Thursday, September 2, 2010


1st and 2nd September 2010

On a wildly windy but sunny Wednesday I arrived at school to discover the whole Grade were sitting together listening to the Grade Leader Teacher, this could only mean that Year 7 had had some issues. I was correct, girls wearing makeup, people not speaking considerately to others, boys climbing on walls and an incident involving an aerosol can and matches. The teacher mentioned that as some people get older they think they can do what they like, but we are still young and have school rules to follow.

Then I had French, Mum had to go to a SCAN meeting about me so Chloe looked after me in French. We had some writing to do from the board, I only managed to write two sentences, both my right and left hands were crippled with pain. There were seven sentences in total, so I missed out on getting them down. We then had a sheet to fill in and Chloe and I worked together on it. Mum came back, the meeting had not taken place due to a communication breakdown from the Department of Education. A SCAN meeting determines whether the school is entitled to funding to assist children in the school who have a disability with their education.

Then we happily went to textiles, we had to make a bead using wool which you spread as thinly as you could, basically it had to look like a spiders web, then you soaked it in water and soap, after that you had to rub it vigorously between your hands, like you are rubbing them together to keep them warm. My hands ached so I did some and then Mum did some and our bead turned out fantastic. I then had to turn my wool weaving that I did on the meat tray into a little fragrant cushion. We cut through the wool at the back of the tray, tied it off then stitched one side, I felt so proud when the teacher told me that I had a good sewing technique and she could see I had done sewing before. After sewing one side you put wadding in then I chose Rain forest potpourri and put that in, then put some wadding on top and stitched it together. It looked and smelt magnificent, we have to keep all our sample work in our special bag, so I know that it is going to smell so aromatic next time I have textiles.

We came home at recess, I had enjoyed my day but my energy was depleted so I had to rest, following my rest I played Upwords and then we were having a very inspirational visitor coming, Sarah, I have mentioned her before, she has an incurable brain tumour, she has walked the Kokoda Trail and she is so positive. When she visited we talked about our diagnosis, our treatment, our doctors and the funny antics they have and how some are not very good communicators, we also spoke about the fun run on 6th November that is raising funds for Cure for Life Foundation and raising awareness about Brain Tumours. Sarah is going to push me in my wheelchair and we are both so enthusiastic about it. Sarah's birthday is on the same day as mine also and I found out that she is a Wests Tigers fan too! Having someone to talk to and listen to who is travelling a similar journey has been such a blessing and it is helping me to be more inspired and positive. It has also made me see how important it is to be part of raising awareness about Brain Tumours.

In the afternoon I watched The Princess and the Frog DVD and I fell asleep for about half an hour. When I woke I worked out my footy tips, this is the last week that we are doing it and Pop and I are equal on 99, poor Nana is on 90 so she is unable to win it, I told her that maybe next year she will win. So everything is riding on the results from this week, I know that Benji and my Tigers will win for me but it is what the rest of the teams do and can you believe it, Pop did not go for Tigers he went for Titans.

My day had been so full and I was exhausted, however due to pain all down my right side and also in my left knee, I did not sleep well and we had to be up early the next morning to take Nalani to the hospital for her pre-admission appointment.

The sun was not streaming through the window this morning, the skies were cloudy, revealing an overcast day. I was so tired but we had to have Nalani at the hospital, on the way in the car I could feel my head drop and jerk back up several times. On arriving at Calvary Hospital they could not find Nalani's name on the list, but we had our letter and they checked, it had been booked on the old computer system, so she was actually there. We went to a room where she was asked lots of questions about her health and then she had the opportunity to ask questions about her surgery. It will take about an hour to an hour and a half, she will be in recovery for about another hour and then taken up to the ward. She will have a drip and a drain coming from her knee but that will be removed before she comes home, she may get to come home that night it depends whether she has any complications. She has to have a brace on and spend a little bit of time on crutches because she can't put full weight on it straight away. When she has her anaesthetic she does not get to have the gas like I do first, she just has it through a canula, that is because she is older. We have to be at the hospital at 7am in the morning of her operation and she is first on the theatre list, at least she won't have time to think about it or have to wait around wondering when she is going to go in. We heard later on in the day that her surgery will not take place at Calvary now, it is going to be at John James, which is further away and we still have to be there at 7am, that is going to be a long day for me.

After her appointment, we dropped her back at school and then I had to go for my blood test ready for my appointments next week in Sydney. Mind you we are still waiting to receive our schedule of appointments which is very frustrating as we don't know what is going on and if they have forgotten to make an appointment it would be too late now to organise one. My blood test was one through my vein and they are so easy, I actually sit and watch the blood run through the tube now, I was given a special tweety bandaid at the end for being brave.

After my blood test we quickly called into the shop to get a bottle and some chocolates for my Father's Day gift for Dad. I put chocolates into the bottle and then decorated it with Dad's name and gold stars, to finish it off I tied a gold ribbon around it and carefully placed a blue butterfly on the ribbon. I hope he will love the gift that I have made him and I can hardly wait to give it to him on Fathers Day.

We had a quick game of Upwords before driving to my appointment to have my hearing aid review. I had to describe how I was hearing now and any situations when I could not hear, it has been decided to organise a transmitter for me and my teacher to have so that no matter where she is in the classroom or how much background noise there is, I will be able to hear her like she is beside me. The unit I will have has earphones and it looks a little like an old fashioned MP3 player, not as slim lined as the ones today, then the teacher has one with a microphone that attaches to her clothes. The audiologist also said that I could use it for class discussions when I work in a group, the kids I am working with could speak into the microphone and take turns to say what they want and I will hear them. I am so excited about this, it will take a week or so for it to come in but the only problem is they have no appointments available at Australian Hearing until November so they are going to get back to us and try to organise an earlier one. I can't help but thinking if my oncologist had of written the letter when we asked him, then I would have had my hearing aid a month earlier and this appointment today would have been to get my transmitter. I also had my hearing checked today, I was quite disappointed to find out that my high frequency hearing in my right ear has deteriorated some more as well as a slight reduction in my mid range hearing. Those side effects from the treatment just keep on popping up and causing trouble for me.

This afternoon was running training, I did not practise my discus and shot put because it is the day before the Athletics Carnival and I do not want to make my arm too tired. I have a feeling that tomorrow will be too much for it as it is but I don't care, I want to do this and nothing is going to stop me, I hope I will be here next year to do it, in fact next year I hope to run in it but I don't know what time I have so I am not going to waste it.

Jarrett went to the paediatrician about his asthma attack at Cross Country, he has been put on a new faster acting puffer called Symbicort instead of his Seretide and he has to go for tests next week, one for his lung capacity and one where they give him Aridol which brings on an asthma attack and under medical supervision he will be assessed as to what occurs during an attack. So it is nothing like the lung function tests that I have had. He then returns to the paediatrician on 15th September to receive the results and to discuss where to go from there. He is able to run and the doctor said that with the right medication he will run just as well if not better than before so that was a relief for him. We will also mention the Vitamin D deficiency that was mentioned in a comment on my Blog and see what the doctor says about that.

I hope I can have a decent night sleep tonight as tomorrow will be a big day, we will go to school in the morning, watch Jarrett run his 1500m at 9.00am, have a break at home, watch Jarrett's 800m and then it is time for my field events, the first one is Javelin at 11.00am, then shot put and lastly discus. They have forecast isolated showers and fifteen degrees for tomorrow so hopefully it will all go ahead.

'Reach for the stars every time you compete in an event, believe in yourself and be proud of what you achieve'


Anonymous said...

Dear Dainere,

I do so hope you are having a good day, weather-wise, in Canberra today for your Athletics Carnival... with little or, even better, NO rain. Today it is cool with misty rain here after being 28(!!) yesterday. 17 has been forecast for today. Hard to get used to this Spring weather! I'm looking forward to hearing about your and Jarrett's efforts in later blogs. Best wishes to you both! And have fun, too.

Textiles sounds great. How you transformed your wool weaving into a special little cushion is very clever. Glad you were congratulated for your good sewing technique. I wonder what you will make next?

So glad you had a great visit with Sarah. She sounds amazing. And to think you have the same birth dates and are both West Tigers' fans! Pretty special!

Yes, last round for footy tips.... I wonder who will win out of you and Pop???

Hope your shedule of appointments for next week arrives soon. It must be very frustrating not knowing what's happening and when. Good you have somewhere close by to stay.

Once again, best wishes for the carnival and have a wonderful weekend with Dad's special day (and present) on Sunday.

"You can weather the storm by dancing in the rain" or throwing the javelin,discus and shot put!

Thoughts and prayers,


Anonymous said...

Dear Dainere,

I work at an Angus and Robertson in Melbourne and a couple of months ago, we had a big pile of your book on our front counter. By the end of one shift the pile had more than halved, even despite your story not being so widely known here in Victoria!

I am also a medical student and I will be telling all of my fellow students about your blog. I think that there is so much that we can learn from you – and hopefully it will make us better doctors to people who are going through journeys as difficult as yours.

Believe me that your story is only going to gain in momentum as more people find out about it. Not only should everyone in the medical profession read it, but it will be an invaluable resource for people of all ages who are facing life-changing illnesses.

Congratulations on continuing your journey with such incredible strength and dignity. You have an absolutely amazing maturity and incredible poise for someone so young.

Good luck for next week.
Love Elisa