. It's a shame the hospital care so little to find out what they are up to. I did tell the cleaner I know she took it and she just shrugged, as if to say, "yeah, but there's nothing you can do about it." The nurses told me it happens a lot and to just let security know. Security said to report it to the police as there is nothing the hospital can do. How about some security measures around how many cleaners enter your room, accountability for where they are and what they do?

Arg, it makes you lose faith in humanity. Still, if someone is stealing from a sick kid they must be very desperate indeed. Maybe they need the calming CD more than we do.

We arrived home Sunday. Oscar had completed his blood transfusion and the cultures were negative and as he hadn't had any more temps wo we were allowed home. Yay! Back to clinic Tuesday when he may need some platelets. He has two more nights of intense chemo and the Dr's say his bloods will take a big hit again this week. They expect him to be more his full healthy self in about 3-4 weeks. Then we start maintanence for 18 months. More about that later.

Thanks to everyone who keeps checking in on us and keeping us in your thoughts.

Wednesday, February 2, 2011

Update on clinic and brother love

Oscar had his lumber puncture today and he is in the middle of the last two weeks of intensive chemo treatment. He was listless and wouldn't drink his bottle tonight and had a temperature of 37.8 so I will be checking him two hourly tonight. The only time he has ever refused his bottle is when he had mucositis down his digestive tract - I am really hoping its not that again. Send him some healing thoughts, cross your fingers or whatever you can for him.

He was an absolute trooper in clinic today. When I took him into the treatment room to have his anesthetic the nurse said to him, "Hi Oscar, you want to come look at the fish". They have fish in a big fish tank there to distract the kids from whatever treatment they are about to endure. Oscar responded very clearly, "No thank you. I go home see brother." It made them laugh and the nurse said to the other people in the room, "No point trying to trick this one, he's smarter than all of us put together". She knows him well and always comments on how clever he is. Another nurse chimed in to say, "He is a phenomenal little boy. Always smiling no matter what terrible thing we do to him".

Yep, he sure is. Puts us all to shame and shows us how it should be done.

It was also interesting in clinic today as the Cure Our Kids representative, Sandy, was talking to the mums about a new booklet they have produced as a guide to family and friends on how they can help the parents and siblings of children with cancer. They have put this book together because almost all the mums have said that after diagnosis they are too shocked and confused to know what to say when people ask them how they can help and that this confusion continues through exhaustion and lack of sleep. One of the mum's who had finished the treatment cycles and was there for a check up said it is only now months later that she has been able to think of things people could have done to help. Every mum there admitted they had told people there was nothing they could do to help because they just couldn't think properly.

It's just impossible to describe how your brain functions and how simple, practical things are beyond you at many times throughout this process. I myself have had people openly ridicule me for not asking for more help, which only adds to the feeling of anguish that you are experiencing. How anyone can criticise you when you are in this situation is beyond comprehension to me but it is heartening to know that this is the same for other mums in my situation.

So if you are reading this and you have recently been diagnosed please ask about the booklet. It has great suggestions ranging from the obvious, like cooking, to mowing the lawn, doing the washing, taking some food into hospital as a treat and so on. It is always the little things that make the big difference.

Thanks to everyone who has been able to help in any way despite my inability to guide you in the right direction. Thanks to everyone who reads this blogs and keeps us in their thoughts. Again, it is these little things that make all the difference.

Finally, Auden had a special week this week as he started Pre-School. It is great for him to have some fun with friends and more normal activities to do. He loves it but is very, very tired and his only complaint is, "Why can't brother come to Pre School?"

Ah, brother love......