Monday, 8 October 2012

Stuck in the middle

After many calls last night to answering machines and emails back and forth I finally got hold of Dr Goldman this morning.
I had a long chat with him, it is always nice to hear his voice and what he has to say. Unfortunately though we are no nearer to a decision than we were before. I think I was just hoping Dr Goldman would have cleared it all up for me and told me which way to go. But he can't and I know that, but i will always wish for that miracle. It's very difficult as a parent that when you go to the people that are meant to have the answers and they don't, then where do you go from there? We have to make a decision on treatment for our child with no medical background at all, as we know the answer as well as the people who do have a medical background and that is, there is no right answer.
If we go back we risk his life again or hope that Nick is right and Jayden will more than likely be fine or we opt out now and say enough is enough????
What dr Goldman did say is that we could never regret our decision if we chose to do two because no doctor can tell us that three is better as no one knows. It would be entirely different if they said three would fix him and we said no. He's right but why then do I still feel so torn. A huge part of me does not want to go back but is that just because I can't stand to witness my son being so sick again or is it indeed my gut instinct that says he's had enough?
I don't know.
I want to be able to say this is it and stand firm and positive behind that decision and be fully confident it's the right one but I can't. The doctors can't and they're are meant to be the specialist so how can I? It's shit. I want so much for it to be over but I know it never truly will. I know no matter how hard I wish for it to be done, it won't be. There will never be an end to this. The treatment maybe, eventually but not the agonising pain of the thought of losing my son.
I cherish every moment I have with him, every smile he gives me and laugh I hear from his mouth for I know one day it may be his last.
I wish so much that I could fix it for him, that's my job. And I wish so much I knew the answers to the questions I want so desperately answered. But there is none.
I'm stuck in the middle and wish that some defining moment or information could be placed in front of me to tell me which way to go, I want to be making the right decision for my son as its his life we are talking about but I don't know what it is.
He gets his MRI on Thursday and that will let us know if any tumour has grown back. I'm hoping with all my might that it hasn't but other than that there's nothing I can do. I only have hope and I so wish it were enough.

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  1. I have been following your journey on here ever since it began and I just wanted to remind you what a beautiful, caring, strong and inspiring mother you are.Not matter what you decide to do, trust your instinct and stick with it. Unfortunately in a situation like these you can't simply weigh up the pro's and con's. One thing you could keep in mind is if you decide two cycles is enough, make sure you accept your decision and don't let anyone make you feel guilty about not doing the third because ultimately its your little boy and as his mother, you know him best. If you decide to go ahead and do the third cycle, again, don't let people make you feel like you did the wrong thing because you know Jayden best, keep reminding yourself you are doing it because you want Jayden to beat those odds, even though they are not favourable, Jayden can be a miracle and you got to just keep fighting for that. If the MRI show's that the tumor is growing, I can't tell you not to lose hope but I can encourage you to not lose faith that Jayden will continue fighting.... don't despair, sometimes things have to get worse before they get better. Perhaps if that is the case, it could help the decision to do the third cycle. But I am hoping and praying that the tumor has not grown back and that the treatment is doing it's job. Leisl, don't forget to look after yourself too. I have never read about such a courageous mother, Jayden is a very lucky little boy. And no doubt he gets his courage from you, too!
    Sending you lots and lots of strength, hope and prayers for you, your family and of-course little Jayden the warrior xxx

  2. Good luck with Jayden's scan today. I'll have everything crossed for you all. You're doing an amazing job throughout this wretched experience. I hope one day soon you'll be able to enjoy your gorgeous boys big cheeky smile without feeling the pain behind it, and be able to watch all 3 of your munchkins tearing about together without a care. All you can do now is hang on to survive - I pray one day soon you'll be able to actually live again xxx

  3. Thinking of you all for tomorrow. I hope with all my being that Jaydens results are positive x