no more treatment update part 3

saraht

just wanted to let you all know how lucy has been this week and to say a big thankyou to everyone who has sent messages wishing her all the best. so thankyou to everyone who has been reading my posts about her and thankyou for all the messages. lucy was in a lot of pain at the start of the week even using her wheelchair abit too which she hates doing, then on wednesday no pain and thats how its stayed for the rest of the week! still no news on their decision on what to do with her next but i know their working on it. someone asked me if lucy was on anything to protect her bones from osteoporosis yes she has been on calcichew for a very long time, hope that helps. i just want to say that i hope my posts dont upset anyone or make you worry about your own children more than you do already, lucy has just been very unlucky and it is extremly rare to find a child with the problems lucy has. its hard sometimes i know most probably feel the same but i try not to think why us, why my beautiful daughter. but we have lived with it a long time and what does not kill you makes you stronger or so the saying goes. have a great weekend all of you.

speedalong

Hi Sarah, I'm pleased Lucy has seen some improvement since Wednesday and is having some respite from the pain. Don't apologise for posting - it is people's choice which they read and which they don't. Keep strong. I hope they come up with an acceptable treatment plan for Lucy.

take care,

hugs for you both,

Speedy

anniesmum

Sarah - I agree totally with Speedy - don't feel guilty about posting it is lovely to get the update from you about Lucy and I feel pleased you are all having a little respite from her pain. It must feel relentless for you all. I have a huge respect for your strength and hope you get lots of support at home. Stay strong Sarah and look after yourself.
Keep posting.
Lucy x