26th to 28th October 2010
I have now been seen by a marvellous paediatrician who has looked into many aspects of my illness, surgery, treatment and how I am now. It appears that this could all be an Endocrine issue which goes as far back as to the beginning of my chemotherapy. Basically I stopped growing, I have not grown in a year, my tumour in the pituitary has stopped me growing and it can also affect your metabolism, so I now have to see a new Endocrinologist and it is likely I will be put on daily hormone injections.
My xray results came back, I do not have a fracture but I now have to have an MRI as it is suspected I have a stress fracture or severs disease which is a tendon problem. I have seen a cardiologist and my heart is in fantastic shape, my seizures are from electrical waves in my brain that cross.
I am seeing a new nutritionist on Friday and physiotherapist. Now under the care of a better doctor my storm is beginning to turn to a shower, I know that a rainbow of hope will appear for me. This experience has affected me terribly but I will bring forth my strength and then I can only grow from it.
Today I have had art therapy and I am at school working on my Australian Studies Assessment on the Australian Flag. I can hardly wait until this afternoon when I will see Mum and be able to tell her all about my day.
I miss my family, home and friends back home, it was a long, difficult year last year being in hospital and away, I thought that this year my life would be moving forward, I would be full of strength and happiness but obviously God's plan is for me to still have some hurdles to cross.
If you watch Parliament today, you may just catch a glimpse of our politicians wearing a grey ribbon for Brian Tumour Awareness Week. I was supposed to be at a special morning tea at Parliament House today to celebrate, I am so disappointed that I could not share such an important occasion for a cause that I am so passionate about.
I wish to thank you all for your words of encouragement they have truly helped me through these last few dark days, I am so blessed to have you all in my life, you are my rainbows.
'When dark clouds fill your sky, remember the sun is always waiting to shine from behind"
12 comments:
Dear Dainere,
Chin up, beautiful girl! You've weathered the worst of the storm - clear skies ahead. I'm busy making Christmas decorations to sell to raise money to buy Christmas presents for the kids in our orphanage. I'm going to make you a rainbow one and send it down :)
Big love,
Cate & all the family.
You are a rainbow, Dainere! It's so wonderful to read that you are in good care, wishing you many bright days ahead,
Christie xx
Great news, Dainere! Things are looking much more positive now. Keep on keeping on!
I'll watch for those politicians with their sparkly, grey ribbons on the News tonight. I'm sure some of them have heard your story, or, if they haven't, they will. :-)
Sounds as though you are enjoying school. It's good that you can do some of your Australian Studies assessment. I'm sure you would have liked doing art.
Hopefully, you'll be seeing Mum soon...love to you both.
Looking forward to hearing more good news soon,
Mariannemr
Dear Dainere
Stay strong. It's good to see things are looking up. Hopefully it won't be too long before you can return home.
Sorry to hear you missed the morning tea at Parliament House.
It's good to see that you were able to have some time to do your Australian studies assessment.
We are all thinking about you and sending our prayers your way.
With lots of love,
Steph D and family xxxx
Hi Dainere,
I'm glad that you are feeling better, It great to know that the storm have turned in to a shower with sunny days ahead.
Have you watched My Sisters Keeper yet? I hope you do it is a beautiful movie.
Hope you see the rainbow at the end of the storm.
Lucy xoxox
Hi Dainere,
I am so glad to hear that things are looking brighter and that you are being cared for. I hope that things continue to improve and that you can soon come home to us in Canberra. We are all looking forward to seeing you return to school.
I got an email from your mum today and I would be happy to do that for you. In fact I will be doing it for you in front of the whole assembly. Your audience will be bigger.
Take care and get better. The weather here in Canberra is lovely and we are walking around in short sleeves.
Hope to hear from you soon.
God Bless.
Mrs Chatty
My girls and I are so glad to hear that finally someone is actually listening and helping u. Stay strong and positive u really r an inspiration.
Thinking of u on this difficult time xxxxx
HI Dainere, oh this is fantastic news , we are so happy for you , its like all the pieces of the jig saw are starting to fall in to place .
We will be thinking of you when you have that noisy MRI , they are a God send but oh so noisy. No MRI machines when I had my first tumour Dainere, in fact CT scans had only just been started here in Australia !! how about that .
Having seen the cardiologist and getting an excellent report on your heart is simply wonderful.
Thats great that you can do your Australian studies and also the work on our Flag.
Gods plan is one we never know , until its played out Dainere , thats the mystery of it all.
Im sure you like I have sometimes said "Why me ", i certainly have , but hey it all worked out over time , quite a long time but it happened , and it will for YOU.
Much love , best wishes and a wish that progress will continue to be made .
love stuart and Meryl xxxxx
That is so wonderful that your storm is turning into a rain shower, I love your way with words:)
I am glad to hear you didnt have a fracture
I bet your flag will be gorgeous, I keep hearing about how creative your work is at school from Charli.
I hope you get back to Canberra soon.
I bet you havent lost that gorgeous smile
xxxxxxxxMonica
Dainere,
I am so delighted for you and your family that that things seem to be a bit more positive.
Remember the sun is always there - sometimes it's just hidden by clouds. Glad some of your clouds are clearing and the sun peeping through.
Keep on keeping on.
Ali
Hi Dainere,
I have never written on somebdy's blog before - so consider yourself my No1!!
I have been reading your blog and then your book and I am so amazed at your strength and determination and am appalled about the events of the last week. And yet- you still somehow find the rainbow. You are a true role model to me and so many others. Thankyou for continuing to share your journey. My love and thoughts to you and your amazing family.
Catherine
Hi Dainere
Lots of politicians wore the ribbons!Senator Catryna Bilyk said that some of the men asked for no glitter next year - some of the glitter came off on them and their clothes and some thought it was a bit girly! I will get some photos to you. Thanks for your help making them up.
Glad you are on a clearer path of rehabilitation and pleased to hear about Jarrett's great running.
Regards
Susan BTAA Vice Chair www.btaa.org.au
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