Wednesday 10 October, 2012
Hi everyone (A fairly graphic account of Emily’s current health status …)
Emily is looking beyond terrible at the moment health wise. Very yellow/grey looking and is slowing down a lot in terms of everyday life. She is very hunched over when she walks now and just looks so so sick :( She is having minor nose bleeds due to low platelet count and could have a big bleed anywhere in her body at any stage. So frightening and just heart breaking for us. The pattern seems to be that she has a big decline then is stable for a while. I am unsure as to how this recent decline will pan out?? My gut feeling however is that this won’t be drawn out for months anyway. Gosh no parent should have to be writing such words about their child but this is the reality of the situation and quite frankly it sucks!
The tumours on her skull have grown significantly over the last couple of weeks and I suspect she has tumour activity in her abdomen as her belly is very distended, and she is having a lot of pain in the rib region. Her bruised and swollen eye lid is still apparent also from the tumour in the eye brow region. She is on an even stronger dose of oral morphine now which seems to be helping a lot, and the arrival of her baby brother Alex is a nice distraction for her at this time.
A good distraction for me too to be honest. Emily is very calm and settled and constantly talks about her future in a very positive light. Her latest goal is that she would “quite like to be a journalist and get a puppy when she gets her own apartment.” Who are we to shatter her hopes and dreams by telling her this won’t happen. I certainly won’t be. She is quite content watching movies and still has the energy to chat lots, laugh lots and argue with her siblings which is a small blessing I guess.
We are continuing (at this stage) to invite her friends over when she is up to it for a short catch up. We don’t treat her like she has cancer but it is apparent now that her activity levels have declined a lot so I need to be mindful of her capabilities so she doesn’t overdo it and end up in pain. She is literally running on empty as her iron levels (haemoglobin) will be next to nothing as the Neuroblastoma will be inhibiting the production of red blood cells. This would explain her dreadful colour also.
Gary and I are just enjoying being parents of five children while we can and enjoying the small things like watching movies with Emily and recording Emily do such things as help bath baby Alex and read bed time stories to Luke. We continue to put on our poker faces though this is proving very difficult for me at the moment with all these post baby hormones. Gary is finding it particularly difficult at the moment too understandably. I think having a new baby really heightens emotions, both happy and sad ones.
Whilst Emily has slowed down, she is NOT bed ridden and is still very much “living” life and enjoying the small things. Alex is her favourite “small” thing at the moment and last night she said to him “You are such a precious wee boy aren’t you Alex”. She is such a kind girl and I am so proud of the “9 going on 20 year old” girl she has become.. and I tell her this everyday :) She is a well adjusted child and we have given her a great life and will continue to do so….
Thanks again for meals/vouchers and practical help with our other kids. A special thanks again to the staff at ” The Cat’s Pyjamas” Preschool for taking such good care of Charlotte and Luke. Under normal circumstances I could deal with my little ones, but this is far from normal circumstances and you take the pressure off immensely. Another special thank you to Rolleston First Learners preschool for the amazing fund raising they have done in the recent weeks. Such kind, genuine people in our community who help out practically whilst being mindful of our need for space. THANKS. We really do appreciate everything.
Kath and Gary
Tina
October 12, 2012 @ 3:21 am
I don’t think i could have written that without a tear running down my cheek let alone read it with a lump in my throat. Absolutely devastating to read,,,,,can’t imagine what you are ALL going through seeing Emily the way she is now.
My thoughts and prayers are with you all. xxx
patricia luff
October 11, 2012 @ 7:23 pm
no parent should be asked to walk this journey but kath you and gary are showing the world how it can be walked with love and care stay strong hugs to you all
Catherine
October 11, 2012 @ 6:31 pm
Sending you all our love. You have a beautiful family and five fantastic kids. Your always in my thoughts and prayers xxx
Mel Stenhouse
October 11, 2012 @ 6:08 pm
Emily
Whilst I only know you from being a relieving teacher at Rolleston, I can’t help but admire and respect you and your family.
Emily I think you are incredible. What a star! You are so talented, bright and loved by so many! I remember teaching you in 2011 in Room 14 Miss Stucky’s class. You had so many friends in that class. I do remember how much fun you and Abby had . You are so adorable together! How lucky you both are to have each other! I love the way you laugh and chat with your friends. You are so inspiring.
I bet you are loving having your beautiful baby brother Alex to play with at home. He is gorgeous. I have an Alex at home too. He is the same age as your sister. He loves babies and has often asked me when he is getting a sister!! Sadly that won’t ever happen and I am destined to have three noisy but adorable boys.
I have just finished a stint working at Springfield School and I will be back on the relieving circuit in and around Rolleston. I may bump into to Jack at school. I hear he had a great soccer season. My three sons played for the first time this year and their dad, Greg played for the first time too. What a great way to meet fabulous people in our community. I saw your lovely mum just before she had Alex. She looked amazing. We talked a lot about you and I enjoyed hearing about your birthday party. Wow you are a big nine year old – happy belated birthday wishes to you Emily!
Enjoy the rest of the school holidays Emily. I am delighted to hear about your new brother. I am sorry that you haven’t been feeling well, but we are all thinking of you.
Much love
Mrs Mel Stenhouse and family
xxxx
Kim Astall
October 11, 2012 @ 12:04 pm
Kia kaha! You must have a well of inner strength, the pair of you, wonderful parents, that allows you to keep on keeping on. I admire the strength of conviction you have had over such painfully difficult choices you have had to make so that Emily and the rest of your gorgeous children can live ‘normally’. You’re never going to have an ordinary life though…you are extraordinary and everyone around you benefits from just being part of this story, helping, praying, loving in their own ways.
Lots of love and hugs to you all : ) XXxxxxx
Lusia
October 11, 2012 @ 12:19 am
You wonder sometimes where the strength comes from – it comes from all the love in your heart. All the love you have for your precious girl is guiding you and helping you get by. It’s been helping you and holding you up, it’s the reason you make the decisions you make, it’s the reason you can make it through each day, it’s what is holding together your breaking heart, it’s putting that smile on your face when all you want to do is cry, it is everything. Just hold on tight to all that love and never let it go…
~Tanishas Mum~
Kirsty Bush
October 10, 2012 @ 10:59 pm
You all are truly amazing. I think about Emily & how you guys are managing & think you are toughest & bravest folk I know! Welcome Alex you are easily as gorgeous as your 4 other siblings…confirmation again that yes Kath & Garry you make awesome kids! Love to you all & please tell Em she inspires me especially when I feel sorry for myself xxxxxxx
Lou Miller
October 10, 2012 @ 10:22 pm
I have been flowing Emily’s story thru Michelle’s fb updates. I can’t even begin to imagine what you are going thru. sending you strength and love
Roydhouse family
October 10, 2012 @ 10:14 pm
And what a wonderful journalist she would make! I remember parent helping in Mrs Mutu’s class at writing time and ‘helping’ Emily with her story, although my ‘helping’ was very brief because she had already written over a page of a very interesting and descriptive story. In the same time some of the boys had struggled to get out a couple of sentences. So I moved on to where I was more needed! It seems to me that you are doing everything right and Emily has fantastic parents behind her. This shouldn’t be happening and we can only offer our love and say that you are constantly in our thoughts.
Annie Bathurst
October 10, 2012 @ 10:05 pm
Welcome to such a special family little Alex. You all continue to amaze and inspire me especially EMily, but mostly all of u as a family which have made EMily who she is in this terrible illness. You are all never far from our thoughts and prayers. Love and hugs. The bathursts. Xxx
Brenda Stevens and Family
October 10, 2012 @ 9:44 pm
Thinking of you all …… as always!!! Love, hope and strength to you all at this time xxxxxxx
The Schats
October 10, 2012 @ 9:26 pm
Oh god, that just bought me to tears, you are all so strong and doing such an amazing job. I can’t even begin to imagine how you must be feeling at the moment. Sending all our love always
Amanda and Dan x
Congrats on the wee one, you deserve some sunshine in your lives x
Amy and Jase
October 10, 2012 @ 7:05 pm
Absolutely heartbreaking. Thinking of you and your family.
Amy, Jase, and Lexi x
Annalise Olsen
October 10, 2012 @ 6:25 pm
Dear kath
The way you are handling this journey you should never have to be on in the first place, with such strength and compassion never fails to amaze me. It’s just heartbreaking and not the way things should be, it’s just such a crap reality.
It’s so nice that you have beautiful baby Alex to bring more love to your family and like you say to provide some distraction.
I think about you everyday and am sending lots of love your way
Annalise xxx
Paula Knowles
October 10, 2012 @ 4:44 pm
Love and thoughts are with you all always xxx
Shanda, Clayton and boys
October 10, 2012 @ 4:39 pm
Wow, that was hard to read through the tears, can’t even imagine having to write it. What an amazing person you are Katherine, both you and Gary. Enjoy each and every day with your precious family, as I know you will. Thinking of you always. xxx
KATHY
October 10, 2012 @ 3:55 pm
I am so very sorry. You do wonder sometimes just how life can present you with a darling little man who is perfect in every way, and on the other hand taking its toll on dear Emily…….
Understandably Katherine how you would want to shed tears……but if you can (as you have been) stay STRONG for her.
This rips me apart why have you been dealt this card???
Love to each of you and Grandma Sherilyn and Grandad Tom.
Oh Dear so sad………
Love The Kesselers XXXX
jo knighton and family
October 10, 2012 @ 3:52 pm
big love and hugs xxoxoxoxox
Blair and Toni
October 10, 2012 @ 3:05 pm
You guys are amazing. You do so well keeping everyone updated. Enjoy every moment with your beautiful children, big and small. All our love and hugs, the Millers.
Tui
October 10, 2012 @ 2:31 pm
Walking with you xxx
Lisa Jackson
October 10, 2012 @ 2:18 pm
lots of hugs and kisses to you all
XXX Lisa Jackson
Anna elders
October 10, 2012 @ 1:44 pm
Sending you much love Kath & so proud of what a great mum you are to your precious wee girl & crew. May you all soak up as much time together & may Emily continue to touch and inspire us all as she has, for many, many years to come x