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
Kylie Campion
August 18, 2012 @ 5:29 pm
Stay strong Em, you are such a strong wee fighter, an inspiration to all. Thinking of you all XOXO
Sally Lamplugh
August 18, 2012 @ 3:55 pm
Thinking of you all… hugs for you all… especially the delightful, beautiful and courageous Emily xx
Catie
August 18, 2012 @ 1:57 pm
Just keep holding on, I am close to crying but so proud of you guys. It might seem like the end, but kids are amazing, and some of the stories I know of where kids make an amzing turn around and beat the cancer are testiment to this.
But whatever the outcome, Emily has done and is doing a fine job at life, and she will ALWAYS be better and stronger than cancer and whatever it does to her and anyone else.
Vanessa McKenzie
August 18, 2012 @ 1:16 pm
Have been watching your blog ever since Emily’s relapse Having come close to losing my wee girl at the very beginning of her treatment I still can’t even begin to imagine the devastation you must be feeling at the moment. I have been amazed by your constant strength and selflessness throughout the year in putting Emily’s wishes first. My thoughts are with you all every day and I’m sending you all my love. Caitlin’s Mum.
Lisa Jackson
August 18, 2012 @ 8:58 am
Speechless… but love to you all, can’t comprehend what sort of head space you are in but if you need absolutely anything please let us know.. xxx, Lisa, Holly and Sam Jackson
Laurie
August 17, 2012 @ 10:35 pm
Courage is not the absence of fear or despair; it is the capacity to continue on despite them, no matter how great or overwhelming they become.
Love to you all
Laurie, Stu, Stevie and Andy xxx
Melissa Curry
August 17, 2012 @ 9:53 pm
Kath – just saw that Emily’s blog was updated while checking FB, read your latest post and just cried for you and your beautiful family. What a terrible world it is sometimes. Sending so much love from my house to yours xxx
Michelle Grant
August 17, 2012 @ 9:11 pm
Kath and Woody, there is really nothing to say except this sucks. You guys are showing such amazing courage and strength during this time – you are my heroes.
Although we knew Emily was going to get sicker it doesn’t make it any easier. I still can’t believe this is happening to one of ‘our’ babies.
We are thinking of you always and sending much love
xxx
Lisa Ross
August 17, 2012 @ 8:46 pm
Well i can not say anything different from what the people above have already said…I am sorry to hear of the pain and the rapid decline in Emily’s health. Thinking of you all…
Lisa xx
Natasha
August 17, 2012 @ 7:39 pm
Sending my love to you all
Lusia
August 17, 2012 @ 6:19 pm
Dear beautiful Emily & your loving family ~ Having already experienced this with my precious girl. I am sending every ounce of my love & strength to you all because at this time you need it more than me. Tanishas Mum xoxoxox
Maloneys
August 17, 2012 @ 5:55 pm
Hey Kath
I’m so pleased you text me to Jack out on Wednesday night. He was awesome. Remember he can come and play or come out with us any time, I know he enjoys it and we enjoy having him. He is hilarious !!! Lots of hugs from us, make sure you do let me know if we can do anything to help. Bridget and the rest of the Maloneys down the road here :)
gareth
August 17, 2012 @ 5:48 pm
Thinking of you all and hoping that the pain can be controlled for Emily.
Gaz & Ruth
Christine Booth
August 17, 2012 @ 4:33 pm
Thinking of you all at this very sad time, such heart breaking news, my heart is crying at such news.
Jess
August 17, 2012 @ 4:28 pm
Love to you all. Thinking of you all time xx
Amanda Haggie
August 17, 2012 @ 3:47 pm
Words escape me…. Such a precious precious wee girl on such a horrendous journey….. All our love to you sparkly wee Em…. Much love Kath and Gary.
Leisa
August 17, 2012 @ 3:32 pm
Guys… really don’t know what to say…… We are thinking of you all so very very much and our love and thoughts are with you all…… If we can do anything at all, please let us know…. love you all xxxx
jo knighton and family
August 17, 2012 @ 2:31 pm
thinking off you all….love the knightons xxo
Rheanna Court
August 17, 2012 @ 2:03 pm
love from the court family, thinking of you all and hoping for the best xx
Annalise Olsen
August 17, 2012 @ 2:00 pm
How heartbreaking to read this, I am so sad that your family has to go through this it just feels so unfair :( I hope that ems pain is controlled quickly and that you have the strength that you need at the moment, sending lots of love and thinking of you x x x
Kate Gardner
August 17, 2012 @ 1:58 pm
Sending all my love to the beautiful Wooddin family. I am thinking of you all. Lots of love Kate XXX
The Schats
August 17, 2012 @ 1:56 pm
Our hearts and thoughts are with you guys. Your doing an amazing job kath x
Helen and Irene
August 17, 2012 @ 1:30 pm
We were so sorry to read the latest news and our thoughts go out to you all. Helen and Irene
Candice
August 17, 2012 @ 12:27 pm
What awful and sad sad news… Lots of love and prayers to you and your family xxxxxxx
Trudi and Craig Squire
August 17, 2012 @ 12:12 pm
This is heartbreaking news but thank you for keeping us all informed and updated. Our thoughts and prayers are with your whole family. May you continue to find the strength you all need at this time. Lots of love, the Squire’s.
Duncan and Sarah Wright
August 17, 2012 @ 12:01 pm
Kath and Woody, this is just the most awful thing a parent could ever go through. Ever since Emily was diagnosed, we have thought of her and your beautiful family every day, praying that this horrid disease was be gone from your lives forever.
Whenever we have read the blog, we have been amazed and totally humbled by the maturity, strength and positivity that Emily has shown, and also both of you as her loving parents. She, and your entire family, are absolutley wonderful. Emily is so loved by so many people all over the world, a testament to the fact she is a beautiful human being with a beautiful family.
We are so sorry that this is happening, and we send you all our love, hope and prayers.
With Love from Duncan, Sarah, Jonathan and Matthew Wright
Humm Family
August 17, 2012 @ 11:25 am
Life is so unfair, praying and thinking of you all.
xxx
KATHY
August 17, 2012 @ 11:04 am
SORRY SORRY SORRY…..Why Why Why
Katherine and Wooddy you have always done your best for her most of all your love.
Life is just so sad sometimes and has no reason at all.
Our thoughts are with you and Sherilyn and Tom.
Always in our hearts
The Kesselers XXXX
Shanda, Clayton and boys
August 17, 2012 @ 10:30 am
Think of you guys every day. Sending lots of hugs to you all. xx
Biunca Berghuis
August 17, 2012 @ 10:21 am
My heart goes out to Emily and your family Kath. I’m all teary as I write this as I cant imagine how horrendous it must be to see your child in pain. Wishing you all the strength in the world my love xxx
Shelley
August 17, 2012 @ 10:17 am
Oh Kath, my heart is breaking as I read this. It is so unfair that Em has to go thru this again. Sending you all big hugs and loads of love. xo xo xo xo
Vic Steffens
August 17, 2012 @ 10:12 am
Kath, I am so sorry to hear of Emily and the pain she is in. Accepting of what she is going through is tough enough, but to see your little girl in so much pain must be heart wrenching. Our thoughts and prayers are with you guys xxx. Take care all of you.
Blair and Toni
August 17, 2012 @ 10:06 am
Thank you for the update. We think of you often and wish we could help. You are an amazing family, stay strong together. Sending all our love, the Millers.
Chrissie Wooddin
August 17, 2012 @ 9:44 am
Love you all
aunty x x
Kathryn
August 17, 2012 @ 9:31 am
Sorry forgot to leave name! Love from the Cobb family xx
Kathryn
August 17, 2012 @ 9:25 am
All our love goes out to you all xxxx Poor Emily it’s just not fair and do hope she’s gets to be pain free xxx
Paula
August 17, 2012 @ 9:18 am
My heart aches for you all. Sending you all love and hugs. Thinking of you xx
Taylor Family
August 17, 2012 @ 8:52 am
There is nothing right about what is happening to this beautiful, intelligent, happy, kind hearted young girl. All our love to you Emily and big hugs even from Poppy.
All our love to the whole family and we are thinking of you all.
Love Melissa, Brian, Nicole and Aimee. xoxoxoxox
Donna Chambers
August 17, 2012 @ 8:23 am
Thinking of you and your family and sending your beautiful Em many many hugs. xxx
Wendy Booth
August 17, 2012 @ 8:14 am
Kath and Gary
I am devastated to read this update. My heart and love goes out to you all. Nothing else I can say, but know our thoughts are with you always
Love Wendy, Greg, Jaime and family
The Watsons
August 17, 2012 @ 8:12 am
Even though we knew this was happening, it’s still heartbreaking to read. Our thoughts are with you all, and we just hope that Em’s pain can be brought under control quickly.
Much love to everyone xx
annie bathurst
August 17, 2012 @ 8:05 am
Our thoughts are always with you all. All our love and hugs especially to Emily from Eliza and Isabaella, Annie and Greg.
Helen & Darren Scott
August 17, 2012 @ 8:04 am
Thinking of you all and sending lots of love & hugs your way xxxxx
Julia
August 17, 2012 @ 7:53 am
This is just so unfair!!!!!! Emily is a awesome kids and you guys are the most amazing family. We are sending you ALL our love and healing thoughts and you are on our mind constantly.
Lots of love Julia and Willow
Alana
August 17, 2012 @ 7:41 am
Lots of love & big hugs to you all xxxx
Lea ribbon
August 17, 2012 @ 7:35 am
So sorry to hear that Emily is in pain and poorly again :( Love and thoughts to you all xxxxx
Rachel Clements
August 17, 2012 @ 7:29 am
Our hearts break for you all – its not right that Emily should have to suffer so and that you all have to go through this! All our love and big hugs to you all
Angela
August 17, 2012 @ 7:28 am
Anything we can do to help please let us know. We’re thinking of you and praying for Emily xxx
Deanne Holland
August 17, 2012 @ 7:20 am
Endless buckets of love my friend! Always in my thoughts xx
Tina
August 17, 2012 @ 4:38 am
I am so so sorry to hear this and feel for Emily going through all this pain. It’s just not fair. My love to her and everyone who is caring for her. xx