Emily's Journey

Hi everyone,

Emily is doing ok. Very tired and sleeping in until 10 or 11am in the mornings lately. This will be due to both the stronger doses of morphine and the disease progression no doubt. She has required further morphine for break through pain a couple of times over the past few days but on the whole the long acting morphine is keeping the pain at bay.

Em is coping well during the day, mostly reading quietly or watching DVDs. Not eating much but drinking well.  Em and I have had some nice one on one time just chilling out over the last couple of days and will continue to have these quiet days to ourselves on the days where the little ones are at preschool. Down the track Gary will no doubt take time off work so he too can do the same. When that will be it is hard to tell. I have no idea how long this will all go on for??

Because Em has been sleeping in, we get the other kids ready for their day then I get all the house work done before she wakes (I don’t over do it I promise, just the necessities). Then I help to bath her, then we just chill for the rest of the day really as we are both exhausted by then! The bath was such an effort for Emily today and she felt very weak and dizzy. The morphine seems to be making her very tearful in the mornings also.

This afternoon Em received some lovely poems, jokes and a super hero story about her :) This made her day. Thank you room 8B3. I would also like to make a special thank you to the owners and staff at the Cat’s Pyjamas Preschool. They have been so accommodating with fitting the wee ones in at any time so Em can get some quiet time and we really appreciate it. Also to those of you who are doing meals and picking up my other kids for various things. THANK YOU. The other kids seem to be coping well with everything and Jack isn’t asking too many questions at this stage. He is kind of used to Emily having lots of time off school.

Also thanks to everyone for giving us the much needed space at this difficult time to focus on Emily (and the other kids) and get our heads around new medications etc, but most of all so we can rest and have our turn with Emily (we shared her a lot over the recent months ;) ). We need this space until further notice and know that you are all thinking of us :) We will filter visitors in when we have the energy.

Catching up with the Palliative Care Nurse tomorrow who will no doubt draw up some more morphine injections for if they are required over the weekend.

Will update again in a few days.

Kath and Gary