Sunday 16 September, 2012
Hi everyone,
The last few days for Emily have been really up and down. Friday was terrible. She was in loads of pain, sweating profusely, had three sleeps throughout the day and barely ate one thing. She was seen by district nurses and her morphine doses have been increased should we need to give a higher dose (we haven’t had to yet). Emily has developed bruising and swelling on her right eye lid. This is likely a result of tumor activity in the bone above her right eye. It looks terrible :( Another reason for the bruising is likely to be due to the fact that the cancer in the bone marrow is inhibiting the new development of platelets. Low platelets = bruising easily. The cancer in her bone marrow will also be inhibiting the production of red blood cells. Red blood cells carry oxygen around the body so as these diminish she will become more and more lethargic. Sometimes understanding the physiological aspects of this disease is a curse. But then again an understanding of it helps me to process what is happening, if that makes sense? Either way this disease is cruel for everyone involved.
So… Friday was terrible …..then on Saturday… she woke up a different child! She was animated, pain free, ate breakfast and had a settled day with not one complaint?! This is such a fickle disease.. hence why we cannot plan one single thing more than a few hours in advance. Who knows what tomorrow will bring?
Although Emily is a half glass full child generally, right now she is feeling a bit ripped off with life, and I can’t say I blame her. All she wants to do is go to school and be a “normal” kid.
I am a grumpy cancer Mum today but as always I will put on my poker face and be strong around Emily like I have tried to be for the last 3 years. It is exhausting, but worth it to keep her stress levels to a minimum.
P.S – 20 days til baby’s due date – could be another reason why I am feeling a bit grumpy (curse those hormones ; ) ).
Come on baby number 5 – we all want to meet you! :)
Kath
Lusia
September 18, 2012 @ 8:50 pm
Dear beautiful family
It’s such a tough journey, I wish I could make it easier for you. Poor Emily – as we know this is exceptionally hard for us as adults you just can’t imagine what it must be like for our precious ones. Tanisha found this time very tough, she just wanted to be like all her friends but was unable to. I was and still am amazed by her strength of character and the way she coped. Sometimes I wonder if like me she was was a very good actor – like you say ‘poker face’.
Kath, you have every right to be angry – everything is out of your control – this hideous disease takes so much from from us. The emotional journey is just as tough as the physical, harder again for you with baby hormones as well. I hope you are well baby-wise and as always send all of my love and strength to you and your darling family – you will need it all.
Love ~Tanishas Mum~
Lisa Martin
September 17, 2012 @ 11:56 pm
Hi Kath & Gary,
I had the privilege of meeting Emily for the first time last Sunday when she came with Gary to pick Charlotte up from Amelia’s birthday party.. proud of her beautiful nails done at her birthday party the day before :) I had heard a little bit of Emily’s story but never realised the connection. I have since read your entire blog and wow… I take my hat off to you two.. what a tough road, and what tough decisions you two have made for your very precious family… xxx I know there’s not much that any of us can do.. even though we would like to move mountains and perform miracles for you. Amelia would LOVE to have Charlotte over to play ANY time! Please don’t hesitate to ask.. anytime if Charlotte would like to :)
Wendy Booth
September 17, 2012 @ 10:38 pm
Hi guys
Jaime rang today and spoke to Em, and she was really quiet when she got off the phone- reflective I think is the word I am looking for- Em had said she was too sore too move and her Dad had to answer the phone for her. I think Jaime is finally getting it as to just how sick Em is. It breaks my heart constantly, but all I can hope is that Jaimes friendship helps Em in some small way over the next period. Their friendship is one of those special ones and Em is a very special young frined to all of us in the Booth family as I know Jaime is to the Wooddins. Life is just cruel…..
Leanne Jones (Lachie's Mum)
September 17, 2012 @ 1:06 pm
Great to see you guys out with Jack yesterday.
Life is unpredictable and hard. Some times you feel like you are on the inside looking out and everyone is getting on with their lives.
You are truly amazing parents and as you are lucky to have Emily bless you life she is equally lucky to have a wonderful family, one that will always remember her and alway cherish the time that she was with them.
Bring on your beautiful baby to your lives, there lies the miracle living and life.
Take care
Lee
Kim Astall
September 17, 2012 @ 9:00 am
Too true – you have the right to be VERY grumpy cancer mum! Take out some of the frustration on those pillows when you’re making the bed! A great punching session will certainly get some endorphins flowing round your body, which will then need to rest up as YOU’LL be the one sweating (but not hurting, don’t over-do it!), so time for a movie!
I am constantly amazed by the inner strength that you and Gary have, fuelled by your love for each other and your family. To be honest, that’s what counts. Emily knows she is loved and, although this cruel disease is robbing her of some childhood fun, like school etc, be proud that you’ve given her more love in these 9 years than some children get their whole lives. Remember quality is often more important than quantity. Sadly, we can’t choose which to take, but we can live by the choices we make. Thank you for choosing to share with us the ‘warts and all’ story of this journey.
Hope Bump isn’t too wriggly so you can get some rest these next few weeks (rocket countdown 19, 18, 17…!).
Love and hugs to all your beautiful family.
XXxxxx*
Kirsty Bush
September 16, 2012 @ 10:36 pm
Kath you, Emily & your family are amazing. I can’t believe you are having another gorgeous bubba. Hang in there sister! I hope he/she is a super easy bubba. I’m knackered with two healthy kids so think you are the super trophy wife (& tell Garry, I bet he’d second that!). Love & hugs to Em & you all xxx
KATHY
September 16, 2012 @ 10:21 pm
Find that inner peace…. go there when all else seems in vain, such a cruel thing for each and every one of you to go through, no wonder you have to find the inner strength as well just to get through each day .
Emily didnt deserve this she must feel so alone sometimes even though she has lots of friends around her.
Just love her as you have always done, she is getting her inner strength from you, Gary and rest of family, and may she be pain free just to enjoy living and looking forward to the new bubba soon.
Love The Kesselers
Hilary
September 16, 2012 @ 7:33 pm
Kath you guys are just super human. You really are. I cry reading your messages and it is so cruel that you have to write them. The honesty in your words …. it is all too unfair and cruel. I never know what to say. Ive sat here many a time and tried to write something. It never seems right. But wanted to just let you know that I think about you many times every single day. Emily is so precious and she is lucky to have such a wonderful family around her. She is just a shining star, as are you. Your strength inspires me and I am in awe constantly of how courageous and positive you all have managed to stay. And by all means have a grumpy cancer day – you are more than entitled to it. Hang in there, as I know you will. We are all very much thinking of you. xxx Hils xxx
Taylor Family
September 16, 2012 @ 5:47 pm
It must be so hard to stay as strong as you are Kath. But you truely are amazing and Emily is so lucky that you are her Mum because right now she needs someone awesome like you.
Melissa xoxox
Kylie Campion
September 16, 2012 @ 4:35 pm
Hey guys thinking of you all lots and lots xoxox
Julia
September 16, 2012 @ 4:25 pm
Man I think you guys deserve to be angry cancer parents. Baby on the way or not. I think knowing is good as at least you can let Em know if she asks. You guys are true super Heros to all who know you and we all wish we knew a way to stop what you are going through!
Rachael
September 16, 2012 @ 4:09 pm
Hi Kath and Gary
I see all of the comments about how strong you both are, and I just wanted to say that I echo every single one of these comments. I think that you both are amazing people and it’s great that you are able to use this blog to open up and say what you want to say. Don’t hide your feelings as I think that the only thing we can do to support you is read your thoughts in here and offer silent prayers throughout the days and reiterate to you guys constantly on the amazing job you are doing with Emily, Jack, Charlotte and Luke.
Rachael xx
Annalise Olsen
September 16, 2012 @ 4:01 pm
Kath, as always you amaze me with your strength. You truly inspire me. I think about you guys every day and can’t help feeling how unfair it all is. No wonder Emily is so strong and courageous, look at her beautiful mum and family. Lots of love xxxxxx your never far from my thoughts xxxxxxx