Sunday March 17, 2012
Hi everyone,
I have had a lot of people ask about Emily’s treatment options for the recurrence of the Neuroblastoma to Emily’s jaw. As we all know, unfortunately there are no curative options, given than Emily has had the MAXIMUM amount of everything possible to try and cure this hideous disease. I would like to explain how this is all likely to pan out treatment/response wise.
Basically, in the current circumstances our best option is delivering radiation therapy to the jaw together with effective pain relief/nerve stabilising meds. Another option in this situation is low dose chemo, given orally at home, which may commence earlier rather than later should further disease be picked up at next week’s CT scan. These treatments can produce remissions for on average 4 – 6 months in the setting of relapsed metastatic Neuroblastoma, however inevitably the disease will come back and progress. It just will. A tough pill to swallow : (
Trust me if there was a clinical trial or a new wonder drug that Emily could have then we wouldn’t hesitate to do so, but the fact of the matter is, her body is still recovering from initial treatment so anything of a high dose nature would in itself kill her. We will not let her suffer in any way or be putting her through any unnecessary pain if the outcome will be the same.
Emily is feeling great at the mo and we want to enjoy this time, and we want all her friends and extended family to do so as well.
Time to live life to the max!
Kath
Anna Elders
March 21, 2012 @ 10:26 pm
Hey Plucky
There are many amazing human beings out there that defy the odds, perform ‘super human’ feats and generally blow us all away. You and your family must all fit into that category which is strange as I’m sure families don’t normally come so highly concentrated in ‘great shit’!!
The super human feats and defying the odds that I’m of course talking about now is not what we’re all hoping for as I’m no clairvoyant. It’s referring to this determination and guts, this unrelenting (even when it feels like it does relent e.g. your crying in the shower example) and this marvellous ability to choose to move forward and even ‘live life to the max’ when the natural mental and even physical effects of what you’re going through pushes your mind, body and spirit to do the exact opposite.
You are truelly a ‘wonder family’ and if we could somehow frame your attitudes and abilities, we would have evidence that there is magic within the world for those non-believers.
Kath, for what it’s worth we’re all behind you guys. Don’t ever underestimate your abilities to cope with even the most catastrophic of events and I hope your beliefs allow you to feel that somehow, in some way not currently accessible to us mere humans, there is method to this madness.
Lots of love to you and yours,
Anna Elders (Creed) xxx
annalise
March 20, 2012 @ 12:55 am
Such beautiful pictures, how lovely to see how much em is enjoying life. You are such an amazing family, thinking of you today and everyday x x
Roydhouse family
March 19, 2012 @ 12:58 pm
They are lovely pictures of Emily. Moments to hold on to. As Lyndy says; we are thinking of you every day.
Tina
March 19, 2012 @ 5:21 am
Love the pics of Emily. I think Emily has so much strength and courage in life that that in itself will be an enormous boost to Emily’s treatment. xxx
Lyndy Prendergast
March 18, 2012 @ 8:38 pm
Dear Kath & Family
Tears still flow as i read tonights blog, but to see those happy photos at the bottom of the page just makes ya break into a huge smile, great to see Emily with such a huge smile on her face :) Thinking of you every day… The Prendergasts oxox
LIBBY
March 18, 2012 @ 8:15 pm
Emilys love and life will keep you all strong and smiling (on the outside!). Kath and Gary I have always admired your courage and strength during this bloody awful ride. Please give em a big hug form me and of course those other 3 wonderful kiddies.
Lot of love LIBBY (CDHB HPS) xxx