Wednesday, November 10, 2010


10th November 2010

We just wanted to let you know how Dainere is going.

She is having difficulties maintaining her phosphate levels due to leakage from her kidney's which you already are aware have been damaged from the Cisplatin. 

No results as yet on the bone density as they have new machinery which requires conversions to work out the exact results.

Her right foot continues to be painful with the stress fracture, they are looking at her having some physiotherapy of the non-weight bearing type later this week.

She is still off her caltrate as it was stopping the absorption of the phosphate also, she will remain off it and if her phosphate still stays the same then that is obviously the best they can achieve, so she will then be taken off phosphate and given caltrate as it appears she will have to remain on it permanently.

She is now classed as Stage 3 as part of the program, this is the final stage and leads to discharge, it appears it will most likely be in the next couple of weeks. 

Once discharged she will be treated by our paediatrician and his team back home, she is not able to go to school for the rest of the year to assist her body to recover.  This means that she has missed virtually this whole Term. 

She is trying to keep her spirits up and be positive, she really misses family and friends back home, this has been rather traumatic for her.  Canberra sounds like it has had many rainbows lately we think they are coming out especially for her.

Jarrett won the 5km Run in the Train for the Brain Fun Run on the weekend, which Dainere was extremely excited about. 

Thank you again for your support and lovely messages which we have been passing on to our courageous girl.


Anonymous said...

Hooray! at last Dainere you are on the last stage before going home. Guess you will be able to have some visitors soon. We wish we could come to see you but it is a long way for a short visit. We are looking forward to xmas with you all though.

We think Mum might need some big hugs so maybe when you get home the rest of the family can give those to her. We know you always give her plenty.

That was a great run by Jarrett. It must be hard for them with you and Mum being away with final exams coming up.

Guess you will be disappointed about not getting back to school. You were enjoying it so much. Never mind next year will be bigger and better for you we are sure.

Nan is reading a book written by Lance Armstrong's Mum about her life and Lances. She has a quote in it that we think you may like - "Make every setback an opportunity". That was something she told Lance after one of his early races. He says he has never forgotten those words.

Hope you will get home real soon.

Lots of love
Nan and Pop xxxx oooo

Anonymous said...

At last! So glad to hear Dainere is on the stage before she is able to go home. Hopefully, the time passes quickly.

Hope physiotherapy can start soon. It will be good to get those muscles going again, even if Dainere isn't able to weight bear yet.

So sorry about school. Dainere was so looking forward to this term and all its fun as well as work.... but 2011 isn't so far away, is it.

Great news about Jarrett! So pleased he did so well in the Train for the Brain run. Congratulations! Any news about Nalani's operation yet?

Rainbows are so special! We haven't had any here lately, but it's good that Canberra has! Hope there are some left for when Dainere comes home!

Sending love and prayers to one brave, inspirational and splendiferous young lady, and her family, too,


Anonymous said...

To Dainere and her wonderful family,
My thoughts and prayers are with you all, such a strong special family coping the best they can, just take a day at a time, when your feeling stressed stop for a minute, close your eyes and take a few deep breaths its amazing how this helps, I love this saying, " What doesn't destroy me makes me stronger".
Please know that us bloggers out here really do care, not just for beautiful Dainere but also for Mum and Dad siblings and grandparents there is nothing stronger than a families love for each other.

With love Susan

Anonymous said...

Thanks for the updates

Yes we have had many rainbows and of course they all make me think of Dainere.I have never seen Canberra so green but not so good for hayfever sufferers.

What a shame to miss the last weeks of school but hopefully she can come to some of the end of year celebrations for a few hours and as everyone else has said, 2011 will come around soon enough.

I hope the physio goes well and well done to you Dainere to getting to stage 3, I bet it has been traumatic but hopefully it has made your tiny body stronger.

Great running by Jarrett, I bet he ran extra fast thinking of his sister. What a wonderful family.

Sending prayers your way that you will be home soon,

xxxxxxxxx Monica

Anonymous said...

Dear wonderful Dainere , Yvonne and all the family , you are all so strong and as Dainere would say "splendiferous "ge I love that word Dainere.

The test results will come in and yes it is the worst time waiting for them , lets all hope and pray they are good results, not quite sure what non weight bearing physio would be , we have a hydro Pool at My hospital for people who need that kind of thing .

Stage 3 fantastic Dainere , Hope fully you can have visitors very soon , you deserve it well and truly.

Sorry to hear that school is out for this year , but you are such a good girl , Im sure your teachers can give you work to do at home and possibly come to some arrangement for you .

As I have said before , You are bound to miss people , ,we humans are very social things and we need our friends and family , Dont wory Dainere , its ok to feel this way . and you know that we bloggers love you heaps.

Good on Jarrett fantastic result.

Lots of love and hugs and kisses

Stuart and meryl xx PS , Dainere we have been asked to be God Parents for our friends who lives in Lima Peru ,who has just had a little baby boy. yipee

Anonymous said...

Dear Yvonne

I'm sure the rainbows in Canberra have been for Dainere. I've seen quite a few lately but there were two that really stood out during the last week.... there was a very big rainbow near Dainere's current school late in the afternoon last week and there was another big one near her old school on Monday or Tuesday afternoon. Luke was trying to take a picture of it out of the car window.

Hopefully Dainere will see a lot more rainbows when she comes home.

Please let Dainere know that we are all thinking of her and hope that she can return home soon. Our love to you all.

Steph D and family XXX

Ali Davies said...

To my little Australian Rainbow

Good to hear you are nearing a stage when you can go home.

I am thinking of you often and sending you lots of good wishes and suppport from Ireland.

Thanks also to your family for updates. It is really good to hear news until you are able to blog again. Much appreciated.

Keep on keeping on special girl.

Ali x

Michelle Arms said...

So pleased to hear that Dainere is THAT close to being home with you all again.

She is certainly very courageous and this whole experience has no doubt strengthened her even more. But I can't imagine how traumatic and bewildering it has all been at the same time :-(.

Rainbows ahead indeed!!!!

Dianne said...

Dear Dainere and Yvonne,

It is good to read that you are improving and have a 'release' date coming soon!

Dr Rosier will look after you well when you get back and I'm sure that without so much stress you will do much better.

Jarrett did well in his run, good on him. I hope to see him, Dad and Nalani at Interclub soon. I did see Nalani helping with throws the other week. It is good her knee surgery is coming up soon. She will have lots of time to recover over the holidays.

Lachie is doing Rep Futsal on Sunday mornings so we have not been at the track for a while.

He is training for a decathlon in January at the NSW Combined Events Champs in Sydney - yes 10 events - he is keen to do it and see how he goes...aiming high? why not!

Take care and give Mum my love. I will talk to her on email soon.

Lv Dianne xxxxx

Anonymous said...

Hi Anthoney Family

Thanks again for keeping us posted. I pray like mad for Dainere's Sydney trip to be over soon and it sounds as though it's getting closer to home time. As long as she can go home feeling a little stronger physically then it's been somehow worth it.

I remember being 19 yrs old, healthy and stong travelling the world. I reached a place called Chepstow in Wales and developed "homesickness". I had my friend with me but it didn't matter, I just wanted to go home. I had to find an inner strength, a technique I guess that somehow made a difference to my thought process so I could overcome "homesickness". I wrote letters and postcards, looked at the photos I had with me from home and eventually I began to heal.

Family and Friends are extremely important Dainere - even all of us bloggers who are your friends now are praying for you, to keep up your inner strength to heal and head home. Please smile, we all have respect for your courageous fight,
take care, Love Fran xo

Anonymous said...

Dainere - oh my blossom - I haven't been able to follow your blog as much as I would like lately, and when I read your last couple of posts, they broke my heart. I just ache for you, being in hospital and feeling like everything and everyone is so far away and that things are passing you by. Things aren't passing you by, as you make where you are ever so special, just by being yourself.

Not everyone has to fit into the teenage angst mould and I am so glad you don't. You just be how you want to - you have a great relationship with your mum and dad and Nalani and Jarrett and your Nan and Pop. It is the rest of the teenagers who should be jealous of you for that. Relationships are precious and good ones filled with love and mutual respect are rare. Just like you.

I don't often share too much personal information about myself - oh except a lot about my 3 cats. I often call myself the crazy cat lady. The reason I haven't had as much time to follow your blog is that about 8 weeks ago I was blessed to welcome my own little girl into the world - Hannah - carried to me on the wings of angels, after a very heartbreaking and harrowing journey. During my pregnancy with Hannah I avidly followed your blog and in all honesty it was one of the highlights of my day - catching up on what you'd been doing. It still is, just less frequently do I get the chance. One of my wishes for Hannah is to be as generous and courageous as you are and that I will be as amazing a Mum as yours is. It's a pretty tall order, but might as well aim high.

Keep shining strong my sweet. I know you can do it. Hoping you'll be discharged in no time and be back home in Canberra.

Go gently and as sad as I am not to read your words on your blog, I am so glad your family have kept up your blog. You'll be back blogging in no time.