Monday, 12 November 2012


Jayden's still vomiting in the morning and its just become the norm now. We just wait with a bucket after he's had a milk and out it comes. This morning I was near the sink with him in my arms and that became the target. Far better than the couch or floor or down his pjs. He's in good spirits and as yet not vomited any other time of the day or night. I have no idea why, neither do the doctors but we are all hoping its NOT tumour related. But no body knows for sure. I'm trying not to worry about is as that serves no purpose at all however, very difficult not too.

He's not due another MRI till after Xmas and in some ways I feel like I should ask for one before. I just don't know. Do I really want to know or would I rather just hope and pray its not? I just want to enjoy this time so much and wish I didn't have to worry about it, not ever. However I am thinking if this keeps going we need to get one so We can all at least breath for a little while.

It has been so nice having him without a Broviac and we are all starting to feel like a little normality is back in our lives. I know it's not ever going to be the same no matter how hard I wish it were but I have to be happy for what we have right now. all five of us under one roof, no tubes or lines, and that is a hell of a lot better than it was.

I'm laying next to him now and he's sound asleep, he's had a big day with no daytime nap. He fell asleep easily because he was so exhausted.
He hasn't had much to eat today and we have been having troubles getting him to eat anything other than yogurt or milk, it seems to be his staple diet. He eats the odd banana and capsicum but other than that its just dairy, and egg. Which is worrying to us when we keep reading that the two worst things for cancer are dairy products and sugar? We keep pursuing other options but he's pretty determined to get his yogurt and milk and I for one have become a super pansy parent to him now and he's completely and utterly spoiled in every way. How can I not spoil him. i just want to wrap him up and cuddle him all day and it's impossible not to want him to always be happy. Of course we do draw the line on treats and junk food but yogurt? Difficult.

Jayden and I visited a wonderful friend this morning for a cuppa Which was really nice. Getting out again has been something I've needed to do. She helped me to understand some of the troubles I'm having with luke and shes just an amazing support. I love this woman.
often my husband just isn't the one i can talk to, and although thats sad sometimes its just men and women i think.
Jayden played beautifully with all the toys she had there while we chatted. He really is a wonderful kid, always has been. Easy baby, well compared to my other two anyway. Always easy going and never got really upset. He was always easily amused and just so laid back. Very social. Watching him then after all he's been through never ceases to amaze me. He took it all and just kept going and now he's sitting happily playing with toys. It's so hard to accept that one day I will not have the pleasure of watching him grow and achieve. His big brown eyes on the face of a man I will never see. He would make such a handsome man too, I just know it. Would have loads of girlfriends, a real ladies man.
What I wouldn't give to have him beat those crappy odds. 10%? What is that anyway? Its just crap, that's what it is.

I try not to think about it, but its there. When I wake at night, its there. It stops me from sleeping and it just doesn't go away.
I'm tired now but I know sleep doesn't come as easily as i would like it to. But I always look forward to snuggling up to my little man.

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1 comment:

  1. Although there's no way of knowing without a scan, seems to me that if the vomiting were tumour-related then you would very quickly see an increase in symptoms and issues. I always have to remind myself of that, that in Gav's case, the pain and vomiting increased rapidly over a very short period. If it continues, and continues to worry you, I would request a scan just to set your mind at ease. But I am NOT in any way suggesting that I think it's tumour-related, sounds like Jayden is doing great, eating, playing, happy, and line-free!
    As for eating... ugh, I can relate to that struggle. You want them to eat healthily, but seems they only want carbs and dairy. When Gav started eating again, he loved yoghurt too, so we stopped giving him sugary kids yoghurt and went for a plain, Greek yoghurt instead. With berries and honey.
    I know how you feel about the odds, we all do, but don't forget that the 10% is a ten-year old statistic, and doesn't hold true for the AT/RT kids today. I always envision myself dancing with Gavin on his wedding day!
    I believe that Jayden will be one of the long-term survivors. I am praying for him!
    Hugs, Erica