Wednesday, 24 October 2012

hospital visit

Jayden was back in hospital today as he had to get he dressing on his broviac changed. He has to have this done weekly until its removed and as yet we don't know when that will be. They said it should be within the month but I wish it were sooner because while its in there, there is always risk of infection. Apparently though they have to have the same surgeon that put it in take it out so its just a matter of time waiting till that surgeon is available. In the mean time Jayden has to endure a dressing change every week but after everything he has been through I know he can get through that, just as he did today.

He was very chipper when he was in hospital today which surprised us, its as if he knew. Very weird. Happy to follow the nurse into the treatment room and play with the toys. Obviously not happy to have his dressing change and hopefully there wont be too many more to come. But generally happy to be in there. I'm sure children have a sixth sense that we as adults no longer have and he knew nothing really bad was coming.

It was weird for me, being in there and in some ways I felt like a naughty school girl who hasn't completed  her maths homework. I felt as if I was being frowned upon by others however I'm sure it was all in my head.  I think I worry about being judged and I know I shouldn't but its hard not to feel that way. Maybe its just that I'm still struggling with the decision but I think I'm only struggling with it because its not the norm and generally I do the norm like most of us. I don't know but it often keeps me awake at night, tossing and turning, worrying. I think however, no matter what we decided I would be tossing and turning at night, worrying, did we do the right thing? When I think about going back now, I still cant bring myself to do it to him. It would be different if they said to us there's a good chance this is the answer, but they cant.  I don't know if i will ever sleep at night but I hope one day I get some peace from all this worry. I miss just enjoying resting and a good night sleep.

Danny on the other hand is clear as a button about it all and couldn't be happier we decided not too, he has absolutely no regrets whats so ever and if anything wishes he hadn't done number two. I wish I could be as clear as him but in the end I have to remind myself that really we had no choice, as we just couldn't do it. No matter how hard we thought about it, we no longer had the strength.

I think I'm worried more than anything because there's nothing else to do now but wait. I wish I could be actively doing something to help prevent it coming back , medicines, anything. But besides good healthy eating and the obvious other things there doesn't seem to be anything.

I sent a letter to Dr Goldman asking him that very question and I received one back from him today. I want to share it on my blog tonight because I just thought it was beautiful and everyone should know what a wonderful man this man is, I really love him . Hes truly the best Doctor I have ever come across and one of the nicest men I have ever met. This is what he wrote.....
Dear Leisl,
First and foremost, please know in your hearts that
Jayden could never ask for a more loving and caring 
set of parents. No matter what these days bring I 
feel 100% secure in that,  the decisions you made 
were with love and respect for your son.
About the helpless feeling, there is a well, 
known phenomena called "closing the umbrella" 
some estimate up to 50% or more of families feel 
this way. The best way I can describe this is the 
scenario, when I meet a family and they tell me 
how on the last day of chemo they are  going to have 
the world's biggest party, yet when that day comes 
they feel scared and sad. You see as much as we all 
hate  and despise the therapy our loved ones go 
through there is a sense of security that you are 
doing something and when a treatment regimen ends 
the fear of watching and waiting can be overwhelming. 
It would not be wrong to seek out alternative 
therapies like nutritional supplements , antioxidants, 
shark cartilage etc. etc. but none have any 
proven efficacy and would require him to take 
meds something we both know he does not like. 
I would enjoy his healing and watch him flourish.


  1. Wonderful letter - thank you for sharing.

  2. My thoughts & prayers are with Jayden & all of his family. God Bless.