Wednesday 22 August, 2012
Hi everyone,
Emily’s pain is still being very well managed at this stage with the long acting morphine. Had a visit from the palliative care nurse yesterday and we have a plan in place for when pain worsens. Very difficult reading this plan but it ticks all our boxes in terms of how we want her pain to be managed. Emily is very tired and anaemic and would benefit from a blood transfusion to give her a bit of energy for a couple of days but she has declined it so we will respect her wishes. She couldn’t see the benefit of spending hours in the hospital having a blood transfusion for the sake of some extra energy when she gets home. She said she would rather get energy from food and drink and that the blood transfusion should be used for someone who really needs it. Can you believe this kid!? A blood transfusion also involves an intravenous needle to be put into her arm. She has been there done that numerous times and does NOT want to go down that road again and I can’t say I blame her. Emily has attempted a half day at school today. Nothing like giving your child their morning dose of morphine and sending them off to school! ( She felt up to it so why not… ).
Apart from the ongoing mental stress for Gary and I, life remains fairly “normal” while Em is pain free. The hardest thing at the moment is finding the balance between telling her about upcoming events so she can look forward to them, or waiting til the day to tell her about fun activities in case she isn’t well enough to do the activities! We want to avoid disappointment for her, but in life people need things to look forward to! I hate that the luxury of planning anything more than a day or so in advance has been robbed from us. We are also struggling with how much info to give our other children. I think we will cross that bridge when we really have to and let them have as much normality as possible. Emily has been told by the Oncologist that her cancer is back and obviously she is not happy about it but said to me ” I am not worried Mum because it doesn’t feel like Neuroblastoma and this pain relief is really helping me.” That is where the conversation ended. Obviously it is Neuroblastoma but if she doesn’t want to think that it is then so be it.
In terms of knowing what to tell your kids about Emily’s situation, I really have no answers for you other than for you to tell whatever you think is right for your child. I would just appreciate it if the kids who play with Em try and have conversations other than cancer as Em is not interested in talking about it really. If she initiates a conversation about it then so be it, but that is not that likely to happen. I don’t want cancer to define Emily as she is much more than “the kid with cancer” (as we all know : ) )
If you are feeling helpless throughout this hideous journey and thinking of ways to help, perhaps consider donating some blood : ) Emily had numerous blood transfusions during her initial treatment and there are many more kids who need blood. One donation can save up to three lives. It is so easy to do and helps so much!
Thanks again for everyone’s support both emotionally and practically. The meals and transport of our other kids to various activities take the weight off tremendously!
Will update again in a few days.
Kath and Gary
Chrissie Wooddin
August 27, 2012 @ 10:28 am
At such a low time in our journey with Em it is so heartwarming, but not surprising, to read that she is being such an inspiration to someone unknown (as yet) to our family. Just amazing !! Good on you Em and welcome to our family Sarah T :)
love as always Em
aunty x x x
Sarah H
August 26, 2012 @ 1:00 am
To an Inspirational young lady and an amazing family:
I happened across this blog yesterday & have read it entirely with tears, smiles and such compassion for Emily and you all. I too have terminal cancer, I was 25yrs old when diagnosed with a very rare Sarcoma – I went through a year of Chemo/radiation/procedures and I have to say, I certainly did not handle it with as much Grace and acceptance as Emily has.
She is an inspiration to me, and honestly – she has taught me so much through her blog! I am currently in the ‘remission yet will come back with no curative options’ phase – and I struggle mentally & physically with this – emotionally I am struggling – through reading about Emily & how she handled herself throughout, has really helped me! I am grateful to her and even though she is the same age as my oldest boy (Ryan is 7, 8 in Nov and my youngest is Matthew, 6!) – she has helped show me that life is for living, now wallowing, and to get out and have fun, smile, laugh and be happy!!!
Kath & Woody: you have such a beautiful family and an amazing strong gorgeous Emily!!! I know how rough cancer treatments are – and the saying ‘the treatments are worse than the cancer’ really are true – so for Emily to be such a trooper speaks volumes to everyone who is going through the same – truly an inspiration! You are both doing so well, wonderful parents and coping the best you can given the most horrific of circumstances.
You don’t know me, but I feel like I know you through your honest, personal blogging. Considering I am a fellow cancer traveller, Emily’s Journey has truly inspired me to be a better person through my own cancer journey – I know it will help others as well!
Emily and your family are in my prayers always, enjoy your precious moments together as a family – as I make those special moments with mine :-)
Sarah xox
Lois & Murray Scott
August 25, 2012 @ 5:47 pm
Kath & Gary – Sorry to hear Emily is not so well again – glad the pain is able to be managed.
You two are a pillar of rock & you show amazing strength.
Thinking of you all always.
Love Lois & Murray
kim
August 24, 2012 @ 10:16 pm
Kia Kaha Emily and her wonderful family.
Kath and Gary, plus Emily if you read this love,
Honestly my pain pales into insignificance when I consider what you cope with daily!
I haven’t been here for 10 years yet but apparently I can donate plasma so will be checking on Monday when I go for my GP update after the physio.
If you’re around next week, perhaps I can hobble over with a movie and sweet treats for ‘us girls who need some tlc’?
Gary can be an honorary, if he’s there, as there’s plenty of tlc for you all!
Hugs and smiles oxo : )
Kirsty Bush
August 23, 2012 @ 10:46 pm
Hey guys!! Sending you all big sloppy kisses from us here on Scotland Island. Em you are an absolute inspiration & I hope your not too unwell to give your mum & dad a bit of cheek now and then :-) xxx
Lusia
August 23, 2012 @ 8:21 pm
Sending love & strength to you all. It’s all so familiar, reading this piece. Just take every precious hour & minute as it comes. Takes lots of photos & videos of you all together – it’s important. It is my regret that we took thousands(it’s true) of photos and hours of video but there weren’t many of just me with Tanisha, as I always had the camera because I wasn’t keen on having my picture taken…How I wish now that I had. Hope I’m not intruding too much at this time. ~ Tanishas Mum ~
Becky oliver
August 23, 2012 @ 7:05 am
Thinking of you all so much! Xo
tina
August 22, 2012 @ 11:30 pm
These are so very difficult decisions to be made and it seems to me that Emily knows her own mind and knows what is best for her, which is number one on the list i think !!!!! It is very hard for the rest of you though, and i suppose you just have to be brave and support Emily in everything that she requests and does. I did have a lump in my throat when i read that Emily would prefer the blood transfusion to go to somebody else that needs it,,,,,,,,,,,,,,,, such a special little girl. xx
Lyndy Prendergast
August 22, 2012 @ 3:52 pm
Hey guys,
Thanks for another update have been thinking of you all heaps, you just continue to amaze me!!
You must be soo proud of Em, shes so grown up and nothing seems to bother her at all, she has had everything thrown at her and still she thinks of others been much more needy than herself!!
Hope she managed her half day at school and gets some good play time in with friends before shes totally zapped again..
oxoxoxox Love the Prendergasts
KATHY
August 22, 2012 @ 3:26 pm
All those decisions seem right to me.
Ride the wave when necessary and if there is calm waters let it be.
Emily knows whats right for her hard as it is for you.
She would let you know if she needs pain relief.
What a nightmare for you Katherine and Wooddy, one day at a time seems best at the moment.
Dont forget you are the best parents in all this and
us on the outside one can only imagine what a hell this must be.
STAY STRONG
lOVE THE KESSELERS XXXXX
Trudi and Craig Squire
August 22, 2012 @ 1:54 pm
Thanks for the update Kath. You guys are amazing. I love that you respect and empower Emily to make the decisions. You all continue to be in our thoughts and prayers. Love and Hugs, Txx