2010 COMES TO AN END

25th to 31st December 2010

I can't believe that another year is almost over, it has been a year filled with many highlights like going back to school, doing the Cross Country in my wheelchair and walking over the finish line, getting a hearing aid so I could hear more clearly, Rhiannon organising my rollator for me so I can be more mobile, getting to meet Benji Marshall at Canberra Stadium, win the toss for the West Tigers and then present the trophy to Benji because they were victorious, receiving a telephone call from the totally awesome Short Stack - Shaun, Bradie and Andy and their tour member Liam when they were in Canberra for a concert, meeting some of the most truly inspirational and incredible people: Paul, Tess, Gavin, Ben, Carlos, Sarah, Stuart, Ally, Carol, Cate, Denis, Susan, Tracey, Christine, Tass - my number one Salesman and many others who made such a difference to my life

The most extraordinary event was on the 21st of April when I was granted my Starlight Wish and  my book  'You Have To Go Through A Storm To Get To A Rainbow' was launched, that was such a magical day that I will never ever forget. The funds that my book has raised as well as other activities that I and others have done in the community will hopefully help make a difference to other children's lives who are facing or will face a journey like mine.  My life long dream is to continue making a difference in what ever way I possibly can through raising funds as well as awareness, it is so important and if one person starts then perhaps many more will join and one day a cure can be found for future generations.

I hope everyone had a Merry Christmas filled with lots of joy, my Christmas was phenomenal being around my family.  I received many wonderful gifts and enjoyed seeing the happiness and love that giving and receiving bought on the day.  All the food I cooked tasted simply delicious, it was sad when we began pulling apart the meringue tower because it looked so beautiful.

Having my Nana and Pop here has been magnificent, because of Nalani's knee which is still recovering we are unable to go out much or do any sporty activities we have played some PlayStation games, in one Buzz game it was extremely close between Pop, Nalani and I, it was the last question and Pop got it right and won. 

I will be having my MRI here in Canberra sometime in January, then I have to go to Sydney on the 1st of February I am hoping that I will have positive results.  I have physiotherapy next Friday which I am looking forward to showing Rhiannon what I can do now.

As one year draws to an end and another is about to begin lets all remember not to concentrate on the negatives we encounter in our lives but to delight in any positives, big  or small and our year will be more memorable.

Happy New Year everyone, thank you for following my Journey through the good times as well as the difficult times.

CHRISTMAS EVE

18th to 24th December 2010

Christmas Eve is here, I hope that everyone has been nice so that Santa will bring you a special treat, it is also a time to reflect about the birth of a very precious baby, the baby Jesus.  I have my stocking ready to put out, fresh carrots for the reindeer and a delicious treat for Santa.

This week has been a busy one it began with me using my rollator at the AIS while Jarrett was doing track work and I was able to walk from the two hundred metre start to the water steeple jump, a distance of about forty metres and then back. 

In the afternoon I had a splendiferous game of Upwords with Gloria and Rosy, they had never played it before and we had a fabulous time playing it, it really is a fantastic game.  I wonder if any of you will get it in your Christmas Stockings.

I have been dedicatedly working on my physiotherapy circuit of exercises that Rhiannon gave me to do and feel a little stronger every single day, that puts a humungous smile on my face and makes me feel so proud of myself.

On Monday I saw my Paediatrician and he was so impressed with my progress with my mobility, he has taken me off the phosphate supplements as my blood test showed an improvement in my levels, he is organising my MRI to be done prior to an oncology review and lumbar puncture in Sydney on 1st February.  An issue that has to be watched is my height as I have not grown as I should be and that is a side effect of the high doses of radiotherapy that I had to have during my treatment, my paediatrician will continue to monitor this.

We have had quite a few visitors this week which reminds you that Christmas time is a time when people take the time to see those that they care about. I also sang some Christmas Carols as a gift to my family and Jarrett was my supporting act with his terrific version of We Wish You a Merry Christmas. 

Nalani's knee is looking much better than it first did and she is working hard on her physiotherapy exercises hoping that in the New Year she will be able to bend her knee rather than having it straight all the time and so limited in what she can do.

Nana and Pop arrived from Queensland, Canberra is going to be much drier than Queensland for Christmas so I am so glad that they made it here safely.  Today we spent the day cooking lots of scrumptious treats for Christmas.  We made Coconut Ice, Vanilla Kisses, Mini Chocolate Biscuit Puddings, Dips, Chocolate Cake Pops, Apple Turnovers and my masterpiece was a Christmas Tree Meringue Tower which I have put a photograph of on this entry.  I was exhausted by the end of our cooking day, but I had so much fun whilst doing it, everyone joined in and helped.  Now all that is left is to eat it all over the next few days, I can hardly wait to taste it all.

Well, Christmas Eve is here and I have had such a huge day, it is now time for me to head off to bed, I hope you all have a very joyous and blessed Christmas. 




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GETTING READY FOR CHRISTMAS

11th to 17th December 2010

With Nalani off her feet and me still recovering from my cough we have had a fairly quiet week at home playing board games and watching numerous movies.  Our weather has been far more pleasant than the wild rain and winds of previous weeks.

On Saturday Dad and I bought some new plants for my fairy garden, instead of being overgrown hiding my lovely fairies they are now visible and sparkling in the sunlight beside my delicate new flowers.  I moved one of my solar lights to a higher level so that my garden can be seen more clearly at night time.  Dad put clear estapol on my wishing well to protect it from the weather and it too sparkles brilliantly and looks ever so magical.

I remain on my phosphate, which I have to take two every day, I had a blood test on Thursday and see my paediatrician on Monday, he will review my results and inform me whether I have to continue taking them.  I am excited about seeing him so I can show him how clever I have become at using my rollator to regain mobility.  I am becoming quite a speed demon around the house using my rollator. 

Tinkerbelle is extremely amused and entertained by the Christmas decorations we have put up, she sits on our entertainment unit and plays with the various decorations we have placed on the Christmas tree.  We have Christmas lights in the windows and she loves to watch them change colour.  There is a little gift under the tree for her and the other cats, I think she is going to love helping open it on Christmas day.

Nalani's knee continues to heal, she is not very mobile, I am more mobile than she is so that makes me feel terrific.  She sees her surgeon on Monday also and he is going to remove some of her bandaging and readjust her brace so that she will be able to bend her knee a little, that will make a difference for her, having your knee straight all the time would be exceptionally difficult, when Nalani walks at the moment she walks like a chicken.  We have all being taking good care of her, it will be fantastic though when she will be able to be more independent.

My cough has taken a while to improve, I still have it and I am taking my Bactrim to help it, it is more of a broken cough now which is better because before when I was coughing it felt like my chest was going to break, especially my ribs which hurt for a few days.

I still have my tinnitus which is the ringing in my ears, having had it for so long now, I forget what it is like to not have it.  At night to help me go to sleep I listen to music, it blocks out the ringing a little because it is close to Christmas I have been listening to a Christmas CD, my favourite Christmas song is Silent Night.  Mum used to sing it to me when I was a baby and when I was older to help me sleep, I think it is a beautiful song.  I also love Santa Claus is coming to town, it is one of those songs that once you hear it, it gets stuck in your head.

With Christmas so close I have been looking through our cook books and have planned what I am going to cook this year, I am  going to make coconut ice, apple turnovers, chocolate cake pops, vanilla kisses and my masterpiece will be a meringue tower tree. 

Someone on my Blog asked me about making a donation for Christmas to the Brain Tumour Fund, it is The Sydney Children's Hospital Foundation Brain Tumour Fund and the address is The Sydney Childrens Hopsital Foundation Locked Bag 5 Randwick NSW 2031 and you make it attention to Tara Donnelly.  This is where the money that I have been raising from my book, money tins, walk-a-thons, garage sales and paintings goes to, it goes towards research and rehabilitation programs for paediatric Brain Tumours.  Another fund is the one that Dr Teo set up and that is the one that the Train for the Brain Fun Run and Walk raised money for and that is the Cure 4 Life Foundation that money also goes towards research for Brain Tumours.

I had physiotherapy with the wonderful Rhiannon on Friday and she is very impressed with my mobility and has given me some more strengthening exercises to do, I still experience pain from my stress fractures but I don't complain because there are people who are suffering more than I am.

Last night I went to the AIS with Mum and Jarrett to watch Jarrett run at an Interclub meeting.  He ran in the 1500m handicap race, because he is so fast he was the last runner to take off, giving some runners a two minute head start.  He flew around the track and by the final lap he had caught up to almost all the runners and finished fourth but he would have run the fastest time.  There were disabled and wheelchair athletes competing also, I was in awe of their amazing abilities, the wheelchair athletes have so much strength in their arms.  Watching these athletes really inspired me to push myself to gain strength so that I can be out on that track next season competing again.

Next week will be a busy one with appointments and visits from friends and of course it all culminates with Christmas Day a joyous and special time.  I found a quote in a little book that I was given it is by John Greenleaf Whittier and it says "Somehow, not only for Christmas, but all the long year through, the joy that you give to others, is the joy that comes back to you and the more you spend in blessing the poor and lonely and sad, the more of your heart's possessing, returns to you glad".  I think it really sums up that if you give to others freely and lovingly then your heart is filled with joy and your life is more blessed.

SCHOOL FINISHES AND NALANI'S SURGERY

4th to 10th December 2010

This last week has been a busy one, it was the last week of school which is rather disappointing, I wish I had been able to do the full Term but there is always next year to enjoy.  I feel so fortunate to have had a teacher who nurtured, encouraged and supported me, she is leaving and will be greatly missed by the School.

I had to go to see my General Practitioner this week as I had a burning, irritated throat, was running a fever and had a frightful cough, I felt dreadful but he put me on a course of antibiotics ones which also cover whopping cough as it is going around and he did not want to risk me getting that.  My throat has improved, my fever has gone but I still have a nasty cough but am hoping it will disappear soon.

I have been practising my walking with my rollator and doing my physiotherapy exercising which Rhiannon who I think should be known as Super Rhiannon because she is incredible gave me to do on Monday.  My stress fractures continue to heal but are still painful sometimes but I just try to ignore the pain and stop if it becomes too severe.  I think Rhiannon was so excited when I walked into the physiotherapy room using my rollator, hey I am a little off balanced and limp and  I am definitely not perfect but I am doing my very best.

This week I also found out that Sydney want me to have my MRI here in Canberra before the 4th January when they wish to see me again. I will only go to Sydney for one day and see my Oncologist and have my lumber puncture in same day.  Then in April, I have a huge review which will mean I have to spend a week or longer there.

Today was Nalani's knee surgery, we had to be at the hospital by 7.30am, then her surgery was scheduled for 9am but she did not get operated on until 11.45am.  The surgeon did a MPFL Repair and was extremely happy with the outcome, he even gave Nalani photographs from the actual surgery showing her what he had done, it was really amazing.  She has a large knee brace on her leg, it has a special adjustment on the side that is set at zero degrees because she has to keep it straight.  She was excited that it was only a repair because it will be a quicker recovery for her, she is able to walk on her leg but has to also rest it as much as possible.  Poor Nalani though has been feeling a bit nauseous though, it could be from the surgery or from the strong pain killers she is on which are morphine based.  Hopefully after a good night sleep tonight she will wake up tomorrow feeling much better.  She was very brave and she told me she thought about a card that I had given to her and that inspired her.

The rain has finally stopped, the deluge we have received has been incredible, everywhere is so brilliantly green and water is abundant but it has also caused flooding which has damaged businesses and homes. 

Christmas is only fifteen days away, it is a time to reflect and to give to others let us all open our hearts to those that have been through difficult times or who are struggling this Christmas.

BACK HOME AT LAST

2nd December 2010

A wonderful follower on my Blog reminded me of what Dorothy from the Wizard of Oz said, that there is no place like home and that is so very true.  My latest journey is like having being lost in another world where it was so dark and terrifying, I was so scared and confused and then finally I was seeing a light that kept getting brighter the closer I got to it and that light was the warmth and love of my family and home, I am now safe and happy. 

I am not going to say much about what has happened to me other than I would say the whole experience was more terrifying and upsetting than going through Chemotherapy.  I have put it in the past though and have grown from it.

It is so wonderful to be writing again, I missed it so much, it is an important part of my life and it gives me strength, I have decided though that I will update my Blog each week so it will not affect my health.  Raising awareness about Brain Tumours will always be a goal I have, having goals in your life helps you to achieve your dreams.

I have been back at school and I am now looking forward to the challenges and successes of the school year next year and hopefully I will be able to be there more than the past couple of years, although continuing doctors appointments will keep me away some times.

Now I am back home I have been able to use my rollator, it supports me when I walk and helps me to build up my muscles that have deteriorated so much from having to stay in bed continually for the weeks I was in hospital.  My right foot is still painful from the stress fractures as I begin to put weight on it again but my determination to be out of my wheelchair next year and more mobile helps me overcome it.

Christmas is getting so close, it is the most wonderful time of the year because it is about giving and loving, it is a family time and a time to reach out to others.  Putting our Christmas tree up and decorating it was such a special ocassion for me this year. 

Nalani has her knee surgery on 10th December, she is looking forward to having it done at last but is becoming a little nervous so I have been trying to help her not feel so afraid.  I think if you try to always be positive and relaxed through situations that are stressful or upsetting it can really make a difference.

We have been having dismal weather here in Canberra, the rain has been falling from the skies continuously for a week, the grass is so green and our dams are abundant but as it is now Summer it would be marvellous to have just a little sun shinning through those thick, heavy rain clouds and smiling on our days. 

Thank you to everyone who has continued to follow my journey, you are all very special and I am so inspired by all of you.

DAINERE BACK IN CANBERRA WHERE SHE BELONGS

25th November 2010

With just a month until Christmas which is such a special yet busy time of the year, I am so pleased to let you all know that Dainere and Yvonne arrived safely in Canberra yesterday afternoon.  They went straight to Canberra Hospital which we are pleased to report is a much more nurturing and clean place compared to Sydney.

Dainere now just wants to be back home in her own bed giving Tinkerbelle lots of cuddles, this has been such a dreadful ordeal for the whole family and one which we will try not to let dampen our spirits although it has tested them.

Thank you for all your patience and support throughout the past five weeks.

TRANSFER TO CANBERRA HOSPITAL NEXT WEEK

17th November 2010

A little more positive news today, Dainere is being transferred to Canberra Hospital next Wednesday, there she will be in the capable hands of our own paediatrician.  By transferring to Canberra it means that we never have to deal with the pathetic treatment we have been exposed to here.  Even today we experienced the vindictiveness of a doctor who against other staffs advice would not discharge Dainere, which was extremely disappointing however we must look at the positive and that is being transferred to Canberra Hospital and treated by our own doctor and his team. 

Dainere's MRI and Lumbar puncture have been postponed until January 2011, they had previously been scheduled for 6th December, however we do have to watch for any deterioration in her condition that would indicate changes in the tumour.

The strength and courage that Dainere has been able to display during this difficult, not to mention traumatic experience shows just what an extraordinary girl she truly is and perhaps some of the doctors need to take a lead from her.

We will continue to let you know her progress.  Thank you again for all your support towards all of the family, we don't feel so alone through this because of all of you.

NEWS ON DAINERE

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.

AN UPDATE ON DAINERE

6th November 2010

Latest news on Dainere is that following an MRI it has been found she has stress fractures in her right foot, this means she has to stay off it for a least another two weeks and then it is a slow recovery.  She is disappointed about this but said she had a feeling it would show that as it was so painful.

She was seen by the Renal Team who told us that the Chemotherapy Drug Cisplatin that has caused her hearing loss is also causing problems with the kidneys, hers are not functioning properly and they are leaking phosphate, hence the difficulty in maintaining her phosphate levels.  We were also informed that her Caltrate should not be taken with food as combines and makes it less effective and harders also to absorb phosphate.

Her treatment with Radiotherapy and Chemotherapy will have an effect on her bones and it is something that can be controlled with medication, we are still waiting for any results on the bone density.

Much to her delight, her NG tube was removed late yesterday afternoon, she no longer requires night feeds with the ensure.  In fact she has put on more weight than anticipated by the nutritional team.  Hopefully she will now be moved up to Stage 3 and progress home very soon.

We wish to remind you all that today is the Train for the Brain Fun Run and Walk in Canberra, hopefully there will be a huge turnout to help raise awareness and funds for Brain Tumours. 

Despite what she has endured her smile continues to radiate the ward.

A PAUSE IN THE BLOG BUT WATCH FOR UPDATES

Dear Wonderful Followers

It is with a heavy heart that we wish to announce that Dainere has been medically advised to take a little break from her Blog and be selfish, this is something Dainere has and will never be but apparently most teenagers are.  It has always been her greatest dream since starting her Blog, which helped her through some dark days,  to inspire, encourage, raise awareness and funds for brain tumours in the hope of finding a cure for all in the future.  She has been devastated by this but she hopes to be able to continue her story at a later date. Inspiring others is a wonderful achievement, we are so proud of Dainere and hope that she will continue to share her gift of inspiring others.  We invite you to still keep in touch as she gains strength and courage from you all. 

As a family we have decided that Dainere's Blog and Dainere are important to many people so we will give you some regular updates on her health, of course it won't be written in her unique way.  We would also encourage you to continue to help raise awareness about Brain Tumours.

Love Stephen, Yvonne, Nalani, Jarrett and Dainere xxxxxxxxxxxxxxx

STILL IN SYDNEY AND STILL WAITING FOR AN MRI

2nd and 3rd November 2010


'The wind blows in a certain direction which I can't change but I can adjust my own sails to reach the destination that I am hoping for'


I remain in Sydney with a nasal gastric tube still sticking out of my nose, making my throat sore and in general really bothersome.  I have had another ECG which was absolutely perfect, so no heart problems, I am eating 'king size' meals and finishing them all, there is no way that I want to be told I have an eating disorder and I just want to return home so I am doing everything that is asked of me and more. 


Chemotherapy has reduced my kidney function so it is not functioning at the full one hundred percent, it has to be kept an eye on as it is at eighty per cent but that is not serious.  My bloods have been good including my blood sugar levels, however my phosphate has been going up and down like a yoyo and they are yet to come up with an explanation for that.


My bone density results have come back however as Mum is not with me all the time, I did not understand what the doctor said about them, all I really understood was that she was having them verified by another doctor at Westmead.  The high doses of radiotherapy that I had can affect your bones as well as the chemotherapy, I am on caltrate which is a calcium supplement so hopefully that will assist it. 


I had occupational therapy yesterday and we made cup cakes which I was allowed to have one to eat for morning tea, they were chocolate ones and were extremely light and delicious.  As you know I love cooking at home and do lots of it so this was easy for me, I am not sure if they were testing me to see if I really could cook, I feel so much like that I am been watched or examined under a microscope. 


School is nothing like at home, I much prefer my class and curriculum, I just wish I was there right now, today would be my electives, French and Textiles yet I am stuck here.  In textiles I am missing out on doing knitting and that is something that Mum has already taught me and I think I am quite expert at, now I won't get to show my Textiles teacher how good I am. 


I have still not had an MRI on my foot and Mum has questioned it over and over again and we keep getting told it will get done eventually they are busy and have to fit me in, in the meantime I have to suffer in pain and not know what has happened to it.  There were other tests that they were talking about also that have not as yet occurred.


My nights are still so lonely, I miss Cosima licking my head in the middle of the nigh and purring loudly in my ear and hearing the familiar sounds of my family as they sleep.  When I wake with pain or a nightmare, I can't call to Mum and have her comfort me, I have to stare in silence and pretend she is there.


On the Ward they had a person come and do stretch and relax classes, I was allowed to do them to try to help my muscles as they have been wasting from sitting around and I am not allowed to do my physiotherapy exercises that Rhiannon gave me at all until they know what is happening with my foot.  This is so frustrating, I was just building up my muscles and they are now wasting again, I don't see how this could be helping me progress in any way.  I wish I had my rollator here, I was doing exceptionally well with it, although I would not be able to use it because of my foot, wow what a vicious circle.


In the afternoon I got to see Mum, I count the hours each day until I see her, we always hug each other so tightly, say how much we have missed being together and how much we love each other.  Some people think that girls my age and their mother should not get along, that we should be arguing because I am becoming an individual and resent my parent, but I love Mum so much and I know that she loves me too.  Nalani and Jarrett get along with Mum really well also, we are just that sort of family, why argue with each other life is too precious to do that.


Last night when Nalani and Jarrett called, Nalani told me that she had been nominated for Student Leader for next year, I was so proud and excited for her, I think she really deserves to be selected, she is a generous, caring, responsible person who would put her heart into the position.


I had another huge breakfast this morning and then they are having me do art therapy, which is good, I guess because I like art but sometimes I feel that I am wasting my time here, I could be doing art back home. 


When you are stuck in hospital, you miss seeing the splendiferous blue sky with the wispy, cotton wool clouds floating gently, forming magical shapes, I miss the sun shinning down to warm my face and fill me with hope and the fresh air that enters my lungs and helps me breath.  Each day I am here, is  a wasted day that I could be making the most of.  I am hoping that I will be able to adjust my sails and sail home in the wind very soon.

MISSING HOME

31st October and 1st November 2010

At night when I am lying in my hospital bed holding Theodore tightly for comfort, I shed silent tears, I am missing home so dreadfully and not having Mum close, even though she is in Sydney, we are not in the same place at night.  My nightmares that I used to have about been behind the door and calling to Mum and her not hearing me have started again.  I am scared, at least when I have been through all the other difficult times throughout my journey, Mum has been so close. 

My weekend was as good as it could be considering I was stuck in hospital, Mum was able to be there apart from at night, which made the sun shine within me.  We had dinner together on both Saturday and Sunday night, almost like home except the rest of the family were missing.  We were able to go for a walk around the hospital grounds, my eyes hurt at first because I had not seen the light or experienced the freshness of the outside air for over a week. 

I still have the nasal gastric tube and it is beginning to become irritating, it is itchy and it actually hurts near the corner of my nose where it is inserted, the nurses told me that people often get ulcers from them and that is what they suspect will happen to me, so once it is out, I will be given some cream for it.  The doctor told me yesterday that it would be coming out soon but would not give me a definite day.

Hopefully today I will have my MRI on my right foot, it still not been done and my foot is extremely painful, I try to relieve it with deep heat and Mum rubbing it when she can.  I attempted to put some weight on it yesterday and nearly flew through the roof, I wish I knew what was wrong with it so I could start some rehabilitation for it.

This morning I had my blood taken again, you should see my arms, they have holes everywhere from all the blood tests and are very bruised, talk about been a pin cushion.  An ECG is supposed to be done today, the other ones were fine, they just wanted to check one last time to make sure there is no problems with my heart.  My pulse rate and blood pressure have all been great although my blood pressure is as always was on the low side.

Mum called me this morning before I went to school, I was so pleased to hear her voice, I will not see her until later this afternoon unless she is called in for any of my appointments.  They should of let her go with me for my bone density on Friday because there were questions about the family history that I could not answer, so Mum had to let the doctor know and then it had to be passed on because it was important. 

School is not like at home, I miss my Teacher and my friends at school, also because this is New South Wales the work is very different to what we do back home at school.  Not only last year did I miss school, I have missed quite a bit this year due to my follow ups every three months and now this. 

Someone said it is overcast outside today and quite cool, I would not know being stuck in here but hope the sun will shine very soon and I will be back home and able to enjoy my life again.

IN SYDNEY STILL

29th and 30th October 2010

'There is a star that shines for me....it gives me love and sets me free.  There is a star that shines for me.....it shines for all tonight'

I saw this quote on a piece of artwork hanging on one of the walls of the hospital when I was allowed to go for a half hour walk from the Ward.  I am going to be in Sydney for a little while longer while they do numerous tests to try to find out what is going on with my body. 

My MRI has not been done as yet, so I still no answers about my foot, so until I have the MRI and we know what it is I am unable to do any weight bearing on that foot and no physiotherapy has been done.  I went for my bone density test though, it was similar to an x-ray but a machine ran over the top of me and took images, I had to maneuver into different positions that they told me to. The results of that should come back next week, it has already been established I have osteopenia but the bone density will determine whether I have osteoporosis also and then I will require treatment for that. 

I went to school in the afternoon only, I go with the High School students and we did some handwriting and I had to write a recount of my morning, I did not have access to a computer so this was difficult and tiring for me, my right hand became tired, so I changed to my left, it is so useful to be able to write with both, perhaps everyone should try it because you never know when you may need it.

The weekends are terrific when you are in hospital because tests can't be done, apart from my blood test which I have to have every single morning.  Mum is able to be with me for just about the entire day, Mum and I are very close, I love her so much.  She is also allowed to have dinner with me tonight, she has had to have take away because she was moving from place to place all the time, she said she felt like a gypsy but now she has a place for a few nights.  Mum has to bring her own food for the dinner and I have the hospital food, it will be great to have a meal with her and feel normal for a night.

I still miss home dreadfully but I have decided that the time will go very quickly and before I know it I will be back home with Dad and the others, in my own bed and doing the activities I love to do.  I wish that there was a children's hospital in Canberra, it is so distressing for children to be so far from home when they are not well, that is the time that you need to be in your home with all the people who love you.  Maybe there is some way that a hospital for children can be built, we are the Nations Capital after all.

Some good news is that my blood sugar levels which had gone high for no apparent reason and they were talking about diabetes have now come back down to a safe level, at least I have some good news to share.  I also have some non medical news to share about Jarrett, he ran at Interclub last night and in the 1500m he did 4:16:00 which is terrific because in March at Olympic Park he ran a 4:19:00 so that is a personal best for him, then he ran in the 400m and did 57:00, another personal best, I am so proud of him.  I am hoping that next year I will be there doing personal bests of my own.

Thank you again to everyone, you are all helping me to get over another hurdle, things are still not great but I have found that strength from within to move on, they can poke and prod me all they want and I will be courageous and accepting of it all, the one thing that truly hurts is Mum and I being away from Dad, Nalani and Jarrett.

LATEST UPDATE

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" 

LOOKING BRIGHTER

This is Dainere's Dad writing to all her followers and viewers.
Dainere's treatment has taken a turn for the better and wants everyone to know that she is in good hands now as a new team has been formed to treat her.
She expresses her sincere thanks for all the wonderful support, comments and best wishes for her that people have written.
She'll be back at the computer real soon.


Take care and thank you all for your positive support.


Stephen

MY TRAUMATIC EXPERIENCE CONTINUES

24th to 26th October 2010

Having to be without Mum was absolutely devastating, I felt like I was been punished but for what crime I do not know.  I hugged Theodore as tightly as I could and he gave me a little comfort in this cruel situation that has left me feeling so confused and hurt.

When Mum arrived on Sunday at 9.30am we both hugged each other in the tighest hug you could ever imagine.  When Mum is with me I feel secure and safe when she is not there I am so scared of what may happen to me.  I have felt like a prisioner, treated like I have committed a crime but it is not me who is in the wrong, I have done everything possible in my journey to do the right thing, listening to the doctors, being brave and taking each painful procedure in my stride. 

I was told to walk which I am able to do a little of, but I was given no support and I do not have my rollator here so I was extremely off balanced and wobbled, my right ankle has been re-injured and is swollen and painful.  The fact that I have had a Brain Tumour has not been considered, I am not an ordinary twelve year old, I have been left with side effects from my tumour and the treatment, this is something I can not help.  It did happen and I can not change that so I am so confused as to why now it is not cared about.

Please if you are having chemotherapy and lose more than ten per cent of your body weight request that your doctor do something about it, don't just accept that you will pick up later.  Also when you finish all your treatment ask that you are given a dietary plan, I ate well but it was not enough apparently and now I find myself in this dispicable situation.  I want to help others so that they won't have to go through this. 

Dad arrived on Monday together he and Mum can work as a united front to sort this all out.  My paediatrician at home was looking after this, what has happened is not right.  Why am a pawn in the middle of this and being categorised without a proper assessment, I am confused and scared.

My ankle is so sore and swollen, I have to go to have an xray, perhaps some serious damage has been done to it.  Another hurdle and just when it was going so well, this whole experience has been such a horrendous storm but I still hold the hope and remain positive that my rainbow will appear very soon and my life can bring me some happiness. 

Life is too precious to waste, there are so many things I wish to do and this is wasting my time, that I can not go back and retrieve.  Thank you for all your support, comments and prayers I hope that I can update you with some positive news soon.

ARRIVING IN SYDNEY AND NOT WHAT I EXPECTED

22nd and 23rd October 2010

I was so nervous as I waited to go to the airport for my unexpected flight to Sydney, the butterflies were fluttering at a hundred kilometres an hour and did not want to stop, I also had this terrible feeling like the ones I had during chemotherapy when things did not quite go as expected.

In the morning when Jarrett and Nalani went to school, they were both crying and so was I as I gave them a huge loving hug.  Jarrett asked if he could come to the airport with us to say goodbye but we told him that school was more important. 

After checking in at the Qantas desk we were told that the plane we would be flying on was on the Tarmac and we would require a special lift to get me onto the plane.  We waited patiently for the special assistance person who was helping us to come.  We got to walk where all the action was taking place with the busy Qantas Staff getting everything ready for various flights.  I looked ahead and saw a spectacular bright pink Dash 8 aircraft sitting on the Tarmac, it was a special breast cancer one, it was our plane.  The special lift came and I got to go in a little wheelchair and went up in the caged lift, it was quite an adventure.  On the plane our seats were right near the propeller so I could see it slowly start to gain speed and take off.  I thought having a pink aircraft was a good omen.

On the plane I remained quiet and in deep thought, I know that I am a strong person and very determined but do I have to face this many obstacles and being dragged away from my home and family makes me feel angry and upset.  When I mentioned to the Airline Attendant that I was going to hospital in Sydney, he went and got me a whole pile of raspberry cream biscuits and said they would be better than hospital food!  That was so generous and thoughtful of him.

We arrived in a hot and streamy Sydney and I still had those butterflies fluttering around in my little stomach and then we went to admissions we were told that there was no bed available until 4pm and we had been told by our doctor we had to be there by lunchtime.  So we left our bags at admissions and went for lunch, I enjoyed some strawberry and cream pancakes with Mum and I had a Coke Spider, they put heaps and I mean heaps of icecream in a large glass and gave me the can of Coke, I poured a little in and immediately it bubbled and rose to the top of the glass.

Mum and I decided that because we had a couple of hours still to waste we would take a walk down to Coogee Beach, we were half way there when we received a call from the Hospital to say the bed was now ready.  So Mum had to walk back up the hill as quickly as she could and the hill down to Coogee is rather steep.

I was admitted and given a bed, I was expecting to see a Paediatric Cardiologist which is what we were told but suddenly I was surrounded by all these other specialists, I had blood taken, blood pressure done and weighed and measured, I had still retained the weight that I had put on when I was measured in Canberra on Monday so I was happy with that. 

Mum asked when the heart monitoring would begin and we were told that we would be seeing a Nutritional Team instead.  Mum was not impressed, all of this could have been done in Canberra under my wonderful paediatrician and if he had of thought it necessary he would have sent me to Sydney,  we had gone to Sydney and really had not needed to, I think they just like to control everything and don't think our doctors in Canberra are capable. 

Anyway while Mum was taken away to talk to a doctor, I was whisked away and a nasal gastric (NG) tube was inserted into my nose and down my throat, I had one after my surgery and it is the most uncomfortable feeling and it is difficult to swallow with it in. 

My weight has been slow to pick up since my ordeal and during Chemotherapy it plummeted and the doctor saw no real urgency about it.  I had just been eating  really well, putting on weight and feeling much better within myself so I could not believe they were doing this to me, I asked for Mum but they told me she could not be with me, I was so terrified I lost my voice, almost like mutism and could not speak but I wanted to tell them no! not without Mum, Mum help me!  I cried and when Mum returned from talking to the doctor she was taken by surprise, she had not given permission for this to be done to me. 

An EGC was done of my heart and everything was fine, bloods were done my potassium and phosphate were a little low so I was put on a supplement as well as some calctrate for my bones, this again could have easily been done in Canberra.  Through the NG tube I would be given Ensure at night it puts weight on rapidly but the only problem is that if it is done too suddenly then other problems can occur. 

I had a dreadful night sleep, I felt uncomfotable, frightened and just wanted to go home, Mum slept in a chair beside the bed and said it was terrible but at least she was there beside me as usual.

This morning things went from bad to worse, they gave me less food to eat than what I do at home, I can't understand what is going on and they are trying to say I am like an annorexic person, but I am not, I eat, in fact I have been eating well, I certainly don't make myself sick after eating or go out and do crazy exercising either. Mum is not allowed to stay with me and they are sending her to a Lodge it is like they are blaming her but my Mum always looks after me.

Worse still is that because of where I am, Mum can only visit at certain times from tomorrow, from 9.30am to 8.30pm tomorrow but on Monday I will only be able to see her from 4.30pm to 8.30pm, I am so frightened, I don't want to be alone, I am scared that they will do something to me again without Mum's permission, this does not seem right.  I know that my weight is a little low but Jarrett is on the bottom three percentile and he does not have to have this done, my Nana, Uncle and other members of our family are only small, they have fast metabolisms that burn fat quickly, I am probably like that it would most likely be hereditary like low blood pressure. 

My heart rate is perfect., my blood pressure and all my blood tests are good, I am in no danger of having a cardiac arrest now and probably never was and my seizures are exactly what my paediatrician said they were from the Brain Surgery, so I should now be able to be released home. My friend Emily was going to come visit me today to cheer me up and so was Tess but we were told to ring them and cancel it as they did not want me to have visitors.  I am not sick, I can not understand this, I have been crying lots and then they are trying to say it is about my weight but it is nothing like that it is because I want to be home, they won't listen to me, it is awful.

At least I have Theodore with me, he has been through everything and I know that through having him there again I will find the strength to get through this and get back home to Canberra as quickly as I can with my paediatricians help.  Thank you for all your truly wonderful and supportive comments as well as touching stories to help me through.

A TELEPHONE CALL THAT HAS TURNED MY LIFE UPSIDE DOWN

21st October 2010

This is a special Blog entry today, it is another twist in my journey which has turned my life upside down and has made me more disconsolate than even my diagnosis with a brain tumour.  Late yesterday afternoon we received the deplorable telephone call from Sydney.  They wanted me to organise to get there as quickly as possible because they had reviewed information about my seizures with other medical professionals, along with my weaker pulse and blood results, they are deeply concerned that what we have thought to be seizures may be mini strokes.  They are admitting me to hospital for tests with a Paediatric Cardiologist, you see there is a five per cent chance after having my high doses of radiotherapy and chemotherapy that there can be heart damage and the possibility of stroke.  Mum questioned some things and they told her that they felt they wanted to see me sooner rather than later and if anything happened overnight she was to take me to hospital immediately.  Well nothing did happen, except for my usual pain and joints stiffening so this call has left us all really puzzled.

Even though I face pain each and every day and I am debilitated when I do have the seizures which is what I will still call them unless diagnosed otherwise, I actually am feeling well considering all I have had to endure and will always retain a positive outlook, so you can see why this telephone call really hit me like a ten tonne brick.  I have so many wonderful events and experiences coming up at school and home, I don't want to miss out on any of them especially the fun run and my Raising  Awareness presentation, I would be absolutely devastated to miss them and there is no way that I intend to miss them.

Today I went to school, it was to help me to forget about the telephone call and it did because I was so occupied doing Australian Studies in which we were given an assessment task about the Australian Flag, it is an assessment where you have to put much thought and creativity into it.  After Australian Studies it was double Maths and we were working on a Rich Task where you choose the work you are going to do and gain stars for completing it.  I did a Glossary of Terms for Angles and earnt two stars and then did two worksheets they were both worth two stars each also.  We have to have achieved a certain number of stars by a given date.  Even though my mind was in a total whirl today, I am slowly starting to really comprehend angles, practise certainly does pay off. 

When we came home at Recess, Mum had to organise our airline flights for tomorrow, as well as reorganising and cancelling numerous appointments that we had.  Once at home Mum and I both sat down and cried together, Mum takes such good care of me and thinks it is so unfair that I have to face so many hurdles.  I just want to have a life, I am trying to move on and make the most of each and every day but this is like Mount Everest appearing in my path and I don't know how I am going to climb it.

In the afternoon we had running training, it was a lovely Spring day with just a gentle soothing breeze in the air, so Mum and I went for a walk around the oval in my wheelchair, the fresh air really clears your head, if I can't go over this mountain then I will go around it before attempting to climb it.  We saw a family of rabbits nibbling the lovely, thick green grass, normally as you approach them they hop away nervously but today one rabbit just sat there nibbling, we were so close before it hopped off into the safety of its burrow. 

I will keep you all updated on my progress in Sydney but now I have to go and pack my suitcase ready for our departure tomorrow morning.

'Sometimes we let fear stand between us and our rainbow but if we have courage, our hopes and dreams will lead us to our pot of gold in life'

SCHOOL AND BLOOD TEST

19th and 20th October 2010

The weather in Canberra is definitely improving which is wonderful because at this time of year we should all be rejoicing with warmer weather and longer daylight hours.  Yet again I had experienced a dreadful night sleep plagued with pain especially in my right heel, you know the kind of pain that no matter where you place your leg it seems to get worse rather than better.

This week is my two day week at school, I had Science first which we did some research on our Science Assessment in the Library.  I did some reading on the Moon and how it has different phases, it was really interesting, I will now look at the Moon differently when it appears glimmering mysteriously in the evening sky.  After Science it was time for English, we were working on a worksheet from the day before on Cathy Freeman, one of the activities was to find a page reference for a sentence that was written, I think doing this sort of activity really assists with research skills.  We then watched a You Tube documentary on camera angles in a motion picture, there are so many different ones compared to still photographs that we learnt about earlier in the year.  After English it was time for Maths, we are learning angles, this is probably the most difficult and challenging area of maths that I have come across this year, I will have to do extra practise so that I can really understand it with confidence.

When we came home at recess I was really exhausted, I needed to have a rest, afterwards I read Pocahontas, played Upwords and then we had to take Nalani to the doctors to have her wart scraped off and then refrozen, it was good news for her because it looks like there are no roots remaining so it should now disappear. 

In the afternoon I had pain and a stinging sensation in my left palm it was dreadful and nothing I tried would make it disappear.  Jarrett had running training and even though the weather was quite pleasant, I did not feel up to going for a walk around the oval in my wheelchair because the surface is a little uneven and the bumps would make my ankle and heel painful, I already had enough pain and did not want to have to have more to cope with, so I did some activities in a Christmas Activity Book.

I rode the exercise bike again at night time after dinner but not too close to bedtime, I was only able to ride for ten minutes because my right knee began to stiffen and click as I was pedalling.  I have not had too many problems with my right knee lately, most of my problems have been with my heel and ankle. When I got off the bike my knee was all hot and swollen and I was unable to bend it straight, Mum had to massage it so that I could straighten it out properly. 

During the night and early hours of this morning I woke with pain in my right hand, the pain then was accompanied by pins and needles which actually felt like they were vibrating all along my arm, I had nausea and then when I was sitting after breakfast something occurred, I had another seizure. The last thing I remember was having a little pain on the left side of my head and then my right arm had dropped again and was so heavy and painful, then I felt like I needed to sleep, it was like I had competed in the Commonwealth Games Marathon and I had no energy left.  Mum put a sling on it to elevate and support it which always helps.  I  could not move it at all but by lunch time today it has regained a little strength but remains painful and very weak. 

I had to have my blood tests done that my paediatrician had requested on Monday when I visited him, blood tests are simple, I sat there calm and smiling as the pathologist put the needle into my vein, I even watched the blood flow from my vein into the vials that it is collected in, some people are unable to watch as it makes them feel ill.  Usually the veins in my right arm are the best ones to take blood from they are larger for some reason but today they had to use my left arm because of my right one being in the sling and paralysed.  It was all over before I knew it and Mum applied pressure while the vials were sorted out then I was given a Tweety Band aid to go over the insertion spot. 

The sun was shinning from our brilliant blue skies in Canberra today, happiness filled my heart even though I was in pain and still felt 'strange' from the seizure.  I think of the sun as God smiling down on the Earth, in awe of all the wonders of nature and his love for all the people. 

It is difficult for me to type today because of my hands so I have kept it short and sweet, may love and hope fill your hearts when you look at the beautiful sunshine shining down on your life. 

STILL COLD ON SUNDAY AND PAEDIATRICIAN APPOINTMENT MONDAY

17th and 18th October 2010

On Sunday the weather still remained wintry with a wind that chilled you to the bone, yet if you found a sheltered corner of sunlight the glorious warmth provided a comfort, like a large, soft, fluffy blanket wrapped around you.  

Jarrett had his running training, Sunday's are always a long run from the AIS, he ran for an hour and pulled up strong which was terrific considering he had run 3.8km in total on Saturday night.  We went for a walk around the AIS and were lucky enough that most of the paths we took were sheltered from the wind.  

I came home and read, then played Upwords, as I was sitting playing Upwords, I had dreadful pins and needles travelling through my heel and ankle which was followed by pain which felt like extremely sharp needles were been dug into my skin and through to my bones, it virtually took my breath away.  I needed to sit with my feet up, heat around my ankle and heel and panadol to help ease the pain.  

Luckily by the afternoon it was feeling a little better because we were going to a working bee to help make ribbons for Brain Tumour Awareness Week for our politicians to wear on their last sitting day in Parliament. We cut, pinned and dipped the tips of the ribbons in glimmering silver glitter.  The ribbons are grey, when we speak of our brains we often hear them referred to as grey matter.  By the end of the session we ended up looking like fairies all sparkling magically from the glitter.  We also discussed the Train for the Brain Fun Run and Walk which is on 6th November, it is going to be a spectacular day and Sarah is really looking forward to pushing me.  The Train for the Brain Fun Run is being held at 10am at Lake Burley-Griffin.  The two primary goals of this event are to raise awareness in the community about brain tumours and secondly to raise funds for Dr Charles Teo’s charity Cure for Life Foundation.  If you are interested in being part of such a special day you can register at http://trainforthebrain.yolasite.com/ or from 8am on the day at the venue.

I was really fatigued and my hands were both inflamed and painful but helping for such a great cause was worth the pain.  After a shower and rest I felt more refreshed and decided after dinner to ride the exercise bike, even though it is not a weight bearing activity it is helping to build the muscles in my legs back up which have all withered away terribly from my treatment and not been mobile.  I rode whilst watching Junior MasterChef and ended up riding for twenty minutes, at the completion of my session I found that I felt a little dizzy as well as my ankle was really swollen, I did not realise when I was riding, it was probably because of the distraction of watching television. 

Snuggling up in bed with a hot water bottle and my bears comforted me and I just wanted to have a good night sleep.  I can't understand why I must be plagued with pain and stiffness throughout the night, again I did not sleep well, when I don't sleep well neither does Mum, I wish that both of us could just be blessed with one night that we sleep without disturbances. 

The sun greeted us this morning but it was deceiving because the wind had a chill factor that was like being locked in a huge meat freezer.  I did not have school today which I was relieved about because my weekend craft activities had left me with weakened hands especially my right one.  I did some reading while Mum did some housework and then I worked on my Raising Awareness Integrated Studies Assessment Task, as I typed up my research notes I was amazed at the statistics about Brain Tumours.  Did you know that three hundred children in Australia each year are diagnosed with a brain tumour, men are more likely to have a primary tumour than women and that brain tumour research receives only a minimal amount of funding from the Government compared to other types of cancer.  All the more reason for me to remain passionate about raising awareness and funds for Brain Tumours.  Once I present my information and action plan at school I will write more that I have found out and what I hope many Australians can do to raise awareness.

Even though I enjoyed working on my project, it really fatigued me, so I needed to have a rest, I fell asleep for half and hour.  On waking I played Upwords, Disney Princess Memory Game and did some physiotherapy for my left wrist by working with playdoh. 

In the afternoon I had a splendiferous visit from Anna, you may remember me posting a picture on my Blog of my book visiting Greece, well Anna is the wonderful person who took it over there.  She shared my story with all her Greek relatives and one of her relatives Popy sent me a beautiful message on a digital postcard of Greece she said "We hope that every child around the globe takes courage and strength from you.  I was really moved after reading your book and I assure you that all my Greek students will learn your story and how special you are".  I was so touched by the message and it made me realise how important to everyone it is to share my journey and to continue sharing it. 

It was then time to go to my appointment with my Paediatrician, he is a very caring and understanding doctor, he did a thorough examination of me.  I have put on a little weight and now weigh 29.3kg, but my height has not changed any and usually for a person my age you are going through a growth spurt.  The radiotherapy can cause this to occur and that is why the endocrinology team are looking at the possibility of me having to have daily growth hormone injections.  My blood pressure was good, my pulse was a little low and my skin was cold to touch, I had no ankle jerks when they were tested.  We had written a detailed description of what occurs when I have had seizures and on what dates, he is going to monitor them and if they become more frequent I will require medication however it does have side effects so he does not want to rush into giving me that particular medication.  I have to have blood tests done on Wednesday and he will then contact us once he receives those results, more tests will be organised based on those results.  He is contacting my Sydney team tomorrow and he wants to monitor me more closely, I now need to see him every month. 

I am going to ride the exercise bike now, when I am doing that it helps me to feel that little bit free and normal.  My heel and ankle are deplorably painful but if I can just get my muscles that  bit stronger each day I will be able to take small steps, I think I will set myself a goal of being able to walk with my rollator two laps of the kitchen and family room by Christmas. 

I found a beautiful Irish Blessing I would love to share with you all, thank you for always supporting me, I am truly blessed.

'May the wings of the butterfly kiss the sun

And find your shoulder to light on,

To bring you luck, happiness and riches

Today, tomorrow and beyond'.

A WET FRIDAY AND SNOW ON SATURDAY

15th and 16th October 2010

We had a barrage of continuous rain falling steadily overnight and the grey, thick,  heavy clouds appeared to be ready to dispose of their abundant load throughout Friday.  As anyone with any sort of bone or muscles complaints knows when it is damp and cool the condition becomes worse and my body felt just like the dogs breakfast a total mess.  I ached, it hurt to move and the pain caused me to feel miserable, yet I knew I had to go to school. 

The rain was accompanied by arctic winds that whipped and swirled around my umbrella that I was attempting to keep myself dry with on our journey to school.  The wheelchair went through deep puddles of water along the footpath and it was a day that you could easily have just given up and stayed in the warmth of home.

We entered the classroom a little wet and cold but we were able to warm up as the classroom was much warmer than outside.  We had Integrated Studies first and were doing a Quiz on Government, we were put into groups and Mum was told that she could not assist our group.  We did extremely well and ended up coming second overall.  I realised afterwards that I should have had the group use my FM Transmitter so that I could hear what they were discussing more clearly but it does take just a little time to set up and the questions had already started to be asked. 

After the Quiz we had double Science, our lesson was in the Library and the Computer Room because we were given our assessment task which is also due in Week 4, the same as our Integrated Studies one on Raising Awareness.  We were able to choose which topic we wanted to do our assessment on and then researched it in books and on the computers.  A really strange thing happened to the computer and three others around me when I was using one, it totally blanked out and so did the other three, no one else's in the room did, it was really weird and the teacher had no explanation for it either. 

I was so pleased it was time to leave school and go home because it was too wet and cold, my pain was becoming worse and I just wanted to be able to warm myself up.  The wind had increased and I could not find the best way to hold my umbrella to prevent myself from getting wet, I ended up with extremely wet legs and feet, I had to be dried off and changed when we arrived home.  A lovely hot chocolate warmed my inside up and we turned the heating on to warm our body on the outside. 

I did some reading, had a rest , took photographs of my Christmas Bear for a collage and dressed my Barbie dolls.  I was so pleased to be warm and dry, unfortunately my pain did not ease much during the day even with the heating on, heat packs and pain killers, I guess sometimes when the weather is the culprit there is not too much you can do, you have to just grin and bear it which I am quite expert at doing.

My night was plagued with pain and discomfort, I woke several times throughout the night and early hours of the morning, then I slept in until 8.30am which is unusual for me. I felt a little nauseous upon waking probably from lack of sleep.  Mum came and got me and told me she had something special to show me, she took me to our family room window and there outside were soft, delicate flakes of snow falling from the sky, some had settled under the trees in our back garden but most were melting once they touched the ground.  It was a Winter wonderland and I was totally in awe of what I saw, snow falling is so exquisite.  The weather was freezing so I did some reading, learnt Baa Baa Black Sheep on guitar and typed a Christmas list. 

Fortunately as the day progressed my nausea improved, I wish my pain would do the same, but because it was so cold my pain had remained fairly intense throughout the entire day.  Jarrett had Interclub which is the Summer Competition of Athletics, it was on in the evening, we all had to rug up as if we were going to the snow; gloves, beanies, scarfs and jackets.  Jarrett ran in the 800m first, he was in the second heat, it was a curved line start, the gun went off, the runners took off but Jarrett slipped on the starting line and was coming last, however around the first bend he had fired and took the lead which he held until the finish to come first. After I saw him fall I willed him to do well, I was even almost running with him, I was moving my legs up and down in my seat in the Grandstand.   While Jarrett was running Nalani was working as an Official, firstly she was on Shot put doing the recording and then on Javelin which she collected the Javelins to take back to the competitors.  Jarrett ran the last event of the evening which was the 3000m that is seven laps of the track and they start at the 200m mark.  This time Jarrett had a good start and was running up with the elite runners in the first few laps, he ran a terrific race to be the first Junior runner across the line and he had no asthma or vocal chord problems although he said he had to use one of his breathing techniques half way through and it worked. 

We came home for a hot chocolate and to snuggle into our lovely warm beds, it had been cold at the AIS but we were sheltered from the winds in the Grandstand so it was not as harsh as it was if you were out on the track.  My feet had got a little cold though even with thick socks and enclosed shoes and my ankle and heel throbbed in bed, so Mum gave me a heat pack which made a huge difference and I eventually fell asleep.

'Never give up, keep racing your race because those that love you will always be there gently lifting you and  pushing you along'

ELECTIVES, ACT CROSS COUNTRY CLUB PRESENTATION AND TINKERBELLE'S 1ST BIRTHDAY

13th and 14th October 2010

During the night the rain came tumbling down, the heavy drops were battering rapidly against the windows and the ground was saturated. The damp weather made my right ankle, knee and heel pound with pain and my left wrist became stiff and painful, hurting even to bend slightly.


The heavy rain continued into the morning so I had to arm myself with my umbrella before venturing outside to go to school. Even with an umbrella my legs and feet still got wet, which made my heel and ankle ache more severely. Once in the warmth of my dry classroom I began to dry off and felt a little more comfortable. We spent the first half hour at school discussing our Integrated Studies Task and what the different possibilities were for topics.


We headed into French with the rain still bucketing down in torrents, this Term we are learning French directions ready for our assessment which will be using a map to give written instructions in French for a person to find certain locations. I am actually finding the vocabulary used for directions much more simple than for food. This is a short Term so we have a lot to fit into a short period of time.


From French I had to put my umbrella up to head across the bridge into Senior School where my Textiles classroom is. We finished off our keyring weaving that we began before school holidays, I was really pleased with how mine turned out. I then started on a different type of weaving, it was one using a card with four holes, one in each corner, I had to thread a piece of wool through each hole, then I had to have the card in the middle and tie a knot at either end of the four pieces of wool. I then cut a piece of wool to weave through, you went through the space then you turned the card on a new axis and weaved the wool through again, you kept repeating this, what it makes is a friendship bracelet, I have not quite finished yet but it won't take long next lesson to complete it. Then we are going to begin knitting, I can hardly wait to do this because Mum has already taught me to knit and I have become rather expert at it, although if I have problems with my hands then I am unable to knit.


The rain had eased slightly as we signed off for the morning and began our walk home, Mum even commented that it looked as if it was pouring, then suddenly a deluge of rain began to fall and we were caught in it, fortunately we were almost home when this happened, my feet and legs were wet and had to be dried and Mum who can't carry an umbrella when pushing my wheelchair was soaked to the bone.


After drying off we had a hot cup of milo which warmed us up from the inside, I needed to have a rest, I was feeling fatigued but my left wrist was also swollen and painful, I enjoy my textiles and it was becoming painful but I did not want to say anything, I think I should have because the pain had begun to shoot up to my elbow and then it was difficult to bend it.


I did my physiotherapy exercises but did not ride the exercise bike because my ankle and heel were too inflamed and painful, I did some reading to myself and Mum and I had a game of Upwords.


We heard from Sydney and had to contact my paediatrician and I have an appointment late on Monday afternoon, he will then do a thorough examination and organise tests that I need to have done, after that the results will be communicated to my Sydney Team.


At night we had the ACT Cross Country Club Presentation Night, it was extremely exciting because Jarrett won a medal for being the U16 Male Champion as well as a Goblet and large Trophy for being the Junior Male Runner of the Year 2010. I was so proud sitting there seeing Jarrett receive his awards, he truly deserves them because he is so dedicated to the sport and his training. I think receiving the awards will also boost his confidence after his problems with his asthma and diagnosis of vocal chord dysfunction. Jarrett is always so humble when he receives awards and he told me that the awards that he won were for me also because I inspire him in his running.


I was extremely tired as we drove home in the rain and I fell asleep in the back seat of the car, Mum gently lifted me out but I woke up. I had a warm cup of milo and went to bed hoping for a decent night sleep. I would love to announce that I had a marvellous night sleep but unfortunately yet again I had another disturbed night again with pain and joint stiffness, one day, I will eventually have an uninterrupted night, I can only dream that will be soon.


Today was Tinkerbelle's first Birthday, I had made her a rainbow pom-pom ball and when I gave it to her she played with it for ages, picking it up in her little paws and throwing it, pouncing on it and just lying with it and patting it ever so often from paw to paw. Tinkerbelle has comforted me, loved me unconditionally and made me laugh often, she was a wonderful gift and I love her so much.


I worked on my Integrated Studies Task today, doing up a mind map of what I would like to include in my presentation. I am so excited because when I do my presentation it will coincide with International Brain Tumour Awareness Week, so I am hoping to actually encourage people to take part in at least one of the activities that are organised to raise awareness.


Working on my project tired me, so I had a rest before answering some emails and watching Disney Beauty and the Beast which is my favourite Disney Princess Movie because Belle is such a strong, unique and caring person, she overlooked the ugliness of the Beast to see his true inner beauty on the inside. So many people are wrapped up in what they look like on the outside and forget that true beauty comes from within you and makes you more beautiful on the outside. I have scars, no hair in spots and a different shaped skull now, I don't care, because it is not what is on the outside, I am warm hearted and my inner glow is what makes me special.


We went to running training and Mum finished reading the Cathy Freeman book 'Born to Run' to me. She spent seventeen years waiting for her dream to come true of winning a Gold Medal at an Olympics, she achieved that goal through determination and dedication despite her background.


Tonight I rode the exercise bike for fifteen minutes but my ankle and heel were in agony so I had to stop. I tried walking a little but found my heel had the most terrible tingling in it which made my foot jump up each time I attempted to put any pressure on it.


Tomorrow I have school again, I have Integrated Studies and double Science, it is also supposed to rain again, there are reports that we are to have 50mm of rain overnight with the rain continuing tomorrow, our dams are now at their highest levels in eight years.


'Believe in yourself and all you want to be, see your challenges and changes as something that will help you reach your dreams'

TERM 4 BEGINS

11th and 12th October 2010

My stomach was churning with butterflies when I awoke on Monday morning, I had mixed feelings about returning to school for Term 4, I was filled with excitement to actually be attending school for the year, yet I was also nervous,as school does pose some difficulties for me.


The weather was overcast and on the walk to school light droplets of rain fell intermittently from the heavy grey clouds. Chapel was first, which I think was an excellent way to begin the Term, we sang a song which always lifts every ones spirits and then we heard about David and his psalms. He was a lonely Shepherd with no one for company apart from his sheep and he was a talented musician. He spent his hours writing his psalms which he put to the music of his harp. We learnt that when David prayed to God he did not only pray to him when he wanted help or when things went wrong, he also prayed to him in wonder and awe and in times when he was filled with happiness. We too can learn that prayer is a very special gift and you don't have to only pray when you want to ask for your life to be made better, praying for joy is a wonderful thing to do.


After Chapel it was time for PE, I was filled with enthusiasm, I always enjoy PE, however the class were doing the twenty metre beep test, which is a running test to see what an individuals endurance is. Even though I could not participate my teacher let me record the class results. While we were on the oval it began to drizzle with rain which made it quite miserable and cool. The class are going to be doing gymnastics this Term, this will be difficult for me to participate in, so I am a little disappointed.


Next it was time for Integrated Studies, our unit of study this Term is Active Citizenship, I think I am going to thoroughly enjoy this topic especially because our assessment is to do an oral presentation on raising awareness about an issue in our society, I have chosen to talk about raising awareness about Brain Tumours, I am hoping that this will help my class mates further understand what it is all about and how they can help me to help others. We also had to write a list of words and what we thought they meant and then we had to write a reflection on what it means to us to be an Australian Citizen.


When I signed out in the front office for the morning the ladies commented on how well I looked, that made me feel really terrific. I was tired from the morning session and my heel had been distressing me throughout the morning but as I have stated regularly I am trying extremely hard not to let it get to me.


I had a rest when I came home and a welcomed warm drink and morning tea, after resting for an hour I then felt like reading a book and that is exactly what I did until it was time to return to school for the afternoon session.


In the afternoon we returned to school for double English, we are reading the novel Born to Run by Cathy Freeman, I would rate this as the best class novel I have ever had to read, I think it is because I have an interest in athletics. We are also going to be writing a script for a part of the book that we would like to turn into a short movie. We are also doing poetry which is something that I relish in. I was quite fatigued by the end of the school day and could hardly wait to return home for another rest, I am feeling very positive about this Term and think I will be able to cope with the work.


I was able to use my FM Transmitter with my teacher, she has used one before so felt comfortable with it, I found it did make a difference and it was like having her right beside me explaining everything, the only time I had some problems was when the class noise level became louder, I then had to adjust the volume much higher than the audiologist and I had originally anticipated.


Whilst watching the Commonwealth Games on television I had the most torturous pain in my right heel that left me feeling sweaty and in tears. It came on suddenly and I was not even doing anything, just sitting there watching the television. Mum massaged it and applied ice, then heat as well as giving me a stronger pain killer, it eventually eased but was still rather painful when I went to bed.


I woke a few times throughout the night with my heel and ankle in pain and also to go to the toilet a couple of times, sometimes my bladder seems to be a little weak and I have to go to the toilet often, I am not sure if this from my chemotherapy.


Today I did not have school, so I could rest in bed a little longer. I read, played Upwords, answered some emails and had a sleep today. Mum and I are reading the Cathy Freeman book together and we are over half way through it, I would like to share part of a prayer that is in the book "Oh God, guide me and protect me, illuminate the lamp in my heart and make me a brilliant star....". I did my physiotherapy exercises and rode the exercise bike but could only tolerate it for five minutes because of my heel.


My Sydney doctors were supposed to contact my paediatrician to let him know what tests they wanted him to do and then he was to contact me to organise an appointment, we heard nothing either yesterday or today so I am not sure what is happening, I find this very frustrating, I guess that is what happens when you have doctors that are Interstate.


We had running training in the afternoon and as we drove we had a shower of rain which came out of nowhere, the smell of the rain was so revitalising and fresh but as quickly as it came, it disappeared. Jarrett ran exceptionally well during training and had no problems with his asthma or vocal chords. He is racing on Saturday night, it is the beginning of the Summer Competition, there is just one problem, it is only supposed to be twelve degrees here on Saturday, that is almost like Winter, so hopefully it won't be too cold for him.


'I believe that if we worry too much then we waste a lot of our precious energy, we need to appreciate and enjoy each moment of every day'