Tuesday 12 September, 2012
Hi Everyone,
Emily turned 9 on Monday and spent the entire day at school at her request. She had wonderful birthday celebrations and was spoilt rotten :). Thank you to all that made it a very special birthday and for all the gifts/cards in the post.
Cancer wise, Emily’s pain is still well managed. She commenced another drug for nerve pain which seems to be making a MASSIVE difference to her leg pain, mobility, eating and general quality of life. Just being able to bath herself again recently (due to the decreased pain) has done so much to boost her morale. No independent 9 year old wants their Mum to bathe them.
Though she is feeling better pain wise, she is still very tired and not up to going to school (her birthday was an exception and she made such a huge effort :) ). She is hoping to go tomorrow for school photos. Fingers crossed that can happen. The 3 lumps (neuroblastoma tumors) on her skull are now starting to give her some minor grief at the moment, so we are not sure where to go with that. It is just one constant challenge after another, and like we have done for the last 3 years we have to roll with the punches and constantly chase and manage the pain.
Em and I are managing lots of rest while the wee ones are at preschool and I am finding this time invaluable for both my physical and mental state of mind, and it seems that Em is too. Thanks to those who are respecting our space at this stressful time. I am due to have our new baby in 24 days (give or take a few days) and Gary will be taking some time off work from there on which will be great for many obvious reasons. We can’t wait to meet our new addition! Jack is especially excited and has been so interested in this pregnancy.
We are appreciating the space we are being given and we will be proactive in organising things for Emily should she be up to it on the day. We literally can’t plan more than a couple of hours in advance. We totally made the most of Emily’s remission and did heaps of exciting things, so if quiet times are all she gets from here on out then we are at peace with that. We get pleasure out of seeing her laughing at a funny DVD these days as laughter really does make you feel better! She loves the English comedian “Miranda” and imitates her very well! Thanks to those of you who took the time to give her heaps of cool experiences and spend quality time with her while she was in remission :). She really has had some awesome experiences in her 9 years and we don’t feel this sudden urge to send her to Disneyland or anything like that just because her life time with us will be un naturally shortened. She is quite happy where she is and told me yesterday that she can’t wait to tell her own kids about her childhood :(. As sad as that is, it has given me peace that we have always made the right choices for her.
Emily will tell me if/when she has the energy to play with friends etc and I will organise it on her/our terms : )
Kath and Gary
Jenna Brown
September 17, 2012 @ 3:21 pm
Emily, It was so nice to see you at school on your birthday! The children loved having you around and they smiled all day because of you!
Take care lovely girl,
Miss Brown
xx
patricia luff
September 14, 2012 @ 3:42 pm
loveand hugs to a beautiful familly love the family photo thoughts are with along this jounery take care you are doing a wonderful job
patricia
Leanne Jones (Lachie's Mum)
September 14, 2012 @ 11:12 am
what a brave girl and family you have. You must be so proud (ofcourse). I love your family photo. Thank you for sharing your life with us.
You are all often in my thoughts.
It is always an exciting time looking forward to a new baby.
Lee
Lusia
September 13, 2012 @ 11:35 pm
Sending all my love and support – my thoughts are with you always
~Tanishas Mum~
Kim Astall
September 13, 2012 @ 8:03 pm
What a lovely family photo!
Kath,I love reading your painfully honest but heartening stories and accounts as you accompany Em on this part of her journey; you are a true CRUSADER and Richie would be proud to have you on his team!
Hope you and Em enjoyed your movie session on Tuesday – Bryony and I watched a very silly film that had us in stitches – the power of laughter is really quite amazing!
I hope you have reserves of energy in case Bump can’t wait to share in the warmth of your family’s love…You and Gary have an army of babysitters/child walkers etc, should you need a little extra help (or just space and time on your own x)!!
Big hugs to you all. Lots of love.
XXxxxx*
Taylor Family
September 12, 2012 @ 9:18 pm
Was so excited when you told me Emily had gone to school for her birthday and to stay the whole day, what a star. I beat it made Sadie’s day as well.
You are all amazing
Love Melissa xoxo
Olivia Rose Hawtin.
September 12, 2012 @ 8:25 pm
Emily..at school, i have written a poem about you..and if you dont remeber me, my father knows you daddy and you’re grandad(: my poem goes like this.
My Hero<3
My Hero may not be strong on the outside..but has a strong heart
My Hero maynot be older than me but she shines over me like a star
(Can't remember this line..)
My Hero is always smiling, even when i know she wants to burst out with tears
My Hero..My Angel..My Rapunzel,xoxoxox
stay strong emily, i know you can pull through(: xxxxxx
Kate
September 12, 2012 @ 8:02 pm
Words can not express what I want to say. Lots and lots of love to a beautiful and special family.
Kate Gardner
Lea ribbon
September 12, 2012 @ 5:45 pm
Tell Emily I love Miranda too!! She makes me laugh! Lots of love to you all <3
Chrissie Wooddin
September 12, 2012 @ 5:14 pm
TJ as we are all aware Em has battled really hard over these last three years on this long hard journey. I would like to tell you I have the top most respect for yourself and Gary for making all the right choices, whilst most of them have been very difficult, you have also respected Em and included her in the decisions she was able to make with you.
You guys are also doing such an awesome job not only with Em but also with Jack, Charlotte, Luke and ??? lol, and to be honest I’m not too sure how you are doing all this with such dignity, you are beautiful parents and I am very proud of you both
love you both so much
aunty x x x
Stevens family
September 12, 2012 @ 4:53 pm
Kate sends Emily a big hug
Sarah H
September 12, 2012 @ 4:32 pm
It’s lovely to hear Emily had a wonderful 9th Birthday with ALL her friends and loved ones – can’t beat that :-)
It’s wonderful now that her pain is well managed, she can have that bit extra independence and mobility to do things herself – as we all know children love doing their own thing! That’s a great, positive step and make her feel so much better!!
I can’t even begin to imagine the choices you have been faced with – you have made them all with Emily’s well being forefront, you can be at peace that it was ALL the right choices for her – incredibly unselfish, amazing, brave and inspirational!! You are amazing parents!
You are truly in my thoughts every day, I check the blog daily to see if their is a new update – I pray for your amazing family daily and for Emily’s pain to stay at bay – for many more days of laughter and happiness to come!
Take care,
Sarah xo
Bathursts
September 12, 2012 @ 3:52 pm
She is one hell of a kid, with amazing parents and siblings. Glad family time continues to be special and some exciting times with new baby due. All the best , u are in our thoughts and prayers.
Marama
September 12, 2012 @ 3:49 pm
Kath, you continue to inspire and amaze me as a mother!! Keep up the fantastic work and enjoy every precious moment, much love xxx
Korina
September 12, 2012 @ 3:44 pm
Kath you write so beautifully, thank you for the updates. I am happy that your wishes are being respected in regards to how you guys are choosing to spending your time.
I am happy to read that she got to school on her birthday, where it sounds like she got showered in love!
All your children are incredibly blessed to have a mum like you, and of course you are blessed to have them.
I know I have said it before but I will say it again, you guys are always in thoughts!
Sending you love.
Korina xo
Shelley
September 12, 2012 @ 3:28 pm
Oh Kath, your strength just continues to amaze me. I read this latest blog and (once again) the tears start to fall. I’m glad that you are both managing to rest and are getting to enjoy some very valuable and memorable times together. Enjoy your beautiful girl and remember we are here if or when u may need us. Abby and I can fly down in a flash. You are all, always in our thoughts and hearts and we are constantly sending you lots of love and hugs. Stay strong – you are doing an incredible job!
Shelley, Alan, Abby and Olivia x x x x
p.s – Abby loves “Miranda” 2!
jo knighton and family
September 12, 2012 @ 2:44 pm
as alaways i am amazed at how strong you come across when reading this blog…what outstanding and beautiful parents em has…and what an amazing child emily is xx
glad em got to school for her birthday and enjoyed the day.
wow…only 24 days till new baby!! take care, rest up you amazing mum xxo
KATHY
September 12, 2012 @ 1:04 pm
If one is lucky a solitary fantasy can transform
one million realities.
So pleased all is at peace in your world Emily.
May it stay that way
Love The Kesselers XXXX