No More Visitors
Hi everyone,
Emily is much the same but more lethargic each day. Everything is being well managed at home pain wise. She is still on oral meds though may need to go to a morphine pump if taking pills becomes a problem. Just trying to get through each day. If I don’t return phone calls, answer the phone or reply to texts it is because I am either with the nurses (sometimes twice a day), sorting medicines, tending to Emily, feeding Alex, chasing a toddler around or trying to keep things normal for my kids. Due to the volume of phone calls, texts etc I may not be able to respond. Please don’t take it personally, I’m just beyond busy at the moment (that is the understatement of the year).
We’re feeling very overwhelmed as Emily’s health declines day by day and just need to keep calm and carry on. We’re enjoying our time with Emily and just having close family around at this time. Emily isn’t well enough for visitors any more and needs a low stimulus environment. She watches DVD’s and drifts in and out of sleep these days.
It is our time with Emily now. Rest assured at this stage she is pain free and settled. We will update in a few days.
Kath
Nutty
October 19, 2012 @ 8:30 pm
Kia kaha to all of you from all of us
FNJATM xox
Leah
October 19, 2012 @ 11:37 am
I stumbled across the blog over a year ago. I have never posted a comment as I was never quite sure what to write, but I just wanted to say that Cath, you are a brave courageous woman. I can;t even begin to imagine the pain your family is in. I check your blog daily and think of you all often. Your Emily has touched the lives of many, and although Ive never met her, and we are half a world away, she has touched my life. Will continue to keep your family in my thoughts and prayers,
Leah
Gaz&Ruth
October 18, 2012 @ 9:37 pm
Thinking of you all
Gaz&Ruth
Catherine Davidson
October 18, 2012 @ 6:53 pm
Hi Katherine, love and kisses to Emily and her amazing mum who is doing sooo well. Love from Catherine,Rachael and Sasha xxxx
Suzanne Oughton
October 18, 2012 @ 5:59 pm
Our thoughts and prayers and all our love are with you all at this time, both to you Kath and Emily and all your beautiful Family.
I know I think of you and Emily every day Kath, and my heart breaks for you all.
Treasure the moments you can while you have them.
Love and thoughts to you, Suzie xoxo
Telly & Cameron Power
October 18, 2012 @ 2:18 pm
Kath & family
I am so sorry to hear things are getting worse for Emily. My love and thoughts are with you all at this time. Emily is a brave beautiful little girl xoxo
We think of you & your family often & admire your strength.
xoxoxo
jo knighton and family
October 18, 2012 @ 11:55 am
just heartbreaking….thinking of you and your amazing family xxoxxo
The Sindall's
October 18, 2012 @ 9:52 am
You are all in very much in our thoughts. Stay strong xx
Tina
October 18, 2012 @ 5:15 am
I have only met Emily a few times and more so when she was a wee little baby, but throughout this blog ever since Emily was diagnosed i feel that i have known Emily and her family even more. Nobody should go through this terrible disease, especially a young child and it makes you think how precious life is. Hope the precious time you spend with Emily is enjoyable. It must be difficult juggling everything, especially with a new baby. Hope Alex is thriving. Glad to hear that Emily is pain free. xx
Roydhouse family
October 17, 2012 @ 10:02 pm
Kath & Gary you are amazing inspiring people. I think everyone who reads this blog just wishes with all their hearts that they could change this for you and for Emily. Know that there are so so many people out there that think of you every single day.
With much love…
patricia luff
October 17, 2012 @ 8:54 pm
sending hugs to you all words just dont seem right thinking of you all
Clark's Mum
October 17, 2012 @ 8:35 pm
Sending you strength and love. Overwhelmed? I can’t begin to imagine! No one should have to go through this. Xxx
Vanessa McKenzie
October 17, 2012 @ 7:41 pm
Thinking of you all everyday. My heart breaks for you everyday. Emily is a girl to be proud of. Love and hugs.
Lusia
October 17, 2012 @ 7:04 pm
Just a hug- it’s all I have.
Cherish each and every moment with your darling girl…
With love
~Tanishas Mum~
Annalise Olsen
October 17, 2012 @ 6:44 pm
Just heartbreaking for you all. All my love xxx
The Watsons
October 17, 2012 @ 6:27 pm
There’s nothing we can say – there are simply no words. We continue to be here for you, whatever you need; all you need to do is ask. We keep you all in our thoughts every day.
The Watsons
xxxx
tracey millard
October 17, 2012 @ 6:22 pm
Thinking of you all everyday,continue doing things that you and Gary feel right for Emily and your family.love to you all.
Tracey Millard
Hilary Pheloung
October 17, 2012 @ 5:46 pm
Thinking of you all, and there really are no words. What a cruel cruel world we live in. My heart is with you. Much much love xx
Kim Astall
October 17, 2012 @ 4:41 pm
Thinking of you and your family over the next few quiet times. You’ll know that Jack may be drawing parallels with his friend Connor- give him an extra hug from me.
If you need an extra body to maintain ‘normal’ events, Keas etc, please call/shout/yell!
Think a lot of us on here would have yelled for NZ by now.
Peace and Harmony
Lots of love
XXxxxxx
Vanessa Clark
October 17, 2012 @ 4:31 pm
Kath, Gary and kids….
so sorry, it’s just unbelievable that this is happening. I cannot imagine the strength you all will be needing at this time. I’m so sorry this is happening to Emily. I hope that people take your requests and give you all space and time with Emily and Emily time with her family.
so much love sending your way
xxx
Ness
Catherine
October 17, 2012 @ 4:29 pm
My heart aches with what you are going through and having to watch. treasure your time with Emily, such a gorgeous young girl. we will take good care of Jack at Keas and are prepared to do whatever it is that you need.
thinking of you all xxxx
Casey
October 17, 2012 @ 3:37 pm
Oh Kath this is just heartbreaking. There’s not a single day that dosnt go by that I don’t think about Emily, you and the rest if the family xxx life really isn’t fair. My heart is with you guys always xxxx
KATHY
October 17, 2012 @ 3:14 pm
Katherine and Wooddy,
Our hearts are with you, the hardest thing you will ever do in life is to say goodbye to one of your children .
Emily has travelled a very hard journey but amongst
this journey she has had some memorable moments with you both…….above all you loved her with your souls.
Poor wee Emily such a brave girl she has been through all this, it shouldnt have happened to such a lovely child, life hasnt been fair or just.
Love to you both such brave parents.
The kesselers XXXX
Anita Hoffman
October 17, 2012 @ 3:05 pm
I am so sorry to hear this news. You are courageously generous for sharing your family’s journey with all of us, and I continue honor that choice by not forgetting to hold you all up in prayer during this precious and difficult time.
Paula Knowles
October 17, 2012 @ 3:03 pm
It is your time with your beautiful girl. We have such wonderful memories and photos. We are ever so grateful to you for allowing us to take her away and being invited to her birthday. No words can express how lucky we have been to know all of you. We have had fantastic times together that we will cherish forever and ever. Our love is with you always and will always be.
Friendship is like a chain, regard us as a link.
The Knowles’ xxxx
Chrissie Wooddin
October 17, 2012 @ 2:51 pm
Every step TJ, every heartbreaking step I’m with you :(
Love you all, as always
aunty x x
Sharlene, Neil and Leo
October 17, 2012 @ 2:49 pm
You guys are amazing!!! So much to juggle. I’m sure you are treasuring every, extra moment as much as you can with your beautiful family. Love as always xxx
Lyndy Prendergast
October 17, 2012 @ 2:18 pm
Hey guys
There are no words, enjoy this time with Em as much as you can, thinking of you guys always oxoxoxox
Love The Prendergasts