Thursday, March 4, 2010


4th March 2010

Today it was a later start than any other day. My first appointment was with occupational therapy, I had to do a writing speed test with the sentence 'The quick brown fox jumps over the lazy dog', I had to write it as quickly and as neatly as I could in three minutes. She talked to us about some more things to help me at school, like having special things that are called 'skis' put on the bottom of the legs of the chair so I can sit at a desk like everyone else rather than in my wheelchair. She is going to contact Therapy ACT to have them come to school to have a look at how they can help me or if I need anything. She also said that going to school for a five day fortnight would be beneficial, that would mean going three days one week (Monday, Wednesday and Friday) and two days the next week (Tuesday and Thursday) that also gives me more variety of subjects.

Our next appointment was with my lovely social worker Catherine, she asked me lots of questions about what I have been doing back at home, she was excited to hear my news. She told me that CanTeen and Camp Quality are joining to form one big support group for kids of all ages. She wants me to keep in touch with her by email. She thinks my book is going to be fantastic and has already requested to have a signed copy of it. Before my next appointment we went back to our room at Ronald McDonald house and I did some knitting.

It was then time to head off for my last appointment of the day. My neurosurgeon was unable to see me but her registrar and the head neurosurgeon saw me instead. They asked me some questions and tested my reflexes, then they went over my brain and spine MRI. They confirmed that I am stable with only slight growth of the remaining tumour and no obvious signs of new growths where my tumour was taken out. However they are concerned over increased enhancement in my lumbar area, thinking it could be what they call seeding which is very early stages of cancer. They said that if the next MRI shows further enhancement then they will have to investigate it further and see where to go from there. This is why I am monitored so closely to catch any nasty things in my body. I learnt something interesting today from them and that is that an MRI shows something more quickly than a lumbar puncture which often shows what they called false negatives.

Tomorrow I have my long and exhausting neuro-psychological test, this test shows where my learning is at. Mum can't help me at all but Theodore can just like he has the whole way through this! Then in the afternoon Tess is coming to see me about my wish.

My sister has been doing a poetry unit at school and she wrote this special poem about me it is written in a special way because it is a type of poem called a Villanelle. Some people cried in her class when it was read and I would like to share it with you.


You are an amazing person,it's true

I admire you in every way

Why has this happened to you?

I can't believe what you have been through

For almost a year you were away

You are an amazing person, it's true

Some days you feel down and blue

Just hope for a better tomorrow today

Why has this happened to you?

I love you, you love me too

Like a rainbow you brighten up my day

You are an amazing person, it's true

I am here to comfort you

If you ever don't feel okay

Why has this happened to you?

You are not alone, everyone's here for you

You are an inspiration to many people today

You are an amazing person, it's true

Why has this happened to you?

1 comment:

Anonymous said...

Hi Dainere
You certainly had a busy day again today. It is really good news to hear that they are arranging for you to have so much extra help at school and that you will be able to sit at a desk as you used to.

With Camp Quality and Canteen joining together it will make for much more opportunities for you and your family to join in activities and outings outside of school and running training. It would probably be really nice for you to meet and make friends with others who are going through similar experiences to yours and who are of a similar age to you.

It is wonderful news that there is no evidence of any growth where you had your operation and that the remaining tumour is stable. It is really good that they are keeping such a close eye on things in the lumbar area. Hopefully that will not come to anything serious.

Good luck with your neuro-psychological test tomorrow. You will be so pleased to get a rest when you get home on Saturday.

If you need any wool or knitting instruction books for bears, let me know, as I have some I can copy for you.

Will talk to you after you get home.

Lots of love
Nan and Pop xxx ooo