Thursday 6 September, 2012
Hi everyone,
Emily’s pain is still well managed at this stage. She has required extra morphine doses for break through pain on a couple of occasions but on the whole she doesn’t complain much. She is a tough cookie. Goodness knows what she is actually putting up with without letting on. Spends most of her days reading ( often cards and things from class mates :) ) or watching TV. Tires very easily and even a trip to the DVD store a couple of days ago wore her out. She is limping a lot and not up to going out much to be honest. We are having lots of quiet happy times at home, though the morphine is still making her quite tearful and a lot of my day is spent reassuring her. It is emotionally exhausting for both her and myself.
I felt the need to tell her yesterday that the pain in her legs was from the Neuroblastoma ( as I am not sure that she believed the Oncologist – or didn’t want to when she was told a few weeks back ). I figured if many kids in the community know that her cancer is back then she should definitely be aware of what is in her body. She kind of shrugged it off to be honest. I guess it is difficult for her to link the pain to cancer when her pain is so well managed this time around with Morphine etc, unlike prior to her intial diagnosis in 2010 where the pain wasn’t managed for 9 weeks because it was assumed the pain was from a virus! One saving grace is this pain relief!! ( The only saving grace :( )
Although we have ensured Emily understands that her cancer is back we have NOT told Emily her prognosis and to be honest we will not be. We just can’t bring ourselves to tell our child such a thing! As I stated in a previous blog I have no problem with what people tell there kids but PLEASE PLEASE be aware that Emily knows nothing more than her cancer is back. I really don’t want anyone telling her about her inevitable prognosis. I feel that this blog is more for adults eyes now. Children don’t need to be reading the nitty gritty about Emily when even she doesn’t know the half of it. We have enough emotional stuff to deal with without Emily potentially coming home from school ( if she ever gets there ) and worrying about what kids have said re her prognosis. Hope this makes sense and is not too blunt but I just want to protect her at this vulnerable time. I don’t want Jack to be hearing things about his sister either as he is already struggling with it all.
Jack has been very confused over the last few days also and had a bit of a melt down at school. He was worried that Em was getting sicker because she is never going to school and thought that he may have her illness too as he was feeling sick. I told him that Emily’s cancer was back in her legs and that she is on very strong pain relief that makes her very tired, too tired to go to school. Jack said “Oh OK.” That is all he knows at this stage, and all he needs to know at this stage.
We really appreciate everyones love and support and understand you feel helpless and want to do things to help, but please ALWAYS text or ring first if you need to come around or want to help out. I will get back to you if/when I can. The day to day grind of this all is so unpredictable and at times the amount of attention can be all consuming and overwhelming, and takes away any control I have over normal day to day living. I don’t want the awkwardness of someone turning up when I am dealing with a horrible episode of Emily writhing in pain etc.
Right, I feel like I have been ranting a bit but it was really important for me to write all of the above. On a nicer note ….We are very lucky to have such awesome friends and family and live in such a supportive community with great people!!
Kath and Gary
Lusia
September 10, 2012 @ 9:51 pm
Happy Birthday beautiful Emily
With love
~Tanishas Mum~
Charlotte's Mama
September 10, 2012 @ 9:41 pm
Happy Birthday beautiful girl, I hope you had a lovely and special day with your family. Sending love xxx
Chrissie Wooddin
September 10, 2012 @ 8:59 pm
Happy Birthday Em, hope you enjoyed us all singing to you before school this morning, your wee giggle is so cute he he he. You call me when you when you want your sleepover ok Jenny has all the craft work ready for you to do :) love you heaps cute nose x x x
aunty x x x
Lois & Murray Scott
September 10, 2012 @ 5:00 pm
Dear Emily – hope you’ve had a lovely 9th Birthday today with your family, & you got some nice pressies.
Thinking of you always.
Love Lois & Murray
Lyndy Prendergast
September 10, 2012 @ 1:44 pm
Happy happy birthday to you
Happy happy birthday to you
Happy happy birthday dear Emily
Happy happy 9th birthday to you!!
Hope you have the most special birthday today with Em, we all know how much you guys deserve too :)
oxoxoxoxoxoxoxoxox
Helen and Irene
September 10, 2012 @ 8:55 am
Hi Kath and Gary, sending birthday wishes to Emily. You continue to be in our thoughts as you go through this difficult time. Hope Emily has a great day. Irene and Helen
Lusia
September 9, 2012 @ 9:30 am
Dear Kath & Gary
My heart hurts for you – the emotional rollercoaster you are on is so overwhelming. It is a struggle to know what ‘normal’ is. It just ‘is what it is’ and you carry on loving & caring for your family the best way you can. Just remember you are doing everything you can for your beautiful family. Every decision you make is the right one for you and your family. Don’t ever think or let anyone tell you otherwise. We are all here behind you so you know you are not alone.
Treasure each & every moment. All my love and support is with you xx
To everyone else, the one most important thing you can do for Kath & Gary and their little ones, is to respect and adhere to their wishes. This journey is long and tough and they need your help and the best help you can give, is to please do what they are asking regarding visiting and calling etc. You may feel helpless but trust me they KNOW you are there right behind them – what they need the most from you is to do what they ask.
We are so thankful that Kath is able to make these updates, a lot of parents in this position would not be able to this. So it is very important to take care with this knowledge. Kath & Gary have chosen what information to give their beautiful family, so please respect this and help to keep it this way. Believe me, saying the wrong thing at this time causes more pain and heartache, it also changes how people (especially children) react & behave, and this wonderful family do not need any further stress at this time. You are all wonderful caring people and I know you are all greatly appreciated.
~Tanishas Mum~
Taylor Family
September 9, 2012 @ 8:49 am
You are an amazing family and how lucky Emily is to have such a caring little brother.
Thinking of you all lots.
Love Melissa, Brian, Nicole and Aimee. xoxoxo
Tania
September 8, 2012 @ 10:26 am
Hi kath & Gary.
Sending lots of love and prayers your way for everyone. What fantastic parents u r in this horribly challenging & traumatic time for your family. Xxxxx
jo knighton and family
September 8, 2012 @ 9:20 am
love to you all..xxo the knightons
Chantelle & Cameron Power
September 7, 2012 @ 8:48 pm
Sending you all our love and hugs. I really admire your strength xoxo
stacey dodd
September 7, 2012 @ 6:37 pm
Hello kath n gary, I just wanted to say you are all a true inspiration to everyone, were all thinking of you all bk here in england and so glad you have amasing family and friends around you over there! Thank you for thinking of others too and keeping r em’s blog updated!
Big hugs n kisses to everyone, ur all amasin strong ppl
XxxxxxX
Leisa Webster
September 7, 2012 @ 3:44 pm
To Kath and Woody,
You guys are a total inspiration, with the amount of strength, love and happiness you have through what you have had to endure. As always, we are thinking of you all, xxxxxx
Gav,Kat, Angus & Phoebe
September 7, 2012 @ 2:14 pm
Love and hugs all round. Always in our hearts and minds.
KATHY
September 7, 2012 @ 7:58 am
HOPE lives on.
HOPEFUL AS THE BREAK OF DAY
HOPE is the pillar that holds up the world.
Each day we think of you and your struggle
Love The Kesselers
Tina
September 7, 2012 @ 5:00 am
Can i just say that I think ALL of you are coping with this so so well, don’t think i could. I agree that its best not for Emily to know her prognosis as it would only make matters worse, and you just want to make Emily’s life as quiet, hassle free as possible right now and you want to protect her as much as possible too……i would feel exactly the same if it were my child. Poor Jack too !!!!!!!! xx
Uncle peter
September 7, 2012 @ 2:33 am
Hello Kath, Gary and kids
Just want you to know we are all thinking about you over here, can’t begin to imagine how you are feeling, so pleased you have such lovely and supportive friends around you. It’s hard to know what to say at times like this so will just say “Love you guys and thinking of you” XXXXXXXXXXXXXX
annie bathurst
September 6, 2012 @ 11:05 pm
enjoy family time and hang out in pj’s, xx love and hugs and a big happy birthday to Em for Tuesday. x
Con
September 6, 2012 @ 10:12 pm
Kath and Woody,
Thinking about you guys lots. Amazed by both Emily’s and your ongoing strength.
Love Con, Tina and Elliott.
Kim Astall
September 6, 2012 @ 10:03 pm
Hi there x
Most days I’m home alone if you’d like some out-of-home sitting with the middlies…Quite good at walking slowly but am happy to help with games sessions/DVD watching or just chilling while you rest with your biggest and littlest *bumpiest loves!
Love and hugs for all XXxxxx*
Paula Chambers
September 6, 2012 @ 10:03 pm
Oh Kath, my heart bleeds for you all. This is so so unfair. Love and hugs to you all. x x x
Clatworthy family
September 6, 2012 @ 9:55 pm
You are so amazing at this terribly difficult time. I hope that everyone respects your wishes and thank you for updating us all as, Emily is constantly in our thoughts. Xox
Julie
September 6, 2012 @ 9:54 pm
Our love and thoughts are with you all as I sit here reading this with a few tears – totally agree with the above its so unfair.
Julie xx
Lyndy Prendergast
September 6, 2012 @ 9:53 pm
Hey guys,
Feeling soooo sad for you guys having to deal with all of this!! Really well wrote Kath and you RANT all you like you have every right too!
Pleased Em got that special birthday with her friends while she did have a little energy!!
Rest up when Em does Kath you will need whatever energy you have to push that precious bub out soon :) Thinking of you guys always, much much love to you all oxoxoxox
The Prendergasts
Abbott's
September 6, 2012 @ 9:51 pm
Hi Kath and Gary,
Thanks for the update, we have been wondering how you all are. Poor Jack must be finding everything very upsetting. We are more than happy to pick him up if he wants to come for a play at any time. We have some huge dirt piles that seem to be like a magnet for our boys! Well done for expressing your needs too, it is obviously a time you need to put your family first and we are proud of you for doing so. You are really great parents.
All our love, from Don and Steph.
Lisa jackson
September 6, 2012 @ 9:50 pm
Kath & woody, I have started this comment a couple of times as I don’t know what to say, no one should have 2 go through this horrible disease, I hate cancer, but watching em must be heart breaking, love to u all, u are never far from my thoughts xxx
Bridget
September 6, 2012 @ 9:38 pm
Hugs Kath, thinking of all of you. You are doing an awesome job.
Vanessa
September 6, 2012 @ 9:12 pm
Hi Kath and family,
I read these everytime (and always end up with a tear or a few) and never know what to say. You amaze me, completely and utterly amaze me! I just wish things could be different for you all, it’s just so unfair.
I hope everyone will support your requests as this is your much needed family time and Ems rest.
Thoughts are will you all
xx
Catherine
September 6, 2012 @ 8:51 pm
Your always in my heart xxxx