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  1. #351
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    Always thinking of you guys. You are superwoman. 😘😘

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    Hollywood  (08-09-2015)

  3. #352
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    Just checking in to see how DD is coping with this round, this round seems to be better than the first nightmare round.

    The farm sounds amazing and really really something to look forward to!

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    Hollywood  (11-09-2015)

  5. #353
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    She's doing a bit better this time. Her appetite is dropping off, but I suggested at the consultation last week that we have a nasogastric tube put in and they did that on Wednesday when she was under GA getting a lumbar puncture. Last night she refused to eat dinner as well as not eating much for lunch earlier in the day, so we were at least able to give her a high calorie formula feed. I didn't want a repeat of last time when she lost a lot of weight from hardly eating for the best part of two weeks. She dipped below the healthy weight range on the chart and was so skinny.

    She gained a little bit of weight back in the week before this round as she got better so hopefully we can maintain that now. I really feel that not eating contributed to her feeling so sick.

    Anyway so I feel better about this round but if we end up back in hospital after we go home, like last time, then so be it. At least we're on top of the nutrition side of things.

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  7. #354
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    Oh Hollywood I've just caught up, I'm so sorry your DD is going through this, she sounds so brave though! Congrats on the farm, that's so exciting! I really hope each round of chemo gets a little easier.
    I can't imagine how you must be feeling watching her go through this but try and look after yourself too. Hugest hugs xx

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    Hollywood  (11-09-2015)

  9. #355
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    How are you guys going? x x

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    Hollywood  (16-09-2015)

  11. #356
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    Quote Originally Posted by waterlily View Post
    How are you guys going? x x
    She is doing much better than the last round. Partly due to feeling better going into the chemo, and also due to having the nasogastric tube in. Until yesterday afternoon she was doing well with eating, but yesterday evening she refused dinner so I was able to give her a feed of the liquid supplement they've given me. Then this morning again she refused to eat breakfast (mucousitis has set in which means she has ulcers all through her digestive system). She felt heaps better after the feed. I really think that having the feeding tube has kept us out of hospital because she's not getting sick from not eating or drinking. This time last round we were back in hospital on the Wednesday (ie today), so I feel like it's a big achievement to still be at home. In fact here's a pic of her yesterday, out for a walk

    ImageUploadedByThe Bub Hub1442399431.952255.jpg

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  13. #357
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    Gah! I spoke too soon! Her temperature went up to 38° last night so I had to take her to the ED. We will be in for a few days. So disappointed

  14. #358
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    Oh bum I'm sorry to hear that you're back in hospital. It must be such a rollercoaster for you all.
    Sending lots of love to you all and hoping you can bust out of the hospital ASAP xxx

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    Hollywood  (17-09-2015)

  16. #359
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    Oh damn. Hope she improves quickly. Xx

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    Hollywood  (17-09-2015)

  18. #360
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    I've read this thread a few times, but haven't known what to say. You and your daughter are often in my thoughts, trying to send good vibes your way.

    I hope your daughter improves quickly and that you get to take her home again soon. Fingers crossed that future rounds go more smoothly.

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