Wednesday 9 May, 2012
Hi everyone,
Had the meeting with the palliative care nursing team last week which was very difficult but the staff are just amazing and I have so much trust in them.
It has been decided that in order to check disease progression we will just provide a sample of Emily’s urine. Neuroblastoma tumors excrete a hormone called VMA that is present in the urine. The more tumor activity – the higher the amount of hormone in the urine. This is the least invasive of procedures and doesn’t require hospital visits, scans etc. A sample will probably be tested over the next few weeks or so. Kind of dreading that to be honest. Ignorance is bliss sometimes.
In terms of cancer symptoms Emily doesn’t seem to be having any pain anywhere at the moment which is great. She is however recovering from ten days of illness. A tummy bug, followed by a head cold, followed by a kidney infection. She is much better now that her course of antibiotics is taking effect and is even at school today!
In terms of low dose chemo, apparently the dose is so low that the side effects will be minimal and she is unlikely to lose her hair. We won’t be commencing that until symptoms appear. The chemo will just help to slow the progression of the disease down and hopefully give her more time to have more awesome childhood experiences.
For now she is a happy kid doing normal happy things. She is blissfully unaware of the magnitude of the situation and is just getting on with her life.
Kath and Gary
Rachael Morris
May 16, 2012 @ 9:09 am
We are thinking of you constantly Wooddin Family, the words from everyone else that have left comments in this blog are echoed by us as well.
The Morris/Greig Family
Clatworthy family
May 13, 2012 @ 8:06 pm
We are constantly reading your blog and thinking of you all at this tough time. Our love and prayers are with you !!
Annalise Olsen
May 11, 2012 @ 9:31 pm
You are an incredible family, you are always in my thoughts xx
Tessa Murdoch
May 11, 2012 @ 8:09 pm
Hey all my thoughts are with you all!!! Hope all the tests go well. Hope you have fun in Kaikora in the weekend :) have fun!!! xxx
Anna Elders
May 11, 2012 @ 2:59 pm
We could bottle Emily’s words and if we got adults to take them on board, could solve most of the mental health problems in the world!
That little girl is something – you two should be so proud she’s a part of you.
Long may our wee guru dance amongst us.
xx Anna
Kim Astall
May 10, 2012 @ 11:35 am
Maybe they’ll have a dip stick like diabetics use to check sugar levels…
Glad to hear Emily’s back to school again. She’ll soon be telling you to take it easy and rest, as Bump grows!
Love and hugs to you all.
Will catch up soon. xx
Tina
May 10, 2012 @ 5:04 am
May it long continue that Emily is free from pain, blissfully unaware of her illness and just being a normal happy kid. Good luck with the sample as this will be less invasive for Emily. X
Kerri
May 9, 2012 @ 9:59 pm
You guys are such an inpiration to all of us. Emily you are an amazing wee girl keep it up. xxxxx
Lisa Ross
May 9, 2012 @ 9:19 pm
Heya all.
Even though I haven’t seen you all for a very long time, I often think of you all and how things are going. I am wishing Emily heaps and heaps of happy, fun and wonderful childhood experinces ahead, as my goodness she deserves them.
Thinking of you all
Lisa
jo knighton and family
May 9, 2012 @ 9:18 pm
great she got to school today!!
love and hugs to you all xx
Amanda Haggie
May 9, 2012 @ 6:55 pm
Hey there gorgeous courageous Wooddin family. Thank you so much for your updates, I think of you often and pleased to hear that Emily is enjoying life and all that she is getting uP to. Your strength and positivity is inspiring xxxx love Amanda, Rei and boys xxx
Catherine
May 9, 2012 @ 4:55 pm
Long may it continue that there is no pain and Emily can be a happy and carefree kid!! bugger about the bugs, so pleased she on the mend. How are you all doing??
Sharlene, Neil and Leo
May 9, 2012 @ 4:28 pm
Thinking of you all everyday. So pleased Emily’s abs are working and she is still enjoying school! Yay for ‘normality and childhood fun.’ Long may they continue.
Love to you all from us three xxx
Taylor Family
May 9, 2012 @ 4:04 pm
Pleased you are feeling better Emily after yucky tummy bug. Aimee is looking forward to catching up with you.
Thinking of you all
Love Melissa,Brian, Nicole and Aimee.
KATHY
May 9, 2012 @ 4:03 pm
May it long stay this way for Emily.
The whole process sounds a better move for her and you
Katherine and Gary.
Glad you have gone back to school too, know you will love that Emily.
With support like you have on board its a plan and one you can leave it in the cupboard till its necessary.
You and Gary are to to be admired for your dedication and love you give to her, none of us can possibly understand the gut wrenching decisions you have to make for the best for Emily. Please take care and may there always be love.
The Kesselers XXXX
Kirsten Parcell
May 9, 2012 @ 2:14 pm
Wishing you guys all the best.
Sending you much love and prayers.