Sunday night summary
Hi everyone
Well the news from the meeting with the oncologist and radiology consultants on Friday was not good. The second area below the tumour which has been removed is confirmed as a secondary tumour. There is still some work to do to confirm its pathology (that is being done in Sydney)- at the moment it is also considered to be a PNET. We had a further meeting with the Mike Sullivan the oncology consultant on Saturday to discuss the detail of the tumour and the treatment plan which is now being redeveloped in light of this development. He worked on this all day Friday and Saturday.
Because of where this tumour is it can only be treated with serious amounts of radiotherapy and probably a very aggressive progamme of chemotherapy. The chances of success in treating the disease is now much reduced from the original prognosis but Mike Sullivan is optimistic about developing a plan that will work. In other words the journey for Sara and us is now much harder and longer with much more serious long term side effects. So we have had much to think about over the the past 2 days. Tomorrow we have another meeting with the oncology people.
The plan is now a bit of a moving feast and the first step is trying to assess the nature of the tumour and its activity. This will be done by doing a PET scan (which is not available in NZ) in Sydney on Tuesday. Sara, Rob and Sue will be taking a day trip to Sydney to do this and our really good friend Pip Aitken in Sydney is going to pick us up from the airport and be with us for the day.
At this stage Sara is still having her operation on Thursday for the lumbar puncture, portacath or pick line and ovary tissue collection. She may also have some bone marrow taken for later use following the chemotherapy treatment. The radio therapy is still due to start on the Tuesday 7th February.
Over the weekend we have had some great family time at our new home here in Christchurch and down at the beach at Sumner. Ruth visited for a massage last night and Robyn, Mac and Nana Crawford brought dinner here tonight. Kate has been wonderful, sleeping in the room with Sara and supporting her with her great sense of humour. Kate is now planning to return to the States next Tuesday week. She has also been working on getting Saras diary up to date which Sara does not have the energy for but real wants it done! Sara is in good spirit and been having some fun time this weekend but she is still very tired, so we will continue to manage visitors with the prior phone in system. Thanks for the continuing stream of messages and support - it means a huge amount at this very difficult time.
Warm regards
Rob, Sue Kate and Sara
"Everything that is done in the world is done by hope"
Martin Luther
posted by Rob Young @ 9:45 pm
35 comments
35 Comments:
Dear Sara, Rob, Sue and Kate. Its francie here, I cannot begin to imagine what a whirlwind 3 and a half weeks you have had.. Dad has been passing on news and tonight gave me the details of this site..
I have been thinking of you all and want to send all my love and thoughts and hugs to you all. There is no rhym or reason why something this big has to happen to you and its not bloody fair becaause its always the good ones who have to go through the really tough stuff. I hope the PET scan is beneficial and that the other procedures go smoothly later in the week. My thoughts are with you all.. much love francie
Dear Sara
John and I have been thinking of you all day! Heard you had a lovely time at the beach - Great! Best wishes and love for tomorrow. Hope it all goes well and is not too tiring.
LOVE GLENDA
Hi Sara, Rob, Sue and Kate,
It is difficult sitting here on the other side of the world and feeling helpless to do much. You are all in our thoughts and prayers. I wish you good luck with the scan and the upcoming treatments. We are all rooting for you.
Love Lothar,Katherine and Stefan
dear Sara
you and your family are very much in our thoughts We pray that all will be well . the P .E >T . scanner is amazing
Wakefield hospital /wellington
have only just got their one up and running / last week I think,we are a bit slow here in N .Z.
I think is just so wonderful for cancer patients , your trip will be a bit of a adventure ,wont it? I hope you can sleep on the plane .
I met a young lad in hamilton who had been over and had a P.E.T. scan taken in aussey they discovered some small cancers in his brain and he was having radiotherapy to rid him of them . it is just amazing what doctors can do these days they work very hard to see everyone gets the right treatment we are all very unique esp us cancer patients !!!!!eh? I didnt realise how many types and different senarios that can occur until I got involved
Our love and heaps of big smiles go your way
carol stephen and co
dear Sara
you and your family are very much in our thoughts We pray that all will be well . the P .E >T . scanner is amazing
Wakefield hospital /wellington
have only just got their one up and running / last week I think,we are a bit slow here in N .Z.
I think is just so wonderful for cancer patients , your trip will be a bit of a adventure ,wont it? I hope you can sleep on the plane .
I met a young lad in hamilton who had been over and had a P.E.T. scan taken in aussey they discovered some small cancers in his brain and he was having radiotherapy to rid him of them . it is just amazing what doctors can do these days they work very hard to see everyone gets the right treatment we are all very unique esp us cancer patients !!!!!eh? I didnt realise how many types and different senarios that can occur until I got involved
Our love and heaps of big smiles go your way
carol stephen and co
Hi Sara I think with 179 credits and lead roles in two major dramatic productions to your credit, they should be falling over themselves to upgrade you to business class tomorrow...Hey here's hoping!
Hang in there team. Things have certainly got a lot tougher but at the same time Sara I've never known you to take the easy route when there was a more difficult or stressful option available! Thinking of you all. Thanks again for the blog updates Rob. These cannot be much fun to write. Keep positive: it's only 11 months till Totaranui next summer.
Love and prayers
Alan, Adrienne, Tom and Fred
Dear Sara. Our thoughts and love are with you in a time of so many highs and lows. Each mountain you climb and conquer seems to lead to another but hang in there girl there are worht the journey.
Best wish for Sydney and Thursday.
Wiyh much love Shelley Will Wilbur And Dhugald.
Dear sara Sue Rod and Kate. Sorry to here that things have been upset the p.e.t scan is fine i had one of them, nice over there to.Keep strong it does get confusing all the information and having to explain to other people thinking of you all heaps.Life sucks sometimes.here if u need me luv nicola burgess
Dear Sara Rob Sue and Kate,
Well another week of real highs and lows for the young family. Congratulations Sara on your wonderful NCEA results. A real credit to you and your determination.
Very sorry to hear the latest news. The PET scan will be an enormous help for the medical team in working with you to beat this challenge.
Take care all of you and a safe trip to Aussie. Thinking of you all.
Lots of love
Peter
Sara, Rob& Sue and Kate
We have had you all in our thoughts especialy over the last few weeks and in all our activities at Totaranui this year. We collected a shell from the beaches we visited Anapai Awaroa, even little old Goat Bay. We hope to give these to you as small token of our thopughts and love. We are reaaly impressed by you and your family's strength at such a confusing and challenging and exhausting time. All the best for the treatments that await you in Australia fancy having to get so sick to return to a place of recent holiday adventures. Some girls will do anything for a shopping trip to Oz!
On a more serious note Love as always holds strong ... we send our love to you to help on your journey through your tough recovery.
Love from jan & Pete, Alice Tom and Jack van der Heyden
Hi all you awesome strong people,sorry to hear the news isn't so rosy but...
'Things work out best for people who make the best of the way things work out' so here's hoping there's something positive down the track. Sara i can't believe you got that many credits for NCEA - all the big kids round here have been calling and texting me with their results and no-one else comes close! You're such a star!
Anyhow, thinking of you all and good luck for Sydney.
XXXBu
Hi guys, man can that Cheese talk. Anyway hope the trip is ok, will be thinking of you all and do hope that there is a possibility of some shopping in Sydney even if you just buy something at duty free.
Great weather here actually it is almost too hot!!!!
Wine & salmon festival was excellent, I got to be Jo Seagers assistant AGAIN, that woman really LIKES me !!! I think I have taught her eventhing I know bout cooking now. Spent two hours sitting in the river at Poaka with a bottle of wine and two mates yesterday, let me tell you that it is the only way to
go. Thinking of you all heaps and sending lots of love and hugs Jacq & Jake
Hi Sara
I've just had a blogging lesson from Bob, so here's hoping this time I've got it sussed.
I've been a busy Grandma for the last week, enjoying having Harvey and Mahina to stay - lots of fun.
Back to school today to sort out my room and open heaps of mail that seems to come my way.
I hope your trip to Sydney tomorrow goes well. I will be thinking of you all. Take care,
Heather McO
Hi Sara, Rob, Sue and K8
Hold strong as we all on the 'outside' are.. as Lothar says we are all rooting for you!
Glad to hear you had a fun time at the beach with K8. Will bring some Tot sand to you next week so when you visit Sumner you can pretend!!
Have a safe journey tomorrow... hope you get time for a spot of Retail Therapy too!!
Love from the Golden Bay team
Dear Sara Rob Sue and Kate
Thoughts and love continually flowing your way.
Anne, Bob, Hayden and Bridie
Hey Sara someone wants the infamous haybale recipe without having gone through the long and arduous apprenticeship.. hmmm. But considering the circumstances maybe we can form a "HEFFS" fanclub!!!
"Haybale Eating For Fabulous Sara"
Well to give out the recipe is a trifle difficult although I am not an out right fan of trifles, but they are a distant relative to Haybales. But that is beside the point.
Actually truth be known I dont follow a recipe!!! Recipes and I are do not seem to stick. Its all a lot of this and that and make it up and Bobs your Aunty.
a blob of butter
melt it
put in some/a lot/ a heap of cocoa powder/baking cocoa what eva depends on the seriousness of your chocolate needs/desires/doctors orders
put in some icing sugar.. the amount also depends on your blood sugar levels/desires/withdrawls
can add a dash of vanilla essence but not totally neccessary
add some boiling water but leave the sauce still thickish but thinnish enough to roll those bales in and soak it up a bit
add lots of positive thoughts for Sara while stirring gently
Try not to lick your fingers or if you do make sure no one is looking (the latter works best... it also means you can taste test without having to account for how many haybales you've gobbled)
some say you shouldnt boil the sauce but hey(bale) theres always something else happening to distract you. You will have to let the sauce cool a bit b4 you roll the bales or you'll burn you fingers and your insides when you are tasting them!
These particular haybales must be consumed continuously and any side effects ignored totally (eg weight gain) or responded to immediately eg addiction. They must also be consumed while thinking more positive thoughts for Sara.
Happy Haybaling!!
Ps you MUST make some within 24 hours of reading this unless you have a good excuse which must be forwarded back to Aunty Haybale for consideration.
Hi Sara, Rob, Sue, Kate & family,
Thanks for keeping us all up to date - and thanks for your inspirational positiveness. Truly. Great NCEA results, Sara! I guess you'll be getting organised for Sydney, now. It seems strange that you'll all be so close, but for just the day(?). It's just 3 hours drive for us, so if we can help in any way at all, do let us know. Love from all of us, Mark, Kate, Harriet & Gus.
Hi Sara and Rob, Sue, Kate and wider family
Lots of love coming to you all and know that you are constantly in our thoughts.
Love Connie and Taylor.
Hi Sara, Rob, Sue and Kate.This is my second attempt today to get a blog message off to you, the first one dissappeard into syber space somewhere.The weather for the Cant'bury Champs was great and the water conditions at its best. I was going to tell you about Zed and Caketin but Nadia has got the drop on me. They really did well in the doubles with a very convincing win in the heats and a great finish for fourth place in the finals, they also had an "outing" in the singles but we won't go into that. As Nadia says, watch out when they get fit, I have Zed pegged for some road work (She is going to hate me) and Bill has put together a training program that should work wonders.
Will be thinking of you winging your way to Sydney tomorrow for your PET scan and all this other stuff that will be happening later in the week.
Just remember what Val says, "Girls can do anything"
Hang in there girl.
Wayne Mac
Hi Sara Rob Sue and Kate,
We have been thinking about you all heaps having a web site is brilliant. It was back to creche today nice to catch up with everyone but wow it was hot. We all did abit of cleaning at the end of the day but definitely not up to your standards. Take care everyone hope your trip goes well be strong and keep laughing.
Love
barbara and Bob.
Dear Sara, Sue, Rob and Kate,
Heaps of good wishes and loving thoughts to you all, and particularly for your trip to Sydney. Do hope you get to do some shopping and get to see something other than hospital walls!
We just had a weekend in Twizel at the Feaseys and had a great time - saw heaps of people, and had a chance to see Caitlin and Zoe in action. They really had a great finish when they came in for 4th in their final - very exciting.
It was very hot and we had a visit to Loch Cameron as well as Lake Poaka. Went past your house numerous times and you'll be pleased to hear there was a sprinkler going!
Everwhere we went your name would come up in conversation. So many people have you all in their thoughts.
All of this is so big and scary but you have amazing specialists working for you, who are speeding everything into action to get you better.
Love and hugs from us all. Always in our thoughts.
Make friends with uncertainty and look forward to dreams.
Rest well
Cynthia, Victoria, Mike, Ben, Andrew and James
4 Sara, rob, sue, and kate, just to let you know that we are all rooting for you here too. More massages next week, anytime you want. take care and love to you.
I loved the haybale recipee sounds great I got to try it, when I get back to canada.Maybe Trish in Quesnel, and I will have to get together sometime to visit over haybales.
Auntie Ruth,
Hey I had my first Jaffa today, they still are very yummy, 3 weeks in NZ and no Jaffa's. mmmm.
heysara
Good to hear everyones been giving you news of our race! were gutted you weren't there to see our O 4 oarsum finnish! It was so different with out you there! I came up to timmerz 2day to see my cuzie bro's. we went 4 a swim so i could expose my pasty switezland skin to the sun. I'm working on my tan! i should be as brown as you soon! Its so hot here! It was 42 deg in twiz the other day! its going to be hot in aus! hope your scan will clear some stuf up! and that the kemo/ radio thearapy goes well. itl be tough, but i bet your tougher! wonder if i can write a longer blog than cheese. prob not! t was really good having a camp with those girls, but extremly tiring. doing like 28km a day . i even started to get blisters. willis says hi, and have a good trip to aus. enjoy your plane ride (planes are so cool!) we'd better go home, were at nana's house because dad had to go to hospital cause he hurt his leg water skiing. He tore his hammy or something! but he icesd for a while after he hurt it so it wasn't to bad.meaning he lay in the lake while the rest of the family carried on water skiing! he wasn't going to spoil their fun! hehehe so mean! yeah i wasn't there so i can't take any blame in abandoning him on the beach. oki'd better actually go now!
everyone at rowing is asking about you, and wishing you well.
love from the feasey crew
hello Sara
Sent you loads of healing vibes from the lake yesterday and had a nice time talking with Z & C, both had a go at boatholding...checking out the lads no doubt! They had a great finish in the double, you would have been wrapped with the strong last 500m they put in to pass 2 other boats. Giver and I been swimming in the lake last few days-so hot.
'Hope'(really like the Luther quote)your Aussie trip goes well.
love Chris May
best you get up front in the plane sara as you are the only one who knows where to go have a good day love and thoughts from us all at the bend in the river @237
Dear Sara, Sue,Rob and Kate
See how much you are loved! It takes ages to read all the blogs but worth it as we bloggers can feel closer to you and can let you know we care!
Your Aunt was cool to share her claim to fame! I'll have to try to make some but I doubt it will meet her standards. You will have to be the judge!
Caitlin didn't paint the full picture about Bill's icing his hamstring. He lay by the lake with legs in water. One was still in wetsuit so it didn't get too cold. John and Sue created a poor man's cabana from logs, water ski seat, sticks and towels so his body was protected from the sun. Wish we had a camera! Would have been good for TASmag!
John - your mailman - missed seeing you this morning but sends his love. Actually we are really curious to know what was in that large box from Granty!
Others have given you great quotes and stirring affirmations but I am not so eloquent! I can only, and sincerely, say again how much John and I admire and care for you all, have faith in your strength and determination to beat this and have you constantly in our thoughts.
Love Glenda
heya gurly.
lucki lucki goin over 2 aussie! still countin down them days until school :( i went down to the rowing the other day. i saw zoe. it was weird! havent realli been round rowing much since i stopped. but you never know, i mite just start up again... yeh one day (maybe). its been so hot in twizel town lately! it was like 40 degrez the other day! havent really been up to much, but thought id say hey and gud luck and all!! thinkin of you all the time dude! keep smilin :) :) :) :) :) :) :)
luv always, shaz xoxox
Wassup Whanau 2.0 and Sara (yea you get special mention, just this once...)
Figured it was time I did another blog comment, because its been long enough since my last one and therefore I cant be considered a geek. So your off to Aussie for a wee day trip eh? (*Cough* traitor) At least you'll get to watch a wee trans-pacific (Thats the big “lake” between us and -them-, I think....) movie and have airplane lunch (which I'm presuming can only be better than hospital lunch, especially with those wee plastic knifes so we can all be “safe”). Oh and spend a wonderful night in Sydney, cause we just know how much you LOVE cities :P
Lol, I'm feeling like a bit of a insomniac right now cause its 1.45 and I'm listening to Incubus, haha (Remember what Incubus means? You better, I spent a good 3mins looking it up on Google.). That and the computer is telling me that haha and lol aren't real words. Pfff, its obviously just not as hip as me..
Was good to see you all at the beach the other day, enjoying the umm, sand? So between fish and chips for tea (wasn't there a song about fish and chips we did for production once?), and some good ol' fashioned sunshine I hope you've had at least a bit of time to chill oot (that’s angry Canadian for ‘out’). Lol something at the beach managed to get the better of one of my legs 'cause its swelling up like North Australian Wooded Tree Frog (not that I know what they swell up like to be honest). It's quite amusing except for the tingly feeling in my toes lol.
My course starts in a week, I'm kinda nervous about starting a course at Level 6, but yeah (care to donate some of those spare credits to a poor and needy student? Please?)
Anyway that's enough from Me (yea I get a capital m cause I'm thpethcial (say it out loud ;) )
Keep it snazzy
The Povall Clan; Snert the Festively Plump, and Bilby the Bird of Prey (so what if he's only a budgie, can't a bird have ambition??)
P.S. Just read the latest post, best of wishes with all the surgery, we’ll be praying for you all.
Hi Sara and family Michele Burgess Walker here just wanted to say HELLO and thinking of you all .
KEEP STRONG , BE POSITIVE and give each other BIG HUGS allways and ever need a chat just call .A positive mind is a great heeler.
03(441-4599) TAKE CARE
Hey Sara and Young family,
Hope you had a safe and comfortable trip to Sydney today and that the scan went well. I've been checking the website everyday and was sorry to hear that you're going to have a rougher ride than first thought. Just wanted to let you know that I'm thinking of you everyday and sending good vibes! Mum's still praying for you and Libby says to say G'day.
I find that a good cure for feeling a bit down is a big bowl of ice-cream so make sure those nurses aren't stingy on the tip top!!
Take care and keep strong chicky!
Big hugs,
Amy :)
PS - Congrats on the most awesome NCEA results!
Hi Sara, Kate, Sue, Rob
Just to let you know that we are constantly thinking of you. We care, very very much.
"The first step to better times is to imagine them."
Love, Sandy and the redheads.
hey girl!
just mastered the art of using a computer, needed a bit of help though as i dont very often get past the on button.
hope ausi was good and you got back ok and didnt get harassed or anything as those austruckingfailians (and i allowed to say that with out offence?) Can be shifty!! good luck for tomorrow as your a tuf nut from twizel!!
it could be said that what your going through is a bit like removing a stain from your rowing shorts afer sitting under a tree (happened on saturday!), - the stain remover seems to take forever and stings when it gets in your eyes and is very frustraiting on a stubborn stain, but the reward of getting your shorts back as good as new and a whole heap tougher than before is rreally worth staying positive when theres a glitch in the stain removing process!!
be stong, be brave, with love and prayers, your soul mate kate.
p.s went to go to school yesterday, the principal was saying how one girl got 158 credits!!! so i pushed in and said excuse me mam my friend from twizel got 178!!! she was VERY impressed good on ya budspud!! xox
You wouldn't believe it Sara- it was 30 degrees today in Sydney- sunny, hot and sticky!! I know you won't believe me coz people always tell that you that the weather is better before or after your stay.
Today I wore my leopard skin top and got quite a reaction from John who growled at me. Nobody at work dared say anything so I'm safe there.
I hope Kate liked her tops - she will find it difficult choosing which one to wear.
All the best for tomorrow's operation and I hope you don't feel too groggy afterwards. You have a great sense of humour Sara- you are an inspiration!
Love Pip, John Petra and Nicole
All of us at the Lotto Shop send you our love and prayers. Been hot here but we are getting use to it now. Our thoughts are with you all
Liz & Crew
Hey Sara Hope you are feeling alright after your trip to Sydney.
We are thinking of you.
Regards to Sue Rob and Kate
Kia Kaha
Sonja, Swanny, Briar and Ellen
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