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Old Thu Mar 8, 2012, 04:46 AM
Ellensmom Ellensmom is offline
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Join Date: Dec 2011
Location: Copenhagen, Denmark
Posts: 2
Dear Chris,

I am so very sorry that your daughter is sick and needs to undergo a BMT.
My 4 year old daughter Ellen was diagnosed with MDS in October and is now 14days into her BMT. It is hard on her but somehow she seems to cope through it all. When in pain she is sad and down but as soon as her pain medication is properly adjusted she resurfaces and is able to smile a bit, talk and be a happy little girl for a while. I think this is typical in children. While we - their parents - worry and hurt for them every second they are somehow able to fully live in the moment and be ok in spite of all the hardship. I hope and think this will be true for Kiera as well.

You ask for ideas for your BMT-stay and I will suggest that you bring in a mini-fridge. It might be standard at your hospital but at our hospital - Rigshospitalet in Copenhagen, Denmark - there are no fridges in the isolation rooms. We are so happy we brought one as it turns out Ellen will only drink her water ICE cold:-)

Also Ellen has enjoyed having stories read to her. It is such a soothing thing to do – for a mom as well. We can only touch her through the skin of plastic gloves but somehow reading and sharing stories bring us a bit closer. I realise that Kiera probably does her reading just fine on her own, but when she is low on energy she might enjoy the voice of a parent and a good story to escape into.

I completely agree with all advice given by Evans mom. I have read her and her sons story as well and I was very inspired by her way of becoming her childs advocate and protector. (Thank you Evans mom). If you don’t agree with the staff’s way of doing things don’t hesitate to tell them or ask them to leave. (I have had to)
Getting your own head around the many rules and restrictions of the BMT-Regime is a mouthful, but you will know them in your sleep sooner than you think.

All the best

Freja
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