Saturday, 26 November 2011

controversial: to die or not to die!!!

Well a couple of glasses of wine in I can perhaps broach a topic that I dare not broach with most people most of the time!!!
I do not want my gorgeous Harry to die, I really, really do not, but sometimes I think of the enormity of the process to try and kill his neuroblastoma and I think about the impact on our family and what if we do not  survive to be a family unit at the end of this? My little Callum he has the right to access to both his parents too. But currently and for the current future we are split trying to meet the needs of both our boys.
Also if all the treatment is in vain, yes we do go there, we have both had thoughts of the inevitable, well I think most parents do. To let Harry die now, well I think social services would intervene and a best interest decision made and currently there is the option of treatment, although survival isn't the best odds compared to other cancers, but I think a best interest decision would say yes to treatment and that is the band wagon we are on.
So yes Harry is having good days, but next week he is expected to dip again. this rollercoaster is going to be with us for months. Then I read on an internet site that if Harry survives then he has a 66% chance of having problems in the future in 20 -30 years time. though by the time Hary is 20 - 30 I am sure mediacl science will have advanced yet again. Hearing loss a typical side effect then I read so is a learning disability. My beautiful, bright Harry who prior to this disease, I believe had the capabilities to do anything in life, well the consequences to treatment are not worth giving much thought to. However, they are there.
Medical science is fantastic and without it Harry would not have a hope in hell.
However, all medical science has its possible side effects. Also, what if we endure the next year of splitting ourselves in two for the cancer to come back, or as I read can come back in the form of a different cancer. well i have no idea how we would cope.
My mother met someone on the ward today whom said they were saving up for treatment in America and told her to start saving!!!! I am not sure, I do believe as said before that anything happening in the world that is a trial or in any way legitimate we would have access to.
Oh and what price would you put on your child's life? A funny statement, but what if you remortgaged and it did not work and you are left with a huge debt and trying to keep the rest of your family goimg. A dark place to go I know, but we will see what happens.
I did meet someone the other day, whom 18 month old had spent the last 8 months almost solely in hospital. It seemed the situation had been a huge strain as expected on the rest of the family.
Though to let Harry die would be a very painful process without trying the treatments on offer. It does seem that that he has improved following his initial chemo treatment.
The place we were in a week ago, was quite dark, cos although at the time none of us actually said to the other how we felt. On recent discussions we were all of the opinion that Harry was very much slipping through our fingers. Thus the chemo treatment started and with that, he has had some good days this week. He has smiled, played and been able to enjoy life a bit. He has noticed his scar on his tummy and the questions then tumble out as to what it is, how thay opened him up etc.
So, we are grateful to medical science for keeping Harry going, but at the same time scared of the consequences of the treatment and where will we be this time next year?
As said hope will be the word for 2012 and hopefully Harry will be at the Whartons schools with his friends, playing and learning as any old 5 year old should be.

1 comment:

  1. You are a wise and courageous woman, these are dark and desperately difficult places to explore and people may tell you not to go there - don't listen do whatever feels ok for you. Thinking of you x