Keep in touch with Sara

Thank you and some reflections

2007-05-21T19:19:00.000+12:00

Sue,Rob and Katie would like to thank you for your wonderful support, help, words, friendships, beautiful flowers, generous gifts and all the love and hugs over the past year and especially recently with the heartbreaking loss of our precious darling Sara Jane.

"If I had a single flower for every time I think about you, I could walk forever in my garden"

Claudia Ghandi

Reflecting how it feels

Please, don’t ask me if I’m over it yet.
I’ll never be over it.
Please, don’t tell me she’s in a better place.
She isn’t here with me.
Please, don’t say at least she isn’t suffering.
I haven’t come to terms with
why she had to suffer at all.
Please, don’t tell me you know how I feel,
unless you have lost a child.
Please, don’t ask me if I feel better.
Bereavement isn’t a condition that clears up.
Please, don’t tell me at least you had her for so many years.
What year would you choose for your child to die?
Please, don’t tell me God never gives us
more than we can bear.

Please, just say you are sorry.
Please, just say you remember my child, if you do.
Please, just let me talk about my child.
Please, mention my child’s name
Please, just let me cry.

Our dearest Sara Jane

2007-02-17T15:00:00.000+13:00

Our princess Sara Jane, 18 years young, flew off from the Mackenzie Basin to be a beautiful angel on 16th February 2007 after an inspiring journey over the past year. Adored, cherished and loved, and in our hearts forever.

“He kotuku rerenga tahi” – a white heron of a single flight.

Fly in peace with all the aroha and light surrounding you that you brought to our lives, Mum (Sue), Dad (Rob) and Katie.

A service to celebrate Sara’s life and share our grief will be held at Twin Lakes, Glen Lyon Rd, on Tuesday 20th February at 1.00pm (please bring your own camp chair if you have one). If the weather is inclement, it will be held at the Twizel Events Centre. The theme is to wear something pink.

In lieu of flowers donations to The Child Cancer Foundation would be most appreciated, and can be made at or after the service.

From the Crawford Clan

2007-02-17T14:14:00.000+13:00

dearly loved and treasured granddaughter, niece, cousin and friend of Vilma and the late Bob Crawford; Robyn, Tracey and Lisa Garnett; Peter MacDonald and Peter Garnett.

Sara was an inspiration to us all – she grabbed life with both hands and made the most of every day. So much to live for, so open and giving, so very special to each of us.

From the Young Family

2007-02-17T14:10:00.000+13:00

beloved granddaughter, niece and cousin of Joan and the late Bruce Young, Ruth, Lothar, Katherine and Stefan; Hugo, Jane, Jim and Harry; Helen, Martin, Tama, Ru, and Tui plus many more relatives and friends.

An angel on earth and an angel forever in our hearts. Always the young spirit.

Once again some extremely sad and devasting news

2006-12-24T21:00:00.000+13:00

Dear everyone

We haven't posted a blog for a while and things had been going well until a month or so ago.

Sara became seriously ill 3 weeks ago and was taken to Chch from Twizel by ambulance on Saturday night. A scan on the Sunday showed that the tumour had regrown much larger than it had been previously and very different to a scan 5 weeks earlier that showed the tumour still shrinking and collapsing.

We are all devasted by this news after all the hope of the past few months and are trying to keep our lives together - there is no other treatment possible under the circumstances. We have been home for 10 days now after Sara spent some time in hospital and Chch while her condition was stabilised. Sara is now spending large amounts of the day resting and sleeping and being cared for by us and the local GP, district nurse, the palliative care team in Timaru with advice from the team at CHOC.

We are spending Xmas at home with family and are just taking each day as it comes. Sara is fairly comfortable most of the time now that the drug regime has been sorted and enjoys her awake time with us and the occassional visitor.

We haven't had the energy or inclination to do our usual Xmas letter but have really enjoyed all the ones we have been getting and the many other messages of support. A big thank you to everyone who has been supportive during the last few weeks especially since we have been home with meals and other gifts.

Sara is really looking forward to Xmas Day and she can't wait to open her pile of pressies under the tree! We are treasuring every minute we have with our precious and beautiful Sara Jane who still shines with her beautiful smile, a heart of pink and wonderful sense of humour.

If you would like to visit please ring or text first and keep your visit short for Sara's sake and to allow us the time we need with her as a family in the precious hours when she is up to having some fun and time together.

Arohanui to you all and we wish you all a happy Xmas.

Rob, Sue Sara and Kate (whose been visiting lots from her flat in town)

Heres da piccys!!

2006-10-05T13:27:00.000+13:00

Caitlin and Sara having a laugh in Wanaka on the ski week!

Farewell to Tracey and Lisa!

Peanut checking we've got everything!

My cat likes to hide in baskets!

Sara, WOW THE ONE AND ONLY CHEESE BABY aka Sarah VanB! There she is guys! Accompanied by her bubbly sisters Caitlin and Holly, sorry you got chopped off Hols!

Now in Melbourne out for tea with Robs cousin Susan, sorry about the lighting!

Navigating Melbourne!

Mum going nuts in a nut shop!

This is for you Granty, I tried to get a lil model one but could'nt!

Spring time, Birthdays and a Trip to Melbourne!

2006-09-27T20:35:00.000+12:00

Kia ora tātou!

Well I’ll start off from where I left it... Tracey and Lisa back home from England for a short winter visit…. so it was time to do some skiing! This time the ski trip was mainly based at Cardrona, a change of scene for us Young ones rather than the usual Treble Cone. Tracey and I, the great puzzle lovers, sought out a puzzle in Wanaka at Puzzling World, something to keep us entertained, especially Tracey near the end... It was a bit too hard for me! While the four of us were down in Wanaka Peanut (our cat) held the fort at home... well at least we thought that's what he was doing, but when we are gone, Peanut lives in the laps of luxury at our neighbour, Steph’s house getting much better food than cat food and a lot of love we suspect! Peanut has two homes you could say! Thank you Steph! We then had a trip up to Christchurch to say goodbye to Tracey and Lisa and see the doctor. While Kate had a few ski days at Ohau and Treble Cone.

While in Christchurch I finally managed to catch up with the one and the only, that famous girl CHEESE and her sisters! I'd like to point out that Cheese, AKA Sarah, has been a rock for me this year! The postcards, her phone calls and her txts are wonderful! Right now she is in Rome so I know she’ll be having a great time and some magnificent experiences. You’re a champ Cheese!

After seeing the Dr in Christchurch it was decided that we would go to Melbourne for another PET scan. From that scan I got another set of amazingly, exciting, jump up and down kind of news, I heard that my tumour had not taken up any of the tracer in my PET scan which means that it is metabolically inactive! Yahoo! We are now thinking about the next step. Very hard decisions!

We went to Wanaka for another ski week and some relaxation. I managed to go for a bike ride with Dad which was exciting for me to get back on my bike and go for a ride. We all had about four days skiing at Treble Cone the snow wasn't heaven every day but we did manage to get some days that were a lot of fun! It was great being able to spend time with some of the Feaseys on the mountain and off the mountain. We met a good friend, Chris in Queenstown on Kate's birthday and had lunch with him. The highlight for Kate of this trip was buying some new very PHAT skis!

We had another trip to Christchurch for Dads work and for me to go to the doctor for a rash on my legs. Finally I've managed to get rid of the rash that was driving me insane so I have had a spa!

On my ***18th*** birthday I went down to watch some rowing at Lake Ruataniwha, I was on a buzz down there catching up with all my rowing mates and watching them row. This was inspiring me to get back on the water sometime in the future. In the evening I went, with Kate, to the basketball party that was held at the Pukaki Lounge/pub. There was a great band playing, some of which I knew from working in Twizel last summer. When they found out it was my birthday the band and whole Lounge sang happy birthday to me, embarrassing but very special! Thanks Sam and Michael and all those that sang along!  It was a great party with some very OARSUM music! Rock on!

In between trips away I have managed to get into school a couple of times a week doing some art. Mum and I might be back up to Christchurch so I can see a friend of mine compete in a Trampolining competition which would be exciting to see!
I'll load some photos in the next few days. So there's the update on the Youngs adventures I’d love to hear some of your adventures so leave me a Blog.

Aroha nui

Sara and family

A LONG lunch to celebrate!

2006-08-12T20:59:00.000+12:00

Kia ora tātou!

Over the last few weeks I have been getting better and better and my drug cocktail has been reduced significantly. On Tuesday this week we were in Christchurch, I had a CAT scan and an MRI scan. Then on Wednesday as we travelled home we had some really amazingly OARSUM news, when the doctors told us that my tumour had decreased in size. It is now 4/10 of what it was at the last MRI scan on the 18th of April-one month after my radio treatment finished! He pai rawa atu tēnā – That’s fantastic! As we travelled from the Geraldine hills to Twizel we rang relatives and friends with my exciting news!

When we got home to a beautiful Mackenzie day we beelined to Shawty’s Cafe for lunch, shouted by me as a celebration! Our family lunch evolved into a gathering of many friends as school and work finished. Thanks to Troy for keeping the door open late and the yummy nibbles. We left our long lunch for a late dinner at Glenda and John's with lots of friends, music, singing and dancing till midnight. It was a very special day and celebration for me!!!

“I just can't stop grinning!” - Cheshire Cat -- Wonder and Aliceland – You’re my idol Caitlin (The Cheshire Cat!) This is the quote from a previous production I was in, and it is just how I’ve felt for the last couple of days!

Now we have to think about what comes next. I have been on a cocktail of antioxidants and immune building agents for the last 5 months. We will be continuing this and working on adding to it.
Meanwhile the oncology team are working on a proposal to undertake some heavy duty chemo. We will be discussing this with them sometime over the next fortnight.

The excitement doesn't end here for me as my cousins Tracey and Lisa have come back from England for a visit. So this week we are going down to Wanaka for some skiing. It should be great fun, I can't wait to see them!

I've had a great time writing this Blog because I've used the program Dragon Speaking Naturally that the school bought for me to help me as I cannot type very well with my hand. You'll see the picture of me at my lap top with my "McDonald's microphone" on below.
Haere rā

Sara

2006-08-12T20:00:00.000+12:00

"McDonalds Girl"

Kate and Sara at the party

Dancing time

Good things take time!

2006-08-01T22:15:00.000+12:00

Hi everyone

Its been a while since the last blog and our apologies for that - we will try and keep it up to date a bit more regularly, even if it is just briefly, as we have heard from so many people how they are still watching it!

We have been home for a month now and its warming up a little outside and we are all settling back into life in Twizel. Our little house was a bit frozen up on the morning of our departure from Christchurch- the last Friday in June. But the split wetback and water inside the house was all sorted when we arrived home later that day thanks to a great bunch of friends and locals.

We returned from a weeks skiing in Wanaka over a week ago! We all had a great time. The weather treated us well and Rob and Kate had 5 full days skiing at Treble Cone. But best of all Sara skied for three afternoons and on the last Saturday was seen seeking out the small jumps and some off piste snow! While were were there the snow conditions were fantastic and got even better on the Wednesday when 38cm of powder snow fell! So Thursday was one of those world famous TC powder days. In between skiing we did a bit of the coffee thing and just chilling out - well actually it was quite warm during the day!

We spent some time catching up with friends which was great and Sara got to spend quite a bit of time with her great friend Caitlin who is in Wanaka training for ski racing this winter.

Sara and Sue spent last week around home being creative and keeping the home fires burning amongst some walking. Rob went back to work for a full week interrupted by a visit to the dentist. Kate headed to Dunedin for the week to see her friend Anna and then came back to work at the Korner Kafe for the weekend. Robyn (Sues sister) and Mac visited in the weekend and skied at Ohau with Kate on Saturday.

This week Sara has gone to school for a couple of afternoons and spent some time in the Art room and meeting up with her buddies and teachers. She is feeling good, is still her bubbly self and while she gets tired has been quite busy and really enjoying being home.

We are off to Christchurch this weekend for a few days to catch up with family and some friends and do some town things!

Ka kite ano.
Sara, Kate Sue and Rob

Sara off to school yesterday

Wanaka Skiing!! Yahoo!!

2006-08-01T22:10:00.000+12:00

Sara and Kate

Sara skiing Triple Treat

The Young Ones at TC

Back in the Mackenzie

2006-08-01T22:05:00.000+12:00

Home sweet home in the snow!!

Lake Ohau and the Mackenzie from Ohau Snowfields

We've been everywhere..........

2006-06-21T09:04:00.000+12:00

We've been to Hamner, Kaikoura, Rarangi, Picton, Mistletoe Bay, Nelson, Marahau, Takaka, Totaranui, Collingwood, Puponga, Wharariki Beach, Farewell Spit, Pataurau, Pakawau, Parapara, Pohara, Queen Charlotte Sound, Wellington, Dannevirke, Norsewood, Otane, Hastings, Napier, Waipatiki Beach, Mahia Peninsula, Mohaka, Wairoa, Gisborneeeeee, Tatapouri by the Sea, Whangara (of Whalerider fame), Tolaga Bay, Tokomaru Bay, Ruatoria, Tikitiki, Te Araroa, East Cape, Hicks Bay, Waihau Bay,Te Kaha, Opotoki, Whakatane, The Mount, Tauranga, Rotten Vegas, Te Puia, Karapiro, Hamilton, Auckland, Whangerei, Russell, Pahia, Kerikeri, Mangonui, Opua, Oakura, Teal Bay, Helena Bay, Orewa, Remuera and Eden Park............and we shook the hand of the man who shook Johnny Cash's hand! And yes country music has gained an upperhand on this trip including Johnny Cash. We've been everywhere........!!

And we got to see lots of friends and rellies (unfortunately not everyone along the way), but for those who we didn't call on you were all thought of along the way! And now it is time to fly home after an amazing 8 week road trip...... its time to head home to Twizel with a few days in Christchurch en route.

There have been lots of highlights but some of the best were:
The Orca pod on the East Coast
The road trip around the East Cape in a great week of warm weather
Wellington with Jane, Mart and Zoe
The All Blacks Irish game at Eden Park in the rain
The Indian restaurant in Roturua (Tandoori Star)
Our time with Iain, Pauline and Anna in Auckland
Visiting Russell and seeing old friends from that part of the world and realising part of your heart is still there
Fish and Chips at the World Famous Mangonui Harbour F&C shop on the wharf
Sailing in the QC Sound with Robyn and Mac
Camping at Totaranui for nearly 2 weeks and all the visits from friends and sister Helen
Camping on the beach at Patarau

Lots and lots of wonderful times and memories amongst great places, and with friends and family. Thank you everyone for making the trip so special. We will always treasure it.

Haere mai and arohanui

from the Young Ones Sara, Kate, Sue and Rob

Still being gypsies and heading north!

2006-05-30T14:51:00.000+12:00

Hi everyone

We are just leaving Nelson after being here since Thursday with Mart, Jane and Zoe. We have had a lovely relaxing time here in Nelson despite the dampish weather. We all enjoyed the Crusaders game on Saturday night down at the local pub - Sara enticed Jane to watch her first rugby game in a pub! This one eyed brigade predicted a Crusader win of course and we have little sympathy for those who supported the losing side! We are looking forward to the continuation of the crusade next year!

As Aunty Haybale has reported we had a fantastic time in Golden Bay both at Totaranui and in and around the bay after we left there. Wednesday we took the trip up Farewell Spit on a beautiful fine day with no wind and views for miles. Thanks to Helen and Pam and Hugh at Totaranui for helping us have such a wonderful time in GB.

Today is a beautiful day here in Nelson and we are about to depart to Picton where we meet Robyn and Mac tonite, they are bringing some gear from Chch and we will be sending some home with them. Tomorrow hopefully we will go for a sail in their yacht Morning Cloud in the Sounds. Thursday we are taking the ferry to Wellington and road tripping onwards to Auckland and Russell (where we lived for three years and Sara was born).

The decision to go north has been driven by the Sara's need to continue her gypsy ways....... well we all have the bug now or have always had it........and we think we might get some warmer temps up there. And most importantly we are looking forward to catching up with some of our friends and rellies in the NI as well as checking out some of the favourite spots in Northland.

We plan to go by the East Coast - a place we have always wanted to do a road trip to and have never made it so we are hoping for some good weather! We plan to fly home to Christchuch from Auckland mid - late June, leaving the camper in Auckland.

Sara is doing well and enjoying the time immensely and been having lots of fun with friends and cuzzies along the way. We continue to enjoy the blog and comments ( Sara had a session reading it today) and the emails, cards and messages have given us great support.

Aroha to you all

Sara, Kate Sue and Rob

Our very sad news

2006-04-22T09:42:00.000+12:00

Dear friends,

While we were in Twizel for Easter Sara's condition deteriorated, so we returned home late on Monday. On Tuesday we saw the doctor in CHOC and Sara had an MRI scan in the evening. The scan has shown that the tumour has continued to grow despite the treatment and was the cause of her worsening illness.

On Wednesday afternoon we were given the devasting and tragic news that there was nothing more that could be done to cure the illness. Our time with Sara is now very precious. The steriod medication has been changed and there has been a marked improvement in her symptoms in the last 3 days allowing her some quality time during these precious months.

We are planning a family motorhome holiday around some of our favourite places in the South Island for the next few weeks, and all going well we will depart mid- week.

Thank you for all the support, text messages, phone calls, cards, visits, prayers and presents over the last few months they have been a wonderful inspiration for us, especially Sara.

We will continue to post the occassional blog on the site while we are away when it feels right and the chance is there.

Love to you all

Rob, Sue, Kate and Sara

Home to the Mackenzie for Easter

2006-04-15T21:45:00.000+12:00

Hi everyone

We travelled home to Twizel for the Easter break on Thursday. A beautiful day and great drive back home. The first time we have been home for a stay for over 3 months. Sara has been very tired for the last few days (both here and in Christchurch) and has been resting and sleeping lots. She has seen a few friends while we have been here but we are all just taking it easy and enjoying being home for a few days. We did have a meal out at Shawty's on Thursday evening which made us feel like we were really home.

A week ago we had a discussion with the oncologist Dr Rob Corbett about the analysis of the last MRI scan. He told us that there are indications that the tumour may have enlarged despite the radiation and chemo treatment of the last few weeks. This was devasting news for Sara and us and we have had a very emotional week. As a result we will be travelling to Sydney for the another PET scan - hopefully this coming week. Until we get the results of that we will not know where to next with Sara's treatment.

Kate arrived back on Sunday safe and well and has been telling us stories of her travels all week. We have been giving her a hard time about her acquired accent and she has also been entertaining us with her new liking for country music. She is working this weekend at the Korner Kafe in Twizel and plans to go looking for a job at the local cafes in Sumner when we return there.

Sara has solved her bath problem for the meantime by using a soft mat given to her by Aunty Robyn or a Z-rest sleeping mat discovered in the garage at 211 Mackenzie Drive! Sara enjoyed all the wonderful suggestions and discussion on soft baths - maybe an opportunity for someone to completely redesign the bath!

Thanks to everyone for the continuing support, messages and visits, when we are able to see people. Also a big thank you to all those who organised and contributed to the Support Fund in Twizel. We have recently received a cheque from this fund for $1400 which has paid for Sara's laptop. We feel very grateful and really appreciate this generous gift from our home town and all our friends there. We feel very humbled by your kindness - thank you so much.

Warm regards

Rob, Sue Sara and Kate (back in NZ)

Bath time

2006-04-06T21:29:00.000+12:00

Sara is just off to her bath and complaining about how hard it is. Why do they make baths so hard? They should be like a big squishy pillow she reckons "I ALWAYS thought that". I have been instucted to measure the bath so she can go to Para Rubber tomorrow to get something big and soft to put in the bottom of the bath to lie on! Sara is thinking of a thick bit of sponge.

Does anyone out there have any good ideas for making baths soft! "This is a serious matter" she says "I have this problem EVERY night!"

THE BIG SOFTEE

A few hard days for Sara.

2006-04-06T21:10:00.000+12:00

Hi everyone

So what's up so far this week?

Sara has been very tired and resting lots but having a bit of a tough time emotionally, the last few days. While she enjoyed the great success of Zoe and Caitlin at Maadi it has understandably made her reflect again on how different life is at the moment for her. This has been very emotional for her (and us) as she rides the rollercoaster of this huge change in her life and all the uncertainty it brings.

At times reading the blog this last week has made life very hard for her so we have been doing a bit of judicious management of what she sees and have now put in place the blog moderation system while we get through the next few days. This means that blogs don't get published until they have been seen by the blog administrator (ie me!). Hence a number of the bloggers over the last day or so haven't been able to see the blog appear on the site straight away. I promise they will appear on the site but not immediately - provided we think they will be a positive for Sara.

The blog has been a really positive thing for her and us and we know everyone enjoys using and benefiting from it. We wish to keep it like that, so thanks to everyone for all the positive stuff that we and everyone else has been enjoying.

Thanks and hope you are enjoying the new photos - and keep blogging!

Warm regards, Rob and Sue

Sorting out the car to go with the sport!

2006-04-04T22:35:00.000+12:00

Sara with the the Canterbury Rams.

2006-04-04T22:08:00.000+12:00

Sara's Radiotherapy Team, Kylie, Miranda and Anthea on the last day 2 weeks ago

2006-04-04T18:48:00.000+12:00

Whats been up and down at 78 Glenstrae this week.

2006-04-01T22:17:00.000+12:00

Hi everyone

Well the news of the week has to be the gold medal win by Caitlin and Zoe at the Maadi Cup reggata. Fantastic for them and everyone involved and undoubtedly the highlight of Sara's week. She got to watch it live by computer feed at the Salamander Art Gallery, courtesy of Anne and Bob - the visitors to the gallery were treated to a slightly milder version of the Maadi 2005 rock band but just as enthusiatic and even more wrapped that her buddies won this year! Hey you girls and all the coaching and support team what a result - fantastic, a testament to all the dedication and hours on and off the water - congratulations from all the Young Ones!

Last weekend was an exciting one for Sara and the Rams versus Nuggets game was great. Sara got to meet up with the players after the game including the American imports and get a few photos and signatures. The neatest thing about the game was meeting our long time friends Owen and Debbie Rees outside the Westpac Stadium and finding out that their son Ash was a Ram!

Unfortunately just as we almost reached home after the game, Sara had another seizure and we literally U turned in Ferry Road and went direct to CHOC. This one lasted quite sometime and was very scary for all of us. Sara spent 2 nights in hospital (with Sue staying over) and came home late Tuesday after another blood transfusion. Her medication has been altered and hopefully she doesn't have another episode like this for a while. She has been very tired as a result all week, and it has been very quiet for all of us since other than the rowing and a visit from our friends from Pleasant Point, Bill and Maureen Wright on Thursday (Bill was the Ranger at Kerikeri when I worked in Russell).Debbie Carter visited Sara for a couple of magic healing touch sessions at the hospital and at home later in the week - thank you Debbie.

Today was a beautiful day in Chch and we just enjoyed the day in the sun and Sara walked down to Redcliffs for some fresh air- her first real exercise for some time - she really enjoyed it. The day got even better courtesy of the Crusaders (yes I had to cruise to the local tavern to check out the second half) - they still rule eh Bob, Clare and Mark! It's not too late to finally admit that if you live in Canterbury you might as well join the winning team. After all this was the 14th win in a row!

Sara currently has a very low immunity level so please don't ask to come visiting if you think your getting, have had or had recently (ie in the last week or so) any bugs or colds or been in contact with anyone with anything infectious like this. Thank you and have a good week.

TTFN
Sara Sue Rob and Kate (on a road trip to the Carlsbad Caverns National Park in southern New Mexico)

6 weeks of treatment completed!

2006-03-25T07:49:00.000+12:00

Hi everyone

The last 2 days Sara has spent enjoying the fact that it was a weekday and that she didn't have to go to hospital! Yes, Sara finished the treatment regime for the first 6 weeks on Wednesday with a round of chemo and a blood transfusion which meant we didn't get home until late. Mac McNamara visited with Sara during the evening while she was having the transfusion and it was great to see him and have a bit of a catch up.

Sara is doing well but is still getting tired and resting quite a lot. She has come through this first treatment phase very well and the staff at the hospital are very pleased with how she has done. Many, many thanks to all the staff involved with Sara's treatment over the last 6 weeks in both radiotherapy and CHOC - we have all felt well supported by the friendly staff.

So Thursday and Friday were relatively a quiet couple of days for Sara, but there is a bit going on this weekend! Friday afternoon Caitlin visited Sara and stayed for tea with Sue and Willis. It was really good to see some more Twizel friends and fantastic for Sara to catch up with Caitlin, just talking and having fun. Sara also got the other part of her Twizel rowing kit - a peaked Maadi 2006 Twizel colours cap personally delivered by coach Dean! The evening was finished off with the close match between the Tall Blacks and the Aussies - what a great game and cool to watch. Yes, basketball is the big game in Twizel and Sara is a keen player so she stayed up to watch the game.

Today has been a busy R& R day. Rob got up early and started this blog, then got distracted and went off to check out the surf while the girls caught up on some zzzzzzzss. Hugo, Jane and Harry visited around lunchtime and we sat and talked and watched the yachts having a sail on the estuary. Kate rang and we all talked with her which was great - she only has 3 days of work left and will be home two weeks tomorrow. Tonight we had tickets (courtesy of the Child Cancer Foundation - thank you Cynthia) to the Warriors match. We have just got home from that and Sara had a great time especially in the second half when a lot of the action was down our end. It was fun despite the fact we haven't really watched it before and certainly wouldn't choose it as our mastermind topic!

Tomorrow we have Aunty Haybale - Helen (Rob's sister) and friend Henry Kavale visiting from Twizel. We also scored some tickets to the Canterbury Rams / Otago Nuggets basketball game at Westpac stadium, so we are off to that in the afternoon. What with a bit of Games watching it really is a weekend of sport! Yes Bob, we will be cheering for the Rams, with our Canterbury blood!

We are on at least a 2 week break now from any treatment but will be staying around Christchurch for the next few days as Sara has a blood test, a possible transfusion depending on this test and healing touch and art therapy on Monday and Tuesday. The oncology staff are in the process of working out the plan for the next phase of treatment during this break. So, we are going to just enjoy the free time over the next couple of weeks and take it as it comes.

Enjoy the rest of your your weekend, whatever it may bring - and good luck to our Twizel rowers, Sara is there in spirit even if she can't drown out the rock band from the sidelines!

TTFN
Sara Sue Rob and Kate ( in the powder at Angel Fire)

Friday night - a few photos from the last few days!

2006-03-17T19:52:00.000+13:00

Hi everyone

Just posted a few photos from the last few days. Enjoy.

Sara has had a good week, all straight forward and routine with a blood transfusion yesterday. We are ready for another weekend and some R&R. Only 2 radios and 2 chemos to go and this 6 week treatment period is finito! The next stage is still to be worked out but we should know more about it next week!

Off for another wine!

Catch you later

Rob. Sue and Sara

Sara and nurse Sam and Sara's latest wig - cool eh bro!

2006-03-17T19:46:00.000+13:00

A visit from Clare and Mackenzie!

2006-03-17T19:15:00.000+13:00

Sara's Orchid - a few people have wanted to see this - here it is just beautiful like the girl herself!

2006-03-17T18:54:00.000+13:00

More than a week of news!

2006-03-13T09:19:00.000+13:00

Hi everyone

Another weekend has gone by and we had a very relaxed time with lots of rest for Sara. It has been cold here in Christchurch for the last couple of days and its another cool one this morning, so a lot of time spent inside. Alan Gleave came over Saturday night for dinner and Sara and Alan enjoyed some time together including watching a movie. She enjoyed hearing about the rowing results from Twizel during the weekend, both from the bloggers and texters and on Newstalk ZB - well done to Caitlin and Zoe for the fantastic results - no doubt a little disappointing that Sunday's races were cancelled. Sara wore her rowing top on Sunday as a good luck charm but it obviously didn't work a treat!

Sara had her best week last week since before the start of radiotherapy. She was feeling much better and the medication for the various side effects seems to be working well. Thursday's blood transfusion which went smoothly, was also a positive step after the previous one where she reacted to the blood. Following the blood transfusion, which was being given to raise her haemaglobin levels (dealt to by the radiation treatment) she felt much more energetic.

On Friday, Sara reached the three quarters mark for the radiotherapy treatment, she now has only 7 treatments to go to complete the 6 week treatment. Friday afternoon we finished at the hospital and then went into town for a bit of retail therapy for Sara and then had a meal out together.

Sara had another healing touch session with Debbie Carter during the week and this will be a regular event for the next few months. She is really enjoying this session and Debbie is great with her and helping Sara feel positive and giving her lots of strength and ways to take her through the radio and chemo side effects. While the radio and chemo are dealing with the disease the healing touch along with the relaxation and meditation sessions from Nicki are allowing Sara and us to take a more holistic approach to healing Sara.

The week was busy with the routine things like the daily trip to the hospital for radio,plus the chemo on Monday and Wednesday, visits from the OT and dietician and the healing touch and relaxation sessions and an art therapy session. We also finalised the antioxidant treatment for Sara with CHOC and Dr Ted Pearson and visited Cynthia at the Child Cancer Foundation. The Foundation have been fantastic in helping us with information and funding some of the additional costs we are faced with - a big thank you to them from us. And Cynthia gave Sara a box of bubble gum for jaw exercises which Sara is very excited about! Plus she also got a Gallaz cap signed by Silver Fern, Vilimaina Davu - how cool is that!

On Friday we had a meeting with Clare (Sara's art teacher from Twizel), Art Therapist, Diana and the Regional Health School teacher Sarah to discuss the art units which Sara will work her way through over the next few months, when she feels up to it. It was great to get everyone involved together and Sara feels really positive about doing some art. The art therapy with Diana has also been really helpful in helping her cope and deal with things in a holistic way.

It was great to see Clare and Mackenzie on Thursday and Friday and Sara really enjoyed spending time with her nearly 3 year old friend. We hadn't seen Clare and Mackenzie since December.

Kate is enjoying some powder snow at last but only has 2 weeks till closing date. She is hoping to take a trip up to Colorado before coming home on the 10th April.

This week all the treatments are in the afternoon so its relaxed mornings for all of us this week.

Thanks to everyone for all the blogs, texts and cards and pressies - they continue to be an inspiration and provide great pleasure to all of us, especially Sara.

TTFN
Sara, Sue Rob and Kate (in NM)

Photo time!

2006-03-08T20:03:00.000+13:00

Hi everyone

Just loaded a few more photos from the weekend. Will post a few words tomorrow - time to head home and pick up Sara and Sue from CHOC where Sara has been getting a blood transfusion. She is going OK but very tired after a long day which started at 8.30am this morning. Catch you later.

Rob, Sara and Sue.

Reuben Thorne signs the cap and the collection of Crusader souvenirs and signatures!

2006-03-08T19:51:00.000+13:00

CRUSADER TIME - Dealing to the Blues!!

2006-03-08T19:37:00.000+13:00

The thrill of opening some pressies in the weekend!

2006-03-08T19:26:00.000+13:00

Friday again................

2006-03-03T17:34:00.000+13:00

Hi everyone

Sara here .....Just put a few photos up from this week - hope they make you smile ...we had fun doing them! I especially likes the photo of DAD playing playstation in CHOC! ROB YOUNG PLAYING PLAYSTATION........even I don't know how to play playstation. Pity he had to get a lesson from the CHOC expert......... 6 year old Eddie! I'm looking forward to a red and black facepaint for tomorrow night! Go the Crusaders!!!

Love
Sara

This weeks hairstyle and ...........mugshot!

2006-03-03T17:27:00.000+13:00

The bloggers from radio with Sara (Anthea and Miranda), Tania and Sara sorting out the chemo........and meanwhile Rob has found a playstation!

2006-03-03T17:16:00.000+13:00

Sunset from Redcliffs.................and Sara in the "golden" sandpit.

2006-03-03T17:10:00.000+13:00

The weekend came and went.........and some good news!

2006-02-28T17:56:00.000+13:00

Hi everyone

We had a great weekend and managed to stay away from the hospital all weekend! It was very peaceful for all of us and we were able to enjoy some great weather at home, here above Redcliffs. Sara had some restful time interspersed with some visitors, visiting her Nana and Grandma and phone calls. Thursday and Friday were pretty busy with hospital things, sorting out some school stuff, seeing Diana the Art Therapist, getting hairstyles updated and getting an MRI scan done and meeting with the oncology staff at the end of the day.

Yesterday we had an early start to be at the hospital at 8.00am for Sara's chemo, but we did get home early in the afternoon and Sara was able to rest till dinner time.

Today we have been in for the radio treatment (#15 - we are halfway through the radio now - which is a real milestone). In a further 5 radio treatments the whole CSF system radiotherapy will be finished and it will then be focused on the tumours for the final 10 treatments. Sara also spent some time with Diana, visited her friend Paige at Ronald McDonald House who is also being treated for a brain tumour, and then went to see Nicki for some relaxation and meditation to help her with her sleep and rest. And then it was home mid-afternoon for some rest.

The MRI preliminary verbal report from Mike Sullivan on Friday gave us some very good news. The second tumour hasn't got any worse (which is very good news since it is an aggressive cancer) and the radio and chemo treatment appears to be having some effect upon this tumour with the preliminary view of the scan showing some positive signs. This is great news but of course we know there is still a very long way to the end of this journey. This was the best news we have had since the 6th January and it was nice to be able to soak it up over the weekend and share it with family and friends personally. We are awaiting the radiologist report which we should get tomorrow.

Tomorrow there is a hearing test, more chemo and radio and a healing touch session. Tonight we are enjoying a wonderful Canterbury evening following a wild storm last night and have Robyn and Mac coming for dinner (roast chicken - yum yum!!!). I hear Sara stirring down below so its time to go!

TTFN
Sara, Sue Rob and Kate (in NM)

A quick blog

2006-02-24T19:07:00.000+13:00

Hi everyone

We are at Robyns for tea and have just posted a bunch of photos. Hope you enjoy them and have a smile for Sara. We've had another long day and will be heading home for a restful weekend very soon - the week has definitely got better as it progressed and Sara is feeling much better but tired tonight. Sara is hoping to blog something over the weekend.

Have a peaceful weekend and will talk soon. Time for a beer!!!!

TTFN

Sara, Sue, Rob and Kate (in NM)

The before and after - so last week and so this week!

2006-02-24T18:57:00.000+13:00

Checking out the wigs with Christine this week - which hairstyle today???

2006-02-24T18:44:00.000+13:00

Early morning tranquility of home, Ruth and Sara with some healing touch and time for Ruth to fly home - the whanau says TTFN

2006-02-24T18:28:00.000+13:00

A get well letter from Hugo, farewell to Kate and jigsaws in the waiting room at radiology

2006-02-24T18:17:00.000+13:00

Its Wednesday again..........!!!

2006-02-22T08:21:00.000+13:00

Hi everyone

Well its been a long and busy few days and blogging hasn't been high up the list! The first stage of Thursdays blood transfusion went OK - second unit not so good when Sara had an allergic reaction about half an hour into it. This resulted in the transfusion being stopped and meds being administered to sort out the reaction. This was done within a couple of hours and we were off to radiation just a little later than scheduled.

Post the transfusion, Sara felt much better, as expected, late Thursday and Friday. So late Thursday afternoon we went to look at wigs and do a little shopping. On Friday we went to the radiation treatment, had meetings with the dietician and the Canteen organiser, Koral. Sara visited the art therapist, Diana, around lunchtime in the art room and spent her time in the sandbox. We had a couple of quick visits from Mac and Anne and my sister Ruth before heading home and having a barbecue tea with John and Glenda who were staying the weekend in Christchurch with us. A very busy couple of days.

Sara was very tired on Saturday and slept all morning. Later that evening we were back in hospital after she had another seizure like episode after dinner. It was a very fast dash to the hospital around 10.00pm, up Ferry Road as her condition appeared to worsen. She was admitted to the Childrens Acute Assessment Unit as CHOC was full. So another night in hospital on Saturday night with Sue and I staying over and then she stayed on right through Sunday and Monday while they sorted out the medication for what is suspected to be radiation induced swelling. By Monday she was back to her more normal self but still very tired.

Treatment (radio and chemo) continued on Monday as scheduled and then Sara had a side trip to Glassons on the way home. My sister Ruth came and stayed the night on Monday, (after spending the weekend at the family bach at Bealey with Mum, Hugo, and Harry) and we had some healing touch and massage sessions on Tuesday morning before she winged her way home to Canada last night. We all went to the airport to say our farewells and wishing she could stay longer. We will miss her lots, but I am sure Lothar, Katherine and Stefan can't wait to see her home in Kitimat on Thursday!

We have had a couple of chats with Kate and she is having fun and enjoying a bit more snow. She got promoted to ambulance duty the other night so got to ride into Taos as an ambulance officer!

We have more radio and chemo today (day 11 - Sara is one third of the way through the radio)and Sara will be spending lots of the day sleeping as the radiation tiredness has really set in. Later in the week another MRI scan is being scheduled to check up on the reasons for Saras episode on Saturday night.

Thanks everyone for the continuing stream of messages, cards and little suprises for Sara. They certainly help to lift the spirit. Please continue to phone before visiting and as Sara gets more tired we will probably have to restrict the visiting more so she gets to sleep and recover between the radio and chemo sessions.

Love from Sara, Sue and Rob

A short bed in hospital on Friday night and the new hairstyle!

2006-02-16T19:13:00.000+13:00

An update on the last 3 days.

2006-02-15T21:09:00.000+13:00

Hi everyone

Since Sunday afternoon Sara has improved and is now back to eating and drinking more normally and has had little nausea until tonight. She is very tired tonight after a couple of big days at the hospital etc. Today we were in for the first of her bi-weekly chemotherapy treatments over the period of the radiation (every Monday and Wednesday), the daily radiation and meetings with the dietician and doctors etc. When we got home at 6.30 we had a quick chat with Kate who is about to start her working week.

Last night Ruth stayed the night and cared for Sara while Sue and Rob went out for a Valentines Day treat at the Teppin Yaki Bar at the Crowne Plaza. Sara and Ruth enjoyed watching "Finding Nemo" - not sure how many times Sara has seen it - twice this week!!

On Tuesday after a visit from Mart Heine in the morning who was en route back to Nelson from Dunedin (great to see you Mart), we spent a large chunk of the day at the hospital too. This included a visit to the OT where Sara cooked up some stuffed potatoes by herself to check out her motor skills for this sort of task - she passed with flying colours but the arm has been a little bit tired since. The stuffed potatoes were very yummy. Lunch with Anne Munro and then we had a meeting with the CHOC staff in the afternoon to discuss the chemo and the radiation treatment.

The nausea has been largely under control since Monday when we had a more relaxed day. Monday was also busy with Sara having her haircut (it looks fantastic and we will get some photos up again soon when we have some time), a bit of shopping and a meeting with the consultant radiologist and the daily radiation.

Tomorrow we are back in the CHOC ward at 10.00am for a 3 hour blood transfusion as Sara's haemaeglobin count is down following the radiation. This is par for the course and regular blood tests are carried out to check on various effects of the chemo and radiation. We were told tonite that following the transfusion she will be bouncing off the walls - watch out! Followed by the radio and a visit to the Art Therapist.

Well a very factual rundown tonight - its time to run for bed and be ready for an earlier start in the morning.

TTFN
Sara, Sue and Rob

Its been busy and an up and down few days for Sara

2006-02-12T08:19:00.000+13:00

Hi everyone

Back to blogging - apologies for the lack of updates in the past few days! We have been very busy the last few days with the kidney function tests on Thursday, and visits from the art therapist, social worker and OT on the same day and the radio at the end of the day. The radiotherapy has made Sara very nauseous despite the NASA medication (the anti naus drug she is using was designed for astonauts to use in space!). So we are benefiting from the space programme on 2 fronts now with this and the titanium plates in Saras head.

Friday was also a busy day with a brief visit from Barry and Jude (friends from Wanaka) while they were in town, Sara visiting Nicki for some more meditation training and then seeing the oncology consultant and doctors before the radiation to try and sort out the medication for the nausea and discuss the longer term plans for Saras treatment. We finally got home around 7.00ish after picking up a beautiful present for Sara from her Uncle Peter (Garnett)- an orchid which now graces her bedroom - thank you Pete, she loves it.

However we were not home long. As a result of the effects of the radio and Sara getting more and more nauseous and finally getting very sick over the next hour or so she ended up back in CHOC for the night on Friday. Fortunately my sister Ruth was here and was able to comfort Sara while Sue and I sorted her and Sara for the overnight stay. They stabilised her condition very rapidly with a drip and she had a comfortable nights sleep with Sue staying over ( there is a parent bed in each room as well) and me heading home for a midnight feast of pizza. Thank you to the wonderful staff at CHOC and especially the nurses on duty that night for the very prompt attention on arrival.

Sara spent most of yesterday in Room 2 at CHOC but by mid afternoon was feeling like eating a little again and on top of the nausea. Her medication has been altered so fingers crossed it will reduce this side effect. She has a respite from the radio until Monday afternoon and while still very tired yesterday afternoon was returning to old self again and having a few smiles. She spent some time just lying around and having a spa before heading to bed early.

Last night I headed off to the Super 14 match with Ruth and cousin Harry. We had bought tickets for all the Young Ones but with Sara not up to it (she was going to do the full face paint job) we found some very willing Crusader supporters. There were a few lonely O-T-A-G-O.... yells from the stands but nothing really too intimidating. By the way Bob did you hear the joke about the little boy, or did we hear it from you?? - something to do with his Mum and Dad beating him up and he decides he doesn't want to live with them and decides he will go and live with the Crusaders because "they don't beat anyone". Ah excuse me ... who beat or should that be thrashed the Southern men last night.....again. Maybe you will be eating Vals pies on Monday.....again.....and yes Val I know you will be rubbing it in....do some for us!

Just to remind you Bob - for the record (courtesy of the Press - that fine upstanding Christchurch paper) the Crusaders have not lost at Jade Stadium in almost 2 years (maybe thats why only a few Highlanders supporters turned up) and its five years since they ("the C-R-U-S-A-D-E-R-S") went down to the Highlanders and how many Super 12 Finals have the Crusaders made and and how many have they won????? Yes, it's a new name but the same mission, and despite Split Enz "History Will Repeat Itself!"

Kate is back in Angel Fire and starts work today - she had a great trip back and did a great job of getting herself through all the airports etc. but there is not a lot more snow!

Today its a beautiful Canterbury day here at Redcliffs and will be a restful one for Sara, so please no visitors without phoning first.

TTFN
Sara, Sue and Rob.

Hey its good to be back home again.......

2006-02-08T23:19:00.000+13:00

Hi everyone

Another quick one before stacking the zzsss. Sara is at home tonite still quite affected by the op and anaesthetic etc but she did watch a DVD before going to bed at 10.00. She had her first radiotherapy treatment this afternoon - this one took about an hour but once everything is sorted the appointments get down to 20 mins. We have another busy day tomorrow with some baseline kidney function tests which take most of the day at 2 hr intervals, the second radio treatment in the early afternoon and some other stuff.

Kate has safely touched down in the USA and found her way through LAX and to Alberqueque (spp??? - to late to check!). We have been texting her all day and spoke to her briefly in LA. She got it all sorted and is just fine (other than leaving her fav T shirt behind - there have been a few texts on that one!).

Anyway many thanks for all the messages etc in the last few days - they have been great and make for wonderful supportive and light relief when we read them and read them to Sara.

TTFN
Rob,Sue and Sara

Brief update at midnite

2006-02-07T23:53:00.000+13:00

Hi everyone

Just a quick one for those wanting the latest.

Sara is in the CHOC ward tonight with Sue staying over. She is getting back to the old smiling Sara but had a bit of a rough time post op with the anaesthetic reaction. Just left her consuming a lemonade iceblock and thinking about a few more during the night. The op did not start until midday (later than originally planned) and her radiotherapy start has been delayed until tomorrow provided she is all OK. She will come home tommorrow everything going to plan

Kate left for LAX tonite at 10.00 so she is winging her way back to Angel Fire for the next 8 weeks. She was a little nervous about the prospect of travel by herself and getting around LA airport. But she will do just fine.....as she always does!

Time to stack some zzzzzzzzsssssssssss..........

TTFN
Rob(at our Chch home), Sue and Sara (in the CHOC ward) and Kate (on NZ18)

"I SAY HELLO" - The Beatles

2006-02-05T19:51:00.000+13:00

HEY HEY HEY!!! Wow-wah.... so wots bin hapinin with all ma buddys from all around da world.... didnt know I had so many friends a!!!! HEHEHE!! Hope everyone that is reading this is living it up and loving each day!!! Today I had a great day!!! Havent really done much, but just been... well doing stuff... hmmmm .... wat have i done??? .... OH no Im not asking you guys ... I'm um... talking to myself... HAH Shame!! Ok Ok Ok back onto the topic ... I'm so bad at that I always just go off the topic and forget my story... did i used to do that in english Mr Grant?? I think i did!! hehehe. haha there i go again.... SSOOOO .... today i ... (hehehe dont ya just love my "dot dot dot's"... I do!) ... today i slept in...mmm SOOO good to have a sleep in... then at twelve went in to hospital for the Bone Marrow booster injection thing... man it sounds like ive had a very UN-eventful day!!! Nah there is more and it can only get beta... cos CHEESE came round!!! hehe finally we LET her come for a visit... hehe it was great ta c ya cheese.. must be more GUD TYMS to follow ae!! Im sure there are lots of people that are hangin out to meet this girl.. maybe we could have a "Meet Cheese Day - be sure to be entertained by the garrulous girl" (check it out Mr Grant its alliteration!) So anyhow.. we've had dear ol Tracey Scott here for tea tonite... Lotsa fun and i got to do a Wasgij (Jigsaw) that she gave me, two times.. cos it had writing on the back!!! Had spag bowl for tea ... mmmmMMMmmmmmmm!!! So thats my day and a whole lot of rubbish in between!! Speaking of useless blah blah.... hey Kate me 'ol soul mate guess wat i can do .... TYPE the whole alphabet backwards... zyxwvutsrqponmlkjihgfedcba...haha im sure ur skill is far more impressive!! hehe still that's impressive for a kack hand!! Oh and by the way Mr Grant I totally agree the Roget's Thesaurus is ... NOT HELPING ME WITH THIS BLOG!! Its like back to front!! It's just random they put words in whereever they want... and don't worry I did listen to your instructions to not buy a Rogets its just, thats what kind there is here sittin beside me!! John or Glenda you'll have to show me how to use it!!

So anyway id just like to say THANK YOU THANK YOU THANK YOU!!!! I dont know what else to say and as for this thesaurus its not going to help me find another word for thank you -- ITS SOOO CRAZY!!! So, a HUGE Thank You to everyone that has, in some way helped my family and I (Take note of the english Mr Grant (and I!!!) so far, thanks to all the bloggers it is so much fun reading them, and all the emails, all the gifts people have sent/given me, all the charms people have sent me for my charm bracelet TOTALLY LOVE THEM!!! The huge photo board from Sez, Monopoly Board from Granty and the HAT ... better explain... Day before we went to Oz huge cardboard box arrived from Granty message inside card was "Oi Trapdoor, We hear that silly hats are the 'New Black' for those embarking to Sydney. (particularly for those with unusual haircuts!) We double dare you to wear this onto the plane and get some inane photos of yourself as proof. Get yourself back soon!" So I took up the dare and the proof is on the site. OK there is too many people and things to acknowledge and thank, so thank you for all your wonderful thoughts, gifts and inspirational words. I really do appreciate everything. It sure brightens my days! Like shunshine raysh!!! (Just say Sunshine Rays with a lisp and you'll be sounding like Sylvester and you're sweet!)

GTG 2 bed very tired this is a late night for me!
Have had lots of fun doing blog - will stop being garrulous (time for a new word Granty!)
Will be tucked up in bed with my book The Meaning of Liff!
Sezzle xoxoxox
PS so Cheese is this longer than you can do? Hmmmmmmmmm - we will seeeee!!!!
"YOU SAY GOODBYE" - The Beatles

The Late one that didn't work! Been busy having fun!

2006-02-05T11:09:00.000+13:00

Hi Everyone

Well you will be pleased to know that Sara felt like yesterday was one of the first days since a month ago (yes it is a month yesterday since we got the news) that she had a whole day of some real fun. Yesterday was the first day for a while that we haven't been full on with hospital type things for a little while. A sleep in for Sara and a late breaky and then off to hospital for a 10 minute job to get her bone marrow hormone stimulation injection. She has one of those each day until Tuesday -fortunately for her and us they happen at 12.00 noon each day which means Sara gets lunch when she makes the visit as well as the injection! They are meant to make you feel a bit flu like but so far that's not happening - fingers crossed!

Then we went off to the Gardens Cafe for a lunch, first for the rest of the Young Ones and a second for Sara (the first was small!). Sara met up with her good friend Sarah Prattley for part of the afternoon taking in the gardens and Art Centre for some street performance watching and some shopping at the stalls. We also visited Anne Munro at the Salamander Art Gallery before Sara headed off to her Nana's for a rest and a look at the lovely art book - thank you Salamander!

Kate heads back to the USA on Tuesday night so we are making the most of the time left over this weekend for the little "big sister" and big "little sister" to spend time togther. Kate is keen on a barbi before she heads home so maybe tonight!

So it is 3 days of near normality and family time. Kate has done a very artistic and creative job on Sara's diary and scrapbook which is progressing towards being up to date! Last night Sara and I had some fun setting up a laptop for Kate to take back to the States, so we can talk and email easily.

Sara is still getting tired after a few hours on the go but is definitely feeling a bit better with each day. After the op on Thursday she was a little sore (laughing very painful!) on Friday but feeling a lot better Saturday. While in that drowsy stupor after the op Thursday Sara was laughing about something and I commented it was good to see she still had her sense of humour, the response was "Dad, they can't operate to take away your sense of humour". So true and how silly of me!

She has now moved from Ward 28 to the CHOC ward where she will be for the next phase of treatment. We are still awaiting the final interpretation of the results from the PET scan done in Aussie but the preliminary indications are that it will be very useful in targeting the treatment area for the radiotherapy.

Tuesday is a big day with the other op happening (bone marrow harvest, lumbar puncture and porta cath) first thing in the morning and then in the late afternoon the radiotherapy is starting........... and that evening Kate departs direct to LA from Chch.

Today there are a couple of friends visiting but it will generally be a laid back day and hopefully we will see a bit of sun (hmmm not looking promising right now through the rain, wind and cloud!). Monday we look forward to another relaxing day. It feels kind of nice to have this little break in the process before we embark on the next bit.

We are glad everyone is enjoying the photos and we continue to enjoy the messages on the site, emails and cards. Thanks to the rowing team for the beautiful flowers and balloon, the flowers were very timely as the previous ones had passed their use by date and we were very reluctant to throw them out! We would also like to acknowledge the support we have received from the Child Cancer Foundation especially the funding of the third airfare to Sydney.

If you are intending to visit then please call Rob on 027 223 4546 prior to visiting just to check that it will work for Sara. We will probably not post the site again until Tuesday evening so enjoy your long weekend break (in NZ!) and we will talk again then.

TTFN
Rob, Sue, Kate and Sara

A late one........that didn't work

2006-02-05T11:03:00.000+13:00

Hi everyone

Did an update very late last night and it has disappeared into cyberspace - will repost it later this morning - fortunately we have a printed copy!!!

cheers
Rob

Gotta fly!!

2006-02-03T16:15:00.000+13:00

Hi everyone
Dad and I have just spent ABSOLUTELY AGES loading these photos for your benefit...... hope you like them!!!! hehehehe nah just joking I had fun doing it!!! Dad will write an update later tonight or tomorrow!!!
By the way I typed this ..... WITH my KACK hand i hope you're proud ..... I AM!!! heheheheheehee!!!!
TTFN!!
Sara xoxox

Retail therapy and back to NZ!

2006-02-03T16:02:00.000+13:00

To Aussie and the Prince's hospital

2006-02-03T15:44:00.000+13:00

So Granty heres the proof but they wouldn't let us take a photo of me when I had it on in the scan - and remarkable proof it is too!

Lifes a beach and then to bed!

2006-02-03T15:37:00.000+13:00

Paparazzi time!

2006-02-03T14:47:00.000+13:00

Masking up in hospital, departing Matai St, having the raditherapy mask made, definitely a Crusader supporter (thanks to Val and Wayne Mac), and out celebrating the NCEA result at Le Cafe.

Aussie, Aussie, Aussie, Oi,Oi,Oi! We're Back!!

2006-02-01T20:58:00.000+13:00

Hi everyone

We are back from Aussie and all feeling rather tired! The day trip was turned into an overnighter which made things a bit easier. A couple of early starts including a false one this morning when one alarm clock went at 6.30am NZ time and it wasn't mine! The day yesterday went well and started with our great friend Pip Aitken meeting us at the airport and spending the whole day with us.

We went home to Pip's where Sara had a sleep for a couple of hours before we headed to the hospital for the 1.00pm appointment. The hospital scan went smoothly and Sara was finished by 3.30pm and then devoured her first food since 8.00am - a long time for Sara to be without food! We will hear about the results of the scan in the next couple of days.

Then we went off to the Supre factory shop for a bit of retail therapy where Sara had a great time choosing some tops for her and Kate and a bright pink bag for Sara.

We had a fine meal and lots of fun at home with Pip, John, Petra and Nicole and then headed to our hotel for the night about 9.00ish. After a delicious breakfast this morning we headed to the airport, got some duty free and touched down in Chch at 3.00pm. Thank you Pip and John for making the visit so easy.

And now its Sara here......

Granty, take note your challenge regarding the wacky hat was more than fullfilled and we have lots of photographic evidence to prove it! We will have to load some photos in the next day or two!

And also .....by the way Cheese on the way home we went past Kerrs Reach and spotted a Villa crew out training hard..........did not spot that cheesy grin, I hope your not slacking off! I am sure your are not though. Hehehe hehehe!!!

The plan has changed a little since the last posting. Tomorrow Sara has her op for the ovarian harvest, first thing in the morning, so it time to head off to bed. Then there will be another op on Tuesday for the lumbar puncture, portacath and the bone marrow harvest which has been approved - so there are more busy days ahead.

We are living by this saying at the moment "The plan is that the plan will change!"

Love from Sara, Kate, Sue and Rob.

Sunday night summary

2006-01-29T21:45:00.000+13:00

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

Cool day for Sara!

2006-01-26T23:58:00.000+13:00

Hi everyone

Sara had a busy day getting the back of her mask made for the radiotherapy which involved lying on a bed with her face in the front mask while the plaster cast mould for the back was made. Tommorow she has a CT scan using the full mask and we meet with the oncology specialists.

Sara came home to our new abode for the afternoon and rested up before a doing a little retail therapy.

Tonight we all(Sara, Kate, Alan Gleave, Rob, Sue and Aunty Ruth) dined out at Le Cafe to celebrate her fantastic NCEA level 2 results. She got an amazing 179 credits! ( you only need 80 to achieve). She got 1 excellence and 4 merits in her external exams!! Which she was stoked with!

It is very late and tommorow is another busy day, we will talk later!

Warm regards, Sara, Kate, Rob and Sue. xxxx

Late Wednesday quick update

2006-01-25T23:24:00.000+13:00

Hi everyone

The last 2 days have been a bit up and down for Sara (and us) as we all continue to come to terms with the events of the past few weeks. Sara is still in hospital while her medication for the seizures are sorted out. She has also been experiencing some nausea and diziness as a side effect of the medication changes. Today was a better day than yesterday and we went out to the Boatshed Cafe for lunch or breakfast depending on your mood and choice. Last night both Sue and I stayed with her, tonight it is just Sue and I am on the home front.

This afternoon we moved our stuff to our new abode on the hill near Sumner (courtesy of John and Glenda) and it feels wonderful to have some space we can call "home" for a while. We have been very lucky to be able to stay with Robyn and Mac for what has been nearly 3 weeks and enjoy the peaceful surroudings and garden of their place and be with all the family. Tomorrow night Kate returns from Twizel with my sister Ruth (where it sounds like she has been having a great time) and will be here also. We are hoping that Sara will be able to come home at night in the day or so.

She has had a few visitors in the past few days but is still getting very tired. She had a wonderful 4 hour peaceful sleep this afternoon and then dinner with us and her Nana and Aunty Robyn.

We will have to continue to manage her visitors carefully so please phone Rob on 027 223 4546 before visiting. She is spending some time out of the hospital during the day but is still resting lots during these times.

Her kiwifruit haircut is growing back very quickly - she loves to show it off to her visitors and get them to touch it. Tonight there was great excitement when she had a breakthrough with a strong desire for some chocolate biscuits - she has been rejecting all sweet food for the last 2 weeks!

And yes we are getting close to completely covering the wall in Room 5 with cards, messages, posters and monopoly boards! Thanks to everyone who has sent so many wonderful presents - they always bring so much joy to Sara and are a real boost for her spirit.

love to everyone

Sara, Kate Sue and Rob

Monday night update

2006-01-23T23:13:00.000+13:00

Hi everyone

An update on the events since the last posting on Saturday.

Saturday night was not so good in the end (Sara was staying at Matai St with us) but we had to rush Sara back to hospital at midnite after she had a partial seizure -like an epilectic fit - it was all over in 10 -15 mins but very scary for her and us - it was a more severe repeat of the thing she had in the movies in Nelson. She is now having the medication changed to prevent it happening again - this one was a side effect of the surgery and all the disturbance to the brain - the one in Nelson was caused by the tumour. The neurosurgeon we saw on Sunday morning explained it very well and we feel much more at ease with it now. Now we understand it more and know how to manage it if it happens again we will be better prepared if there is another one. She had a less severe one this morning in hospital. She is on home leave during the day but returns to hospital at night and will continue to do that until the medication is sorted.

Yesterday we said farewell to the two cousins from London (Tracey and Lisa) as they flew out to Los Angeles last night. We all went to the airport for the farewell. Otherwise it was a quiet day around at Matai St with a few visitors and lots of sitting in the sun and relaxing.

Today was busy with several meetings with specialists in the morning, Sara spending a little time with Kate before she went shopping with Ruth (my sister) and then we (Rob, Sue and Sara) visited John Galombos at their house down in Redcliffs. They (John and Glenda) have very kindly offered us their house while we stay in Christchurch and we will move down their shortly which will give us our own space for the extended time we are in Christchurch.

The radiotherapy is now going to start in 2 weeks time. We may try to return to Twizel before then for a few days but will see how it all goes. Kate has taken off for Twizel tonight for a couple of days.

We continue to receive lots of cards and messages which is great. Today Sara received a most fantastic present from Alan Grant - a Twizel monopoly board - with piccies of places and our friends in Twizel featuring all round the board - very cool and Sara thought it was awesome. It is now gracing the walls of the Room 5 at the hospital. You really have to see it in real life to get the picture!

In amongst it all Sue and I are sort of coping allright but it still seems unbelievable and all a bit of a blur. Being surrounded by family for the last 2 weeks has been awesome and a great comfort. It really is a day to day thing but I am starting to think about things a bit further out now we are getting all the stuff from the hospital while Sue is much better at the hour by hour approach.

Tomorrow we do not have anything scheduled so that is great but have plenty of reading to do - all the hospital info! Visitors are welcome but please check in with Rob on 027 223 4546 first. Firstly, so we can manage the pressure on Sara and secondly so we can let you know where we are! If we are in the hospital visiting hours are 11-1 and 3- 8pm.

Saras original quote for the day " Don't expect anything. The spontaniety of every minute is what life is."

Warm regards to everyone

Rob, Sue, Kate and Sara

2006-01-23T23:12:00.000+13:00

Sara and her Nana Crawford, cousins saying farewell at the airport and the famous Twizel monopoly board (many thanks to Alan Grant).

Saturday brunch

2006-01-21T19:40:00.000+13:00

Busy Friday

2006-01-21T19:28:00.000+13:00

Alternative hospital food, in control in the radiology unit, down at the river with Erin (on the icecream date), and the stitches come out under Saras supervision

Time with family and friends

2006-01-21T18:42:00.000+13:00

Grandma Young, Sara and Aunty Helen, Mac and Sara and Sara, Alan-Gleave and Kate having fun on Friday night

Wednesday afternoon around town

2006-01-21T18:29:00.000+13:00

A wheelchair ride to the Cathedral and doing some tree hugging!

The catch up

2006-01-21T15:28:00.000+13:00

Hi dear friends

It feels so good to have Sara back home at Matai St. We had a great family brunch pancakes, strawberries, banana and maple syrup plus cream. Pancakes to be repeated tomorrow by popular demand! Most of the girls have been to the mall including Sara and have just returned with Sara now taking a nap. I'm severely outnumbered at the mo 6:1 so stayed home with Kate and listened to some favourite music. It feels good to just chill out for a couple of days before we embark on the next steps.

So what has happened since "the late blog"?

Yesterday we had a further meeting with Mike Sullivan and his registrars and while we do not have the plan yet we are in the fast track planning stages for the treatment and will be discussing the plan on Monday. He has already had a response back from the his colleague in Los Angeles confirming his proposed strategy for treatment. Sara had a long sleep yesterday morning after a second night of waking due to headaches ( due to the healing process). So once she awoke we had a very full day with the the oncology meeting, meeting with the social worker who discussed the issue of hats and wigs for Sara amongst other things, going to the radiotherapy unit to be introduced to the treatment process and start the process of having her mask made for the radiology treatment. This is done with the same computerised technology that Peter Jackson uses for the Lord of the Rings mask making - so by next week the front will be made from clear plastic and then a mould is made for the back of her head. Sara got to drive the radiology machine with the remote control unit to see how it all works - she thought that was pretty cool.

Radiology will start in three weeks and run for a period of 6 weeks -Monday to Friday. The chemo will start 4 weeks after the radiotherapy has finished which will be around the beginning of May we think.

Following this we visited the CHOC ward and were introduced to it and taken round by the charge nurse Jan Millar. This is where Sara will be recieving her chemo from May onwards. This will involve her spending 2-3 days at a time in the ward every 4-5 weeks until the end of the year. We learnt lots and were shown the portacath and how it will be inserted to allow the chemo to be delivered without the need for temporary lures.

Then we had to take Erin (one of Saras nurses) down to the coolest vending machine in the hospital for an icecream and then outside to the river for a sit in the sun which Sara loved. The machine is so great to watch that you don't need any excuse to go buy an icecream!

And then it was time to have the 40 stitches out! Erin took to them and in no time they were gone - the healing is remarkable with virtually no sign of the surgical cut made in Saras head. An absolute credit to the skills of the neurosurgeon Mr Macfarlane - he still uses blanket stitch rather thn staples. and then home for dinner!

Sara had a great nights sleep last night and we saw Mr Macfarlane before we came home today and he showed us the second MRI scan. No doubt we will be looking at that again next week with Mike Sullivan. We have lots of action again next week but will probably not update the site again until Monday evening.

We need to just put the record straight on which rugby team we support - sorry Bob its not the Highlanders we a very definitely all converted Crusaders supporters even Kate who once supported the southern men!!!

We have posted some instructions for blogging for those who have been having frustrating experiences - hope it works. Will throw some photos up later.

love to all from Sara and her whanau.

Saturday morning news

2006-01-21T11:45:00.000+13:00

Hi everyone

Just a brief update - will do a blow by blow for the last 2 days later in the day. Sara spent last night in hospital and had a really good nights sleep. She came home to have dinner with all of us at Matai St (roast chicken by Saras request) and went back to the "hotel" about 10.00ish. I have just been into pick her and Sue up and she is now out for the day at Matai St and maybe the night - we will see how it goes. Just getting ready for brunch of pancakes.

She feels up to a few visitors today so if you would like to come visit her at Matai St then you are welcome - but please ring Rob first on 027 223 4546. We still need to manage it carefully to ensure her recovery continues as rapidly as possible and she will no doubt be taking a few naps during the day.

love to all
Rob and the rest of the whanau.

Blogging the site

2006-01-21T11:40:00.000+13:00

Hi everyone

Some people have been having a few problems leaving blogs and I must admit it does seem a tad confusing.

Here is the Idiots Guide to Blogging on "Keep in Touch with Sara" written by a non blogger!

1. Click on the "Comments" link at the bottom of the latest blog. Generally the photo postings won't have one but all the written postings will.
2. Choose an identity - best to use "Other" then you can put your name at the top of your blog.
3. Enter "Name" in the blue outlined box which appears when you click "Other"
4. Enter word verification letters into the box - the letters appear above the box - just enter them in the correct order. This prevents computerised spamming of the site.
5.Click the "Publish your comments" button

Your blog should appear when you go back to the site.

If you would rather email that is fine but please send it to our hotmail address: suerobyoung@hotmail.com

cheers
Rob

The late blog!

2006-01-19T23:49:00.000+13:00

Hi everyone

Well I'm home from the hospital and will try to update you on the news so far. Today we saw the Dr (Dr Michael Sullivan) and the team who are going to oversee the next phase of Saras treatment. She will be moving to the care of the Childrens Haemotology and Oncology Clinic (CHOC) as the tumour she has is a form of childhood cancer. It usually is found in children younger the Sara. It is called a PNET which stands for Primitive Neural Ectodermal Tumour. It is described as primitive because it arises from some of the most primitive cells in the brain ie the cells from which the brain originally formed. Because of the primitive cell nature these tumours can be quite aggressive ie they are designed to grow fast. Only 5% of brain tumours in children are of this type and not normally located where Saras one is - normally they are in the cerebellum. Because of where it is, it is relatively small for this type of tumour as a result of the symptoms appearing reasonably early.

So today a lot happened as the CHOC team moved into action. For us the speed at which it is happening is very reassuring and will feel that we are in the best care we can get. The histology was being confirmed today and this may require sending the sample to Sydney. Dr Sullivan has already emailed his colleague in Los Angeles Childrens Hospital (who previously worked in New York) to seek his collaborative advice on treatment.

This afternoon Sara had an MRI scan to see what remains of the tumour for planning the future treatment. Sara will have a lumbar puncture in about 10 days to check for presence of the cells in her spinal fluid - there is no evidence of any tumours in this area on the MRI but there is a need to check this to develop the treatment plan. At the same time she will also have a portacath inserted to deliver intravenous fluids and chemotherapy etc as part of the ongoing treatment.

While this is an uncommon tumour the team is putting in place a plan to ensure the treatment is right. This plan is going to be presented to us tomorrow afternoon all going well. Like we said yesterday it will take 12 months to complete and Sara will be taking a gap year this year.

We have also met with the CHOC social worker and the art therapist today. The OT came and visited and is pleased with Sara's progress. Tomorrow Sara will have her stitches removed and may be discharged from Ward 28. We will be visiting the CHOC ward and seeing the social worker for a full meeting. Sara continues to endear herself to all those who meet her and felt much more reassured after the sessions today with the various specialists involved in the process. She likes to ask staff and others how they like her "trapdoor" including the orderly who wheeled her down to the scan!

Sara had lunch out today at the Art Gallery with my family but is still very tired and cannot handle to many visitors so we will have to continue to ask that you respect the fact she is not able to see visitors yet. All the family continue to help in every kind of way which is wonderful including Robyn attending the team meeting this morning and another massage from Ruth this evening. My other sister Helen has headed home this afternoon to Nelson for a week or so - she has been a great support during the last few days - she is famous for her haybales - lamingtons - hence Aunty Haybale! Mac (Robyns partner) heads to Auckland tomorrow so he spent a bit of time with Sara this afternoon.

So we are all focusing on the future but taking it day by day - we will try to update the site again tomorrow but if Sara is out of hospital tomorrow night we will probably have other priorities! No time for loading photos tonight - maybe tomorrow - see you.

Rob and everyone here in Chch.

Quick blog!

2006-01-19T19:08:00.000+13:00

Hi everyone

Just to let you know that today went well and I will update the blog with the detail later tonite - like probably real late! On the run now as we go out for tea with the cousins and Kate et al. Just left Sara in good spirits an hour ago. Thanks for all the great messages, cards, blogs, emails and pressies in the last 24 hrs - they have really helped all of us to cope.

love to all
Rob

A long day .....

2006-01-18T22:14:00.000+13:00

Hi there,

Well - it's been a long hard day and we all feel very wrung out. The news is not so good. This morning the neurosurgeon confirmed that Sara has a malignant tumour (P-net tumour).

However, after a discussion with the oncologist tonight we have some rays of hope. The tumour is one which will respond to treatment with a reasonable success rate. It is going to be a long journey and treatment (12 months) will include both radiotherapy and chemotherapy.

Tomorrow we will know more but tonight Rob and Sue are staying with Sara in Rm 5. They are all feeling a little stronger this evening and are preparing themselves for the next step.

The next couple of days are going to be busy with many meetings with various experts of the different fields associated with Sara's treatment. We ask if you can all continue to be patient and allow the family some space to come to terms with the situation.

However we all get great comfort from the blogs and texts of support that you are all sending - please keep them coming as they are really making a difference during this very difficult time. Sara reads every word of the blogs we print off (often several times over) and values them highly.

Thanks once again for the ongoing support.

Regards,
Robyn

A busy day

2006-01-17T19:45:00.000+13:00

Hi everyone

A bit of a late post tonite after just getting back from the hospital. Kate and Sara had a good night and slept in until 8.30am! Another busy day for Sara with the physio, social worker and occupational therapist visiting in the morning. The social worker came to discuss amongst other things, Canteen (which is a support group for young people with cancer). Sara had lots of little naps during the day and visited the OT again in the afternoon for an assessment which went well and will be followed up over the next few days/weeks to help restore the full mobility in her right hand. Tonight for the first time since the op she texted 2 messages with her right hand - she was very pleased with herself.

Rob and Sue spent the day at the hospital after being home together for the night. Tonite, Lisa (Saras cousin) who is home from London will spend the night with Sara. We have a big day tomorrow with a meeting with the neurosurgeon in the morning.

Sara continues to demonstrate her great sense of humour with wisecracks about the fact that Rob's done more housework in the last few days than he has ever done in his life (as we keep the room in order so you can get in the door!). It is now very well decorated with the end wall covered in cards and the poster from all her Twizel friends.

Another round of great messages today - thank you everyone for that - we love them and so does Sara - they all get printed off and taken in each day.

Love to everyone
Rob, Sue , Kate and Sara

2006-01-17T19:41:00.000+13:00

Sara reading all the wonderful blogs, the decorated room, keeping busy with her texting (right handed!), the 4 cousins Tracey, Sara, Lisa and Kate, and Sara practicing her royal wave while Michelle tries to check the blood pressure!

The headgear has come off!

2006-01-16T21:21:00.000+13:00

Hi everyone

Yes the bandage has come off to reveal the new trapdoor hairstyle. Sara is very proud of her new style and took it out to the Avon River and then to Medici Cafe this afternoon - there was no one else with a similar style - definitely very unique! Sara has had a bit of an up and down day but we have just left her in the expert hands of my sister for a massage and Kate is going to sleepover with her tonite so there might be a few midnite feasts! She had a late afternoon kip and was looking a lot better for it when we returned from our evening meal - cuz Lisa took care of her in our absence.

As she is still getting very tired and finds lots of people visiting very tiring she will not be able to have visitors tomorrow other than family. But please keep the messages coming and hopefully later in the week she will feel more able to cope with a few visitors.

Enjoy the photos.......as they say a picture tells a thousand words.

Many thanks for all the support -it has given us great strength and comfort over the last few days.

Rob, Sue Kate and Sara

Day 3 after the op.

2006-01-16T21:13:00.000+13:00

Kate and Erin remove the headgear, the Zoolander style is in, down by the river enjoying the sun and it is kip time - my parents and sis wore me out.

A quick update

2006-01-16T11:13:00.000+13:00

Hi everyone

Sara had a good night last night and Mr Macfarlane (the neurosurgeon) has been around this morning and is pleased with her progress - her hand movement continues to improve. She has been for a couple of walks this morning around the ward and is feeling good and still smiling of course. Kate and I are about to go back to the hospital for Sara to have her bandage off! She had a great afternoon yesterday with lots of family visitors and Ruth did some more massage.

Today she needs another quiet day so please no visitors other than family. She may be able to have some visitors tomorrow -1 to2 at a time - we will post it on the web site tonight or first thing tomorrow and manage it by people phoning Rob first.

Thanks for all the emails, blogs and texts - Sara is collecting them all up for her diary which she is working on today.

Sara and her whanau

Down by the river and out in the sun!

2006-01-15T12:28:00.000+13:00

Smiling away!

2006-01-15T12:09:00.000+13:00

Sara back in her room drinking a cup of chicken soup for the soul in amongst all her things and the banner courtesy of Helen and Ruth. The nurses love the room too!

This girl has attitude!!

2006-01-15T11:48:00.000+13:00

Hi everyone

Its Sara here, Dad has written this down and is putting it into the website for me.

"I am feeling really good today, I had 2 midnight feasts last night, - jelly, peaches, chocolate mousse and desert was a nectarine! The nurse was wondering if I was doing any sleeping amongst the eating. Had a shower this morning and then walked back to my room (40 Young strides). My Aunty Robyn and Maccy have been in this morning while Mum and Dad went out for breakfast, then when they came back they all took me for a wheelchair ride down to the river, where I sat in the sun and soaked up its warmth - it was sooooo awesome. I am back in my room now with all my wonderful cards, flowers, toys, messages and all my things sitting in my lazyboy chair. The nurses are really cool especially Belinda who might do my hair later in the day."

Please no visitors today other than family.

Love Sara

Sara partying with her soft toys today

2006-01-14T22:27:00.000+13:00

28 hours after surgery....

2006-01-14T20:29:00.000+13:00

Hi everyone

Its Rob here taking a break from the hospital at Matai St for dinner. Sue and I have been with Sara for most of the day. It has been an up and down day for all of us especially Sara but we have just left her in the caring hands of my sister Ruth. Ruth practices a thing called "healing hands" and managed to get Sara into a deep sleep this afternoon when she was in quite a lot of pain. She has woken and eaten some dinner and was really chipper for an hour or two. She reached another milestone this evening when she fed herself with her right hand -fantastic!

She is still in the Special Care room but may be moving back to her room tomorrow. Ruth is going to be at her side for the next couple of hours and will hopefully managed to get her back to sleep with her "healing hands."

Just a quick reminder to everyone - Sara is still in the special care unit (rather than her own room) and she has not been cleared for visitors as yet. We know there are a lot of people who would very much love to come and give their support personally, however it is still too early. We are getting lots of big smiles for everyone (as you see from the photos) but it does take it out of her and she needs her rest.

We are all loving all the blog messages (we print them off and take them in for her) and Sara is still getting the texts so that is great - keep them coming for her.

Rob, Sue and Kate

Sara eating icecream .........yum,yum!

2006-01-14T19:46:00.000+13:00

The next morning...

2006-01-14T10:09:00.000+13:00

Rob has rung from the hospital to say that Sara has had a reasonably good night and enjoyed a good breakfast this morning. The surgeon is very happy with how the operation went and her progress so far.

Robyn and Mac spent the evening with Sara to give Sue and Rob a chance to have dinner and a break from the hospital. Sue and Rob spent the night at the hospital and got some sleep in the lazyboys provided. All three of them are tired but coping remarkably well under the circumstances.

Sara continues to display her sense of humour and is in a positive state of mind. She complained that the staff in recovery were 'really cheap' - they would only give her 10 mls of water!! She spent the rest of the evening catching up with her fluid intake and had tea and supper.

She believes her role is 'to keep them on their toes', so she asks plenty of questions and is handling the situation very well.
We are extremely proud of her.

Thank you all, once again, for your support. We'll keep you posted as the day progresses.

Robyn and the support team

Still smiling...

2006-01-14T10:02:00.000+13:00

Post surgery......it all went well.

2006-01-13T18:32:00.000+13:00

Hi everyone

Sara is now out of surgery in the Special Observation Room in Ward 28 Chch Public Hospital where she will be for 24 hrs or more. The surgery was successful at removing most of the tumour as expected. She is doing well and her sense of humour is back already - she can't wait to do something styley with her hair to cover up the missing bit! She is quite perky and having a little to drink and eat. The surgeon is pleased with the operation, her recovery and motor movement in her right hand. We now have to await the results of the histology which we get mid next week and then will know a little more about the next phase of the journey.

For the next 2 days or so it will be family visitors only please, as she needs to be kept relatively undisturbed and not have too much stimulation. We will let people know via the website or word of mouth once she can have more visitors. Once again thanks for the support and Sara says a big thank you for the lovely presents and flowers.

Sara and her whanau.

Sara being a tough guy before the op - thanks to Bob Giles

2006-01-13T18:14:00.000+13:00

The Big Day.......

2006-01-13T14:10:00.000+13:00

Hi everyone

The day for Sara started with a 6.00am wakeup call to wash her hair. She had a great nights sleep and is in really good spirit today. Rob and Sue stayed with her in her room in a couple of lazyboy chairs and both slept well too - we are looking after ourselves as well and feeling much more together than earlier in the week. Sara went to theatre at 12.00noon in really good spirit. The conversation in the anaesthetic room just before Rob left was something like this:- Sara " Are people normally nervous now?" The hot anaesthetist (as described by Sara and Kate - too bad he has a wedding ring) replied "Yes very nervous". Sara responds quiet calmly " I am not nervous at all" with her fantastic smile all over her face! The op will take 3-4 hours. We have all taken a break from the hospital environment and had a family lunch and come home to Matai St for a little while.

Sara has made her mark in the room with all her gifts and while we were going to have to move out, they have now decided that we can stay in the room because it is so full of all the messages. Including the fantastic photo board from one of Saras friends in Twizel (thanks Sarah) and a fabric banner with the "Never Give In" message which is 2.5m x 1m made by Rob's sister Helen.

Thank you for the continuing stream of messages via the website, email and text - they are so heartening and helping us all to cope and feel all the positive energy and belief out there. We all feel really good about the fact that Sara's journey back to good health has started.

Love to all
Sara and all her whanau.

Good Morning America

2006-01-12T09:17:00.000+13:00

Hi all

We have just been to the airport and picked up Kate, Ruth, Tracey and Lisa. All the family was there to welcome them and it's great to have them all home. We have just had a typical American/Kiwi breakfast of bacon, eggs, baked beans and refried potatoes followed by tea and coffee. Yumm. Kate and Sara are having some sister time this morning before Sara goes to hospital early this afternoon.

Today she is naturally feeling a bit worried about tomorrow and what it might bring, but she is still her usual bubbly self. Kate brought her home a puzzle, T-shirt and her favourite American snacks - cinnamon toast, and goldfish (cheesie snacks). Typical of Sara she solved the puzzle twice in a very short time - it would take the rest of us most of the day to get it under control!!

Today is a family day with Rob and Sue's family coming around to give support and encouragement. Great to see some messages already posted on the website - pretty exciting for us beginner website developers.

Sue and Rob will spend the night in the hospital with Sara in Ward 28 at Christchurch Public Hospital.

We ask everyone to respect our need for togetherness at this time and only visit when invited over the next few days.

We'll keep you all posted.

from Sara's whanau

Kate and Sara back together inside Kates skipatrol mates jersey

2006-01-12T09:00:00.000+13:00

Hi everyone

2006-01-11T19:52:00.000+13:00

Hi everyone

It is the 11th Jan and we are back in Chch having a quiet day with family after visiting Twizel yesterday . We had lots of fun and Sara loved her gathering at Shawtys and Hunters with all the Twizelites. Last nite we all slept really well and we are all feeling a lot better than the last few days. Yesterday Sara really enjoyed her visit to the Mackenzie and the wide open spaces and lying in her room at home very briefly - that and seeing all her friends raised her spirit and ours.

Thank you to everyone for all their love and prayers - we feel surrounded by good vibes and wonderful friends. We are not able to individually acknowledged them but Sara and her family deeply appreciates them. Keep them coming!

Tomorrow Kate arrives from the USA with Robs sister Ruth from Canada. They will be on the same flight and will be joined by Kate and Saras cousins Tracey and Lisa who are coming from London! And also the PE teacher from Twizel Frosty Boy Mark Frost. This girl has some pulling power!

Please no visitors unless invited for the next few days.but blog the site or text Sara ( she loves the texts). But dont expect her to reply - she finds it tiring.

The mailbox number is P.O Box 8137, Christchurch.

Sara s operation is planned for Friday morning. The plan is to remove as much as the tumour as possible and then we will have to wait till next week for further results.

Love to everyone

Rob Sue Sara and Kate (on her way)

xoxoxoxoxoxoxoxoxoxoxo

A day in the Mackenzie -gathering the spirit

2006-01-11T19:29:00.000+13:00

Sara

2006-01-11T12:46:00.000+13:00

Sara out sailing last week

The story ........

2006-01-10T18:50:00.000+13:00

Hi everyone

Some of you will not have caught up with the news from the Young family and other have but here is the latest.

We had a fantastic week sailing in the Marlborough Sounds after Boxing Day with Robyn, Mac and Tracey and then we headed to Jane and Mart’s in Nelson. While on the yacht Sara had some trouble with her hand and we thought she had RSI as a result of all her text messaging to her wonderful friends and soooo much writing studying for exams. While in Nelson we went to the physio but then at the movies that night Sara tried to speak to Rob and found she could not get the words out. The next day we saw a doctor in Nelson before heading back to Chch.

In Christchurch we saw our family doctor and he immediately got very concerned and got us into the hospital system by 2 o’clock that afternoon. Friday night Sara had an MRI scan. By Saturday afternoon we had the terrible and devasting news that Sara had a brain tumour.

Monday we saw the neurosurgeon who explained in more detail what we were dealing with. We have been told we have one of the best neurosurgeons in NZ so that is very reassuring.

Our beautiful Sara is one of the best to - a shining light for all of us. She is so strong and her 17 years of determination have put her in good stead for the days ahead. I guess her stroppy terrible twos started to get us on her path as well!

If you would like to email us then the email address is: suerobyoung@hotmail.com

Love to everyone

Rob Sue Sara and Kate (on her way)

xoxoxoxoxoxoxoxoxoxoxo