Thursday 16 August, 2012
Hi everyone,
Over the last couple of days Emily has gone down hill quite dramatically and is now requiring oral Morphine to control her pain. The pain in her legs is so severe she can barely walk. She had this pain at her initial diagnosis in 2010. Emily also found a lump on her head. Again, Emily had a lump on her skull when first diagnosed : ( It is now evident that the Neuroblastoma is what has been causing her “illnesses” over the past 6 weeks or so. She even required some sedation today as the pain was causing her a lot of distress and it took me two hours to get her pain under control. The palliative care team is on board and the main goal at this stage is to get her pain levels controlled so she doesn’t suffer. Once we have built up her morphine levels we may be able to use a Fentanyl patch which sticks to the skin and gives slow release pain relief for up to 72 hours at a time. Emily does not link her pain to cancer, or ever mention that it is cancer.
She is very lethargic and not eating much at all. We will take each day as it comes and just need time to ourselves to get our heads around this dramatic decline in health. We are unable to plan anything as she can be settled one hour and then in excruciating pain the next. We will let people know if/when we need help with things but for now we just need to remain low key and get Emily’s pain sorted. This is such a horrendous journey…
Keep an eye on the blog for further updates.
Kath and Gary
Jo Patterson
August 18, 2012 @ 7:44 pm
Kath & Gary and the gorgeous Wooddin family, we are thinking of you all so much. Words completely escape me as I read of the recent blog.
Kath and Gary you are both incredible, I fully admire the way you both wholeheartedly support Emily in making her decisions for tests and treatments. It must be heart breaking watching Emily go through this horrid journey and extremely tough as a parent wanting to know more results etc but as I say I admire you guys for giving her the autonomy. She is such an amazingly strong, brave and gorgeous girl.
I have just read your next blog and Im so glad that Emilys pain is relieved with pain relief. It bought a smile to me that she has enjoyed catching up with a few friends and family.
Sending you lots of hugs and lovely thoughts
Tom, Jo & William Patterson xxx