17 June 2011

June 17th

Day 3 of Cytarabine and Paige seems completely oblivious to the fact that she's having Chemo. Her appetite continues and she's drinking enough, can't ask for much more! She's started climbing onto things now and goes on her tippy toes to try and reach things. It's really quite funny to watch her try to reach stuff then of course she can't and gets frustrated. She's also pointing at things and saying something that resembles 'dat', must be the Trini blood.
She seems to be bonding more and more with Sam, it's beautiful to watch them play together now. Of course every time Sam wants attention now he says "mummy I'm not feeling well", and this happens roughly 10-20 times a day.
The second most asked question of us is "how are you coping" and the answer is simply, "we haven't got a choice". Paige doesn't know that she sick and we haven't told her so sssshhhh. Sam's very switched on but I'm not sure how much he understands. So I keep busy with the everyday chores, and Russell goes to work, and we live day by day because every one is so different. It's very helpful that Paige is so active and alert so she gives us that much needed boost to keep going. It's also very reassuring that the medical support and in particular Paige's consultant Mary Morgan is the best in her field in the region. The Piam Brown team  is fantastic, not just with medical support but particularly with moral support as well. The nursing team listens and they try to help with all questions. An e.g was my concern about Paige's eating, Liz, one of the nurses spent an hour giving me ideas of how to deal with simple things like where to sit her, trying various portions snacks etc, and most importantly staying calm and relaxed during meal times. This was despite the fact that she's maintaining her weight and in the 75th percentile for her age. Then I got a call from the nutritionist the next day! Talk about follow through. They also make sure that we always have all the kit that Paige requires, sometimes when I'm leaving the hospital I think that they'll stop me because I have so much stuff !
So in essence we have the unwavering love and support of our family and friends, a qualified and compassionate medical team and of course our beautiful daughter who continues to give us strength and courage by her beautiful smiles and nonchalant approach to her illness.

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