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

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

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!

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

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

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

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

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!

An update on the last 3 days.

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

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.......

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

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

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!

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

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!!

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!

To Aussie and the Prince's hospital

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!

Paparazzi time!

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!!

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.