Saturday, 14 July 2012

MTOP application and no sleep

I was asleep but then woken by the phone and now I cant get back to sleep. Another moment on my own left with my thoughts. Everyone else is asleep, all cozie in their beds. Snoring. I have a family of snorers.
Im worried about stuff I shouldn't be worried about when I already have enough to worry about. If that makes sense? I think I must be the worlds best worrier.
We got an email the other day about the MTOP application saying that they have accepted our application. This should be great news and indeed it is but also brings with it stuff I shouldn't worry about but am.
I'm sure if I was just able to sleep right now everything would seem not so bad tomorrow.
Although that's hard.

Jayden started vomiting again tonight and hasn't been for nearly a week. Makes me nervous. The likelihood of his tumour returning is at its highest in the first six months of his treatment which brings us up to roughly the end of September. That's just crap isn't it? Having a child with a cancer so aggressive it returns within six months of treatment and if not then, the chances of it returning later are only slightly lesser and the longer it doesn't return the better the chances of survival.
I talked to dr goldman on the phone the other day about just that. I asked him what we would do if it returned and his answer was "we don't want it to return". There are trials out there testing new drugs but basically if it returns it's even more shit than this. Hard to beleive.

I watched him today playing and thought about what he makes of all of this. Tohim, this is normal, to him this is life as he knows it. To him he knows no other life. He rarely questions it, he knows it to be no other way. I tried to find comfort in that. In knowing that he has accepted it then he would not feel the sadness or worry that I do for him. I looked at him smiling and laughing with his brother and thought about how happy he is right at that moment. That how good it would be if I could box that up and keep it to give to him in any given moment of sadness that he will feel in the future.
I worry myself senseless that I will one day have to hold him when he is not feeling anything like that at all and I wish that if that day did come I could open that box and he would be that happy little boy forever again.
That time hasn't come and I pray and hope with all my heart it never will. I'm so very scared. More scared than I ever have been in all my life. As it gets closer to returning home I feel myself thinking about it more. Worrying about the future. Stopping myself in thought and trying to remind myself to take one day at a time. How exactly I do that I'm not sure. I fumble through each day holding back the negative thoughts but that's the best that I can do.
I watch other parents with their healthy children whos worries probably consist of what's for dinner tonight or school lunches, maybe work issues, partner issues, whatever and I envy them. I remember when they were my issues and I wish so much they still were.
The sleeping tablet ive taken is now taking affect and I'm going to finish this now. Below are some photos of jayden today, my precious little man.













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1 comment:

  1. Leisl. I cannot take your worry away, not would I. To worry ourselves senseless is our right as mothers, I firmly believe.

    To provide factual options though: Issy, like Jayden, received ACNS-0333 during his first treatment. With his reoccurrence, he's on a revised version of IRS-III. WE DON't want it to return, no no no, but there are options. If possible, please set aside that particular fear.

    We continue to think of Jayden and your family with love and pray for total eradication of his cancer.
    Lori (and Issy)

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