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......