Friday, January 13, 2012


7th to 13th January 2012

'There are times in our lives when life isn't all we want it to be but we should see each new morning as an opening door to a better day than the one before.'

After suffering from dreadful constant headaches that made my head feel like it was actually going to explode and feeling so ill last week, we were able to speak to my Endocrinologist this week about my headaches, pain and nausea since taking the growth hormone injections, Genotrophin.  He told me to stop taking them immediately, he was really concerned about me and he tried to organise an MRI of my brain as soon as possible, the earliest we can get is the 1st of February which was when I was scheduled for one anyway,  unless a cancellation comes up earlier or if I have to be rushed to hospital because the headaches become worse including blurring of vision, dizziness or vomiting.  You see a complication of taking growth hormones when you have a brain tumour is that it can cause an existing tumour to become aggressive or it can actually cause the return of tumours very quickly.  I am hoping that this is not the case, of course my residual inoperable tumour has enlarged slightly in the last MRI's but has remained stable so hopefully it will remain that way. 

I also have to have another bone age scan which will be done at the same time as the MRI on 1st of February and then I have to have another MRI which will be on my spine on the 8th of February which is not only my first day back at school for this year but also my Birthday!

I had physiotherapy also this week and although my x-ray did not show a fracture, the physiotherapist feels that it is extremely likely that it could be a stress fracture which would not show in an x-ray but would show in an MRI bone scan.   Also the actual x-ray that they did was not done standing and that would also show a fracture more clearly.   She would have put a boot on my foot to help it, however my foot is too small to fit one, so I have a tubular bandage on it at present to protect it.  It is so frustrating to have a foot injury yet again as it is painful to put pressure on so I have to keep off it as much as possible, it is also still swelling sometimes so having a shoe on hurts. My leg muscles are also rather tight so that is causing me some problems and they needed to be loosened off.  I have physiotherapy again in two weeks time and I am hoping that Kaitlyn will be able to help me to recover in time to throw in the Athletics ACT Junior Championships on 3rd of February.

Although my headaches have improved a little since been off the growth hormone, having felt so ill really knocked me around so we have not been doing that much this week.  I am relieved though that the pain in my hips and legs that was waking me during the night has virtually disappeared now, so I am sleeping much more soundly and that makes such a difference to how you feel the next day.

Yesterday we did go to Interclub, Nalani competed in the discus and shot put, I could not compete again because of my foot and Jarrett is not back to track running yet because of his foot injury from last year, the track, even though it is synthetic, it is quite firm so he does not want to risk re-injury.  There was a mile championship on, which Jarrett would have competed in if he was able to run on track.  It was a terrific race, because Martin Dent was running in it, he won the race in 4:24 he is a really terrific distance runner, he is hoping to make it into the Australian team at the Olympics. 

Today I got my new uniform for School, because I will be in Year 9 and that is Senior School, we have a different uniform.  It is a taupe, pleated skirt, white blouse with navy piping on the pocket and a navy tie, it looks really smart although the sizes are all ladies so it is a little large on me, I am quite a bit shorter and smaller than most girls my age. 

I am still trying to think of a new and unique fund raising idea for this year, if any of my wonderful followers have any splendiferous ideas, I would really love to hear them.  If we can raise more funds and awareness this year then we may get just one tiny step closer to finding a less devastating treatment or a cure for brain tumours.  Have a blessed week filled with many special rainbow moments.


Anonymous said...

Dear Dainere

So disappointed to read of your bad reaction to the growth hormone injections. :-( But glad to hear that the pain in your hips and legs is not waking you in the night. You are so right - being able to have a better night's sleep is a real blessing.

February 1st will be a busy day for you - at least your appointments can be in done in Canberra.

Your new uniform sounds very smart. Have you always had to wear a tie? I imagine it would be quite hot to wear, especially in Canberra's hot summers (when you have hot ones! It's been quite cool down there lately, I think....).

Unfortunately, I haven't any clever ideas for fundraising this year. But crazy hair days used to raise some money at school. Maybe you could challenge the other campuses (or another school) to see who could have the craziest hair/hats and raise the most money. I'm sure lots of people will still be saving their 5c pieces, too.

Wishing you all a week full of happy rainbow moments, too.

Love and prayers,


Anonymous said...

Hi Dianere,
I have just come back from holidays (no computer!) and caught up with all your happenings. I'm so sorry that you had such a bad time with the growth hormones - it was such a lead up to taking them and then for you to be feeling so rotten must be a real disappointment and quite scary. Your strong spirit still shows through in your writing and best summed up by husband when I read him your blog _"she's one tough cookie!"
Our on again off agin summer is weird. I think Ollie the cat was contemplating growing his winter coat after our 1.6 deg temp the other morning. Not content with laying on our bed, at some time during the night he snuck in under the doona and kept me warm.
This week marks a big change in our family. Our eldest daughter is off on an exciting adventure to the UK for 6 months. She will be working with a lovely family with three young children and it will be great training because after her gap year she wants to study primary school teaching. Oh... but I will so miss her. Its great that there is Sykpe and email but nothing is as good as a hug :)
So precious girl have lots of hugs this week to help you feel brighter and here's hoping that all those horrible side effects settle down completely.
lots of love,
Catherine and Ollie.

Anonymous said...

Hi Dear Dear precious Dainere, yes so true and we pray that one the doors will be opened for you that is better than the one before .

WE are so very sorry to hear of the new problems being faced , we know you will face them with the determination that you have shown so far , you have "the glass is always half full "attitude and you are a power of strength .

We will be in communication between now and 8th february.

We are so happy to hear that you are sleeping more soundly now , sleep is so important isnt it .

Meryl and i think you will look fantastic in your new uniform , just remember Dainere , you may not be a talla person as you would want to be BUT my friend , you can walk down the street holding your head up high for what you have done and still do for the cause of other children with brain tumours , sometimes we , as humans forget the impact we have on others and the support we give others because we are so deeply involved in helping those said others.

Um some ideas Dainere.

Well sorry , but excuse my ignorance about modern day school life , not quite sure if you use white boards still , but if you do , may be you can do what we did many years ago , when i was in high school :

We "stole " all the school black board rubbers , same as white board rubbers , and made all the staff pay to get them back and we donated the money raised to the Guide Dog for The Blind Association , i went to a large co ed school of 2000 children , when i was in high school , i was deputy head boy.

Im sure if you organised it with the prefects and teachers in advance they would love to be involved , we did it at the end of term , when scool work was not as important and teachers were more relaxed , hahaha.

Also may be you could ask members of interclub if they would collect your 5 cent coins .

Could you ask the girls and boys at school if they could ask mums to bake a cake and see if you could hold a stall on a weekend in the school playground

If you did hold a school cake stall , i would be happy to have some prints made and blown up of various pictures and donate them to the cause Dainere , no one would need to know anything about me .

You can let me know via my personal e mail if you think these ideas would help you .

All our love and best wishes to you .

Be strong.

love ,hugs and kisses , feel us HUG you Dainere.

stuart and meryl


Anonymous said...

Hi Dainere

So sorry to hear of your dreadful headaches. I know you are always in pain, & suffering quietly - but your positive & fighting attitude and spirit far exceeds your pain levels, so keep on being strong Dainere. We are all praying for you.

Sounds like your Mum is getting you ready for school. I'm busy doing the same thing with my boys, entering year 6 and year 9. My younger son is the green sports Captain this year & is looking forward to it. My older son begins his first year where he has chosen 2 electives, Commerce and Multimedia/Photography. I'm sure he will enjoy these subjects.

Make the most of being able to rest before school starts again, it's been lovely to stay up late or to sleep in and not rush around. Have you tried any new delicious recipes lately? I've been lazy & not tried anything new like I intended during the holidays but I soon hope I will become engrossed in My Kitchen Rules & begin been adventurous again in the kitchen!!

Fund Raisers are a good idea, I continue to fill a glass/cup with any loose coins I have or find. This builds up quickly and I have a total of $75 for your Brain Tumour research. I'm yet to forward it to Tara as I think "next week", then I have more money collected. So when I reach $100, I'll forward it onto Tara. Each time I see loose change on the ground, I pick it up for you.

Take care, Love always, Fran xoxo

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