Sunday, March 28, 2010
This week has been pretty busy for me, mainly working on school projects and this week also was twelve months since my life was changed forever. On the bright side some very exciting developments have started to happen with my book.
Monday I spent many hours working on my Life Pathways and Social Futures task about how my school can embrace inclusion, freedom and respect for students with a disability. I feel really passionate and determined about this task and I think it is another way that I can make a difference to other people's lives. I think though I over did it because my eyes became very tired, blurry and fuzzy so I saw two things, double vision is what you call it. On that day I also made some delicious chocolate chip muffins for Nalani, Jarrett and Dad to have on their lunches, did my Mathletics, physiotherapy exercises, played up words and suduko. The mornings are cooler and I am finding that when you don't have much hair your head gets really cold easily and then the rest of your body does also.
After not having the best night sleep because I was woken several times with my right knee been stiff and painful, it was off to school on Tuesday morning. At school I had Science first and we learnt about the sense of sight, then I had English and we had to transfer comic language into written conversation sentences that made sense, then it was time for my favourite subject, Maths, we did some more work on fractions, we did addition, subtraction, multiplication and division of fractions on a worksheet. After taking some photographs for my Life Pathways and Social Futures task, we came home and we received telephone call from Rhiannon to say that my brace for my knee had arrived, so we went there straight away to have it fitted. It is a patella tracking support wrap-around design brace and it holds my kneecap where it should be and gives me support to walk a little more steadily and with more confidence. I played Upwords twice today, it is really great for spelling and helps improve my thinking. I had terrible pain in my scar where the fluid was drained out prior to my surgery, it was so painful that I had to take panadol to help ease the pain. In the afternoon we went to running training but we could not practise for Cross Country because a plastic part on the cross member arm had broken on my wheelchair, we think it could of been cracked from when we went to Sydney for my tests and when my wheelchair was put on the aeroplane, if you don't fold it up properly and force it, it could cause it to break. It had been stiff to fold and had been making clunking noisy and when we folded it up last Sunday it just snapped off it is under warranty so we should be able to get a replacement part but until then we have to be gentle with it. That night I read Juliet the Valentines Fairy to Mum before I went to sleep.
Wednesday 24th March was the anniversary of going to see the paediatrician then being rushed to Canberra Hospital for an MRI and receiving the devastating news that I had a brain tumour and would have to be rushed to Sydney that night. I was so upset today and I cried so hard that I felt so sick in my stomach and then I was dry retching. I remember I was so confused and frightened on this day twelve months ago and I did not know how difficult my journey was going to be. It is so funny how one day you can be at school with all your friends enjoying your life as an eleven year old and then in a matter of hours with one appointment your life is turned upside down. I tried to keep my mind busy by working on my Life Pathways and Social Futures task and it helped. I then thought about if I had not been given this journey how different my life would be now, it would be much better I am sure but then I would not have learnt what I have and experienced as much as I have so I have become a better person because of my journey. Do you think God gives only the best people the most difficult journey's in their lives? I think that he wanted me to travel this journey to become stronger and help other people and when he thinks my job is done he will take me to live with him, that could be a short time or it could be a long time away, he is the only one who knows. I think all my family were remembering what today was. Jarrett told me how much it had affected him and had made him feel so sad and it was really difficult to concentrate at school when we were so far away. Nalani told her friends what the day was and they were all really supportive towards her, she has really nice friends.
Thursday was back to school again, it also marked an important event from my journey and that was the day of my surgery to remove the tumour. Mum said her most prominent memory is of how they were told it would take five hours and I was in surgery for ten hours and then when the doctor came to see them after surgery, she was very upset because she had been unable to remove all of the tumour and how she had apologised and told them that I would not live to grow up, get married and have children, she was also unsure at the time how I would pull through the surgery and what damage could have been done. Here I am still here and even though there is damage, I am alive still. Anyway at school I had Australian Studies and the class were presenting speeches about life as a Convict, I was able to sit and listen although I was at the back of the class so it was quite difficult to hear most of what they were saying. I then had double mathematics and I worked on a problem of dividing three pies evenly between eleven people. If you work out that a circle is 360 degrees and when you divide a circle in four each quarter is 90 degrees after dividing that between eleven people you still have one quarter remaining so you had to divide that quarter by 11 and the answer when rounded off was 8 so I had divide the remaining quarter into portions of 8 degrees each. I then did one where you divided each of the three pies by eleven and you had to divide each pie into eleven pieces each been 33 degrees. It was tricky at first but once I understood what to do, it was simple.
We had running training in the afternoon and we were able to go around the oval three times because the replacement part for the wheelchair had arrived the day before and it now works like a dream. Today I walked with my knee brace on from the lounge chair to the front door which is about 8 metres, I needed Mum for support a couple of times but that was a huge achievement. Afterwards my knee was quite sore and swollen but I had made progress, I could only imagine what I could do if we had a level house to live in.
Friday I was feeling quite exhausted and drained I think it had just been a really huge week for me and a very emotional one. Mum and I went to the Library to borrow some books to work on my other project about an Australian Scientist. I worked more on my Life Pathways and Social Futures task and printed off pages to put it together. I decided to do it as a large booklet with large writing so it stood out and the pictures I took were all A4 size so they really showed what the obstacles are for people with disabilities at our school and it is amazing how many you can find when you are in the situation of having a disability. I also did my Mathletics and scored another 1000 points but I did not earn another bronze certificate because you can only get one a week, how disappointing! I watched the West Tigers play the Eels and was so excited when my team won and Benji Marshall was outstanding, he is my favourite player. My hearing today seemed really bad, I could not hear Mum very clearly when she was talking and usually I can fairly well, I also saw that my right eye is drooping again and my tongue is deviating to the left like it was before surgery and my scar was really painful again which is very annoying.
On Saturday I finished off my Life Pathways and Social Futures task all except taking one more photograph of what it is like in my classroom. I did some knitting and then we went to a Cross Country Race, I was hoping that we could enter it but they did not have a 1km run this time and the course was too bumpy for my wheelchair. Jarrett and Nalani ran in the 2.1km Junior Point Score race and Jarrett won in a time of 6:27:00 and Nalani came 20th in a time of 9:18:00 which was a personal best for her, there were about forty people in the race. Then Jarrett ran in the 4.2km race as a warm down and to pace for his coach who was racing in it. Jarrett came 11th which was unreal considering he was taking it easy. I rode the exercise bike for seven minutes in the afternoon, that is a record and I did some of my stretches but then I was in too much pain. I had a terrible shooting pain in my left hand between my fingers and then it transferred into my right hand and it was soooooooo painful I was in tears and did not know how or where to hold my hands. I had to take panadol and overnight it settled down but it was actually quite scary, not sure what caused it.
Today we went to running training and went for a walk around the AIS, they were setting up for the Lady GaGa concert, it was amazing all the equipment and props she has, they had to close off part of the car park to unload it all. The weather looks like it is going to change so my knee has been stiff and very painful today so walking has not been easy even with the brace. Tonight I am going to Church, it is Palm Sunday, Easter is a sad time but then it is full of hope, it is a little like my journey.
Now all the news on my book: There is a website that has been set up by the wonderful people at Focus Creative, this means that people can purchase my book online when it has been printed the website is www.dainere.com and it also has a link to my Blog so people can continue to follow my story which I hope lots of people will do because there is still so much more to tell. We are having a book launch in late April but the date has not been confirmed yet. I had to write a couple more quotes to go in the book, I also had to do a biography and a final thank you, it is all so amazing, I can hardly wait until everyone can read it. I do hope I can inspire people even though I am only young I feel my journey has made me so much older and wiser. Mum and I did a telephone interview for Canberra FM with Brooklynn and he was so nice, he was asking about my book and we were on the radio every half hour from 6am until 8.30am at the end of the news. They said that I may be the next best selling author, how exciting would that be and it would mean that I could see a dream come true of inspiring and helping others that is what Lance Armstrong has done. I was really nervous doing the interview but it was also fun and because it was about my book it was pretty easy to talk about.
This week is going to be exciting, I have a few appointments, my paediatrician appointment and my bone age x-ray and the most marvellous news is I am going to be a VIP guest at the football game, it is the Raiders verses the Tigers. I will let you know all about it in next weeks exciting entry. Happy Easter may you all be filled with happiness and hope during this special time.
Saturday, March 20, 2010
After our wonderful few days in Sydney it was time to come back to reality and to try and get back into the swing of things.
I woke on the Monday morning after a dreadful night sleep because I had a terrible nightmare, it is one that I have had on and off throughout my journey and it really frightens me because it is about me being behind a door watching my Mum and she is crying and walking away and I keep calling for her but she does not hear me and I can not get to her. Also my knee was really swollen that morning, so it was not the perfect start to the day.
Mum had to make an appointment for me to see Australian hearing as before we left for Sydney we received a report from Audiology stating that we needed to make an appointment so they can assist me at school with my hearing because my hearing in my right ear has had another significant deterioration. I could not believe it because I was told that after chemotherapy finished my hearing should stay the same but with my luck it didn't. Anyway, I am unable to see Australian Hearing until 2nd June which seems like an eternity when you have to try to cope at school and society with a hearing impairment.
School was terrific though because in mathematics we learnt all about multiplying fractions and I found it easy, once again Mum wrote out the information on the board about multiplying fractions and then she wrote the questions out and I did all the working out and answers. I did feel a little fatigued though after finishing. We then had science and we watched information on You Tube about the sense of taste and smell. I had trouble hearing the commentary because there was chatter in the classroom and all the speaking was just all mumble for me.
I was extremely excited because after school we were looking at a house that could be right for us but unfortunately it was not the right house for us with all my rehabilitation equipment there was not enough space (we are not looking for anything huge but just enough space for our needs) and one bedroom only had a very small cupboard with just shelving and no hanging space it was really more like a study.
On Tuesday I had a physiotherapy appointment and was really looking forward to that. Rhiannon loosened my muscles which always helps me to be able to do more for a little while. I rode the exercise bike and did a series of exercises for balance and strength. I have to set some little achievable goals for next time that Rhiannon and I can work on. One I have thought of is to be able to turn without off balancing when I do my little bit of walking around the house, another is to try to do one or two steps, also I would like to be able to walk the last 100m in the School Cross Country which is in early May. Mum mentioned how when my knee was taped it gave me more support, but of course it also caused problems because the tape irritated my skin and I could not keep it on very long, so she asked if a brace may be beneficial. So Rhiannon measured me for one and thought that could assist me, hopefully it will come soon and give me the support to be able to do a little more and achieve some of my goals.
On Wednesday Jarrett went off to school camp and I was really upset about him going and we had to be up early to see him off and when we came home to get ready for school I was sick. I think it was because I was upset and a bit tired because I went to bed and had a long sleep and then I felt a little better apart from having a bit of a headache.
I worked on a senses mind map on the five most common senses, I worked really hard on it and part way through I felt totally drained and got upset and then I fell asleep. When I woke up I finished it off because it had to be in on Friday. Some days it is so frustrating that I just can not cope with everyday life and tasks I am set. I also have two more assessments that are due in by the end of Term, one is on an Australian Scientist and the other I have chosen to do on how school can assist people with a disability to feel freedom, inclusion and respect. I have been doing a lot of work on it today but I have had breaks after each hour so I do not overdo it and become too fatigued.
On Friday I went to school and worked with my group on our Habits of the Mind project which I have already finished all my writing part and I worked on putting the book together and decorating it. I think it will look fantastic when it is finished. Then we watched some of the presentations that people had done for our drug assessment and they were really wonderful, we have lots of really talented people in our class. After finishing that we had some time to either finish off our senses mind map or start work on our other assessment pieces. We went to pick Jarrett up from camp and I was so happy to see him again and we gave each other a really long, tight hug. I really missed him while he was away because he is the one who cheers when up.
What an incredible Autumn morning we awoke to today, it was so gorgeous going for a walk while Nalani and Jarrett did their running training. After running training we came home and all worked on our homework, everyone seems to have lots of homework towards the end of Term.
This week I also played Upwords, it is an marvellous way to practise spelling and it is fun as well, I have worked tirelessly on my exercises even though my knee has swelled and has been a bit painful, I bathed Tinkerbelle and blow dried her, I went to running training and Mum and I practised for Cross Country and did my mathletics work. So as you can see I had a really busy week.
Some days this week I have felt really down and I have cried and felt frustrated but always in the back of my mind I remember that to get to my rainbow I have to go through some storms along the way.
Through the clouds of the week there were rays of sunshine with my book, it is all progressing really quickly, and I have a copy to look through and approve. To see all my thoughts, feelings and my journey written as a book gives me the most indescribable feeling you can imagine. This is my vision, my dream and my hope for helping others. I can hardly wait now until it is completely finished and ready to be sold. I hope that many people will decide to buy it, read it and be touched by it in a way that makes them realise how wonderful and precious life is.
Friday, March 12, 2010
It has been so wonderful to spend some special time together as a family in Sydney not for medical treatment or tests but as a family and for a very exciting event. My brother Jarrett is running in the Australian Youth Championships in the 3000m and 1500m.
We arrived here on Wednesday so that we could have some precious time together before Jarrett had to focus on his running. We drove and had a very leisurely trip because travelling in the car takes a lot out of me and having my leg in one position really effects my knee.
We have a picturesque view from our 14th floor room of Sydney and the Harbour Bridge and it is even more beautiful at night. There are many paths to walk around here and the best part is that it is all extremely wheel chair friendly, which is a welcome change from my last week in Sydney with all the uneven footpaths and bumps everywhere. I have been having a ball wearing my special gloves and wheeling myself around, my arm muscles are definitely benefiting from being here.
Yesterday we took a stroll to DFO and loved looking around the shops which had many bargains and I was delighted to find some really pretty skirts which I bought for myself. I really love beautiful clothes that make you look and feel special like a princess.
There are no major shopping centres here at the park, you have to drive to get any groceries because otherwise there is only a convenience store and they ran out of milk because of the influx of athletes.
Everything is so very lush and green here and is kept very clean and tidy. We saw a grass hill that is shaped like a pyramid and many water fountains that are so relaxing and gorgeous to look at. We also went to the Sports Centre Hall of Fame and saw pictures and read about athletes and their achievements from the 1800's until present. Jarrett was inspired by the long distance runners and their stories especially because they did not have the same technology in gear and shoes and still ran terrific times.
I can't seem to escape the hospital or tests though, we had a telephone call from the Endocrine Team who want me to have a bone scan to find out what the age of my bones are because of some results from Sydney. I do have osteopaenia so my bones could be at an age that is older than what I am. I have to have the test when I return home from our little trip.
Everything is also flying ahead with my book, I am still so amazed by the extraordinary people who have stepped forward to assist with this huge project. To be able to share my journey with the wider community, raise awareness of childhood brain tumours and inspire maybe just a few people is a once in a lifetime opportunity for me and as I do not know what lies ahead in my life I wanted to share it sooner rather than later.
We are now waiting to go to the track for Jarrett's 3000m it would be so wonderful for him to come in the top five and achieve a personal best and he still always tells me that every race he dedicates to me. I think Jarrett is courageous, dedicated and the most amazing runner I have ever seen. He loves the Addidas motto of Nothing is impossible and I believe that this can apply to many situations in life.
Wow! It was so amazing at the track watching Jarrett and the other athletes from around Australia run and it was also very special to think that Jarrett was running on the same track that the 2000 Olympics were held and some of our famous athletes run there also. With a slight breeze blowing and an air of tension in the air it was time for Jarrett to run. In his age group there is such a big difference in the sizes of all the boys some are very muscular and tall and others are so much smaller and even look younger. The gun went off and as the smoke lifted into the air they were off. Some of the boys went out very hard and fast but Jarrett had a plan that he and his coach had worked out and he was running his own race, he sat in the pack and waited. The 3000m is seven and a half laps around the track, I wonder if any of them ever get dizzy going around so many times in a circle. Jarrett kept running well and I knew he was not going to be in the top three and get a medal but I knew that he was going to get a personal best. In the last lap he took off like a speeding bullet and while other boys did not have the energy he overtook them and he came 7th in a time of 9:16:87 which is an 8 second Personal Best for him. He is the 7th fastest at that distance in Australia, how cool is that?
We had dinner at an Italian restaurant that night and Jarrett was on a high and still excited from his run. The restaurant was quite noisy and I could not hear in my right ear, it was all muffled and I just couldn't hear, it was actually a little scary for me. When we come home Mum has to get in touch with Hearing Australia because on the day we left we received a letter from the auditory people from Sydney and my right ear hearing has had another significant loss at the high and normal range. Hopefully I can get some assistance to help me hear a bit better.
Today was a beautiful clear, sunny morning and we took Jarrett to physiotherapy to loosen him up ready for his race today. The physiotherapy rooms had a balcony that had views out over Sydney Harbour and it was like looking at a postcard. After physiotherapy we relaxed and packed ready for leaving to go home tomorrow and then it was time to go to the track. It began to cloud over and the wind picked up. The 1500m had twenty four competitors in it and on a crowded start line Jarrett was in the centre. The gun went off and they ran, so many were jostling and pushing and Jarrett sat back keeping himself safe from all that silliness. After the second lap with the runners all running so close a boy fell, some of the runners jumped over him, Jarrett ran around him and asked him if he was okay and he said he was and got up and continued running. The favourite in the race was in the middle of all the jostling and he ended up having his shoe pulled off and had to run the rest of the race with only one shoe, unfortunately his foot was hurting and he did not do very well. As the race progressed Jarrett sat tight on the pack and then in the last 400m he took off and he ran like he had wings on his heels. He finished 12th and once again ran a personal best, his time was 4:19:18. I am so proud of him and I love to watch him run, he loves it so much and knows that as he gets older he can achieve so much. He never goes out there to win, but to challenge himself to do his personal best, his race is against himself.
After he had finished his warm down, we went to the pool and I sat on the edge and let the water lap over my legs, it was actually pretty cool but it felt great. I was also able to do a little walking again today around the motel room, in fact a little more than yesterday but then my knee was painful and swelled, today it swelled underneath my kneecap as well and across the top and it was quite big but at least I did try some walking. For the rest of the day it was too painful to even stand on, so I think I overdid it just a little.
What an wonderful and amazing time we have had this week, it is sad that is has to come to an end. I am looking forward to going home though to see Tinkerbelle and then go to physiotherapy and Hearing Australia.
It is now raining, hopefully it won't be raining when we have to travel as that is not very nice. Every day is now like turning the page of a book with a new and exciting story to read.
Saturday, March 6, 2010
The rain poured down in Sydney last night but this morning it had cleared but remained overcast. I hate it when you are waiting to leave and the time seems to go backwards instead of forwards, that is what it seemed like this morning for me. Finally it was time to say goodbye to Ronald McDonald House after only a short visit this time thank goodness because I was really scared that I would have to stay longer.
The Airport was extremely busy today and as I watched the hustle and bustle around me I reflected on my week. I had found out what is going on with my knee and even though it will take a while to recover it is not too sinister. I had good news that there are no new tumours in my brain and then I had the really worrying news that my lumbar area has shown increased enhancement and something is there but exactly what is not known as yet and now my next visit, I think I will be very anxious and once again the doctors have said that this is something new and unusual, that seems to be the story of this journey but I guess that is what makes me such a unique individual. Then the remaining tumour has increased slightly but is stable so that I will take as a positive. My hearing worsening in my right ear is not good but I now know there is a device that can assist me and to have the left ear remain the same I guess is another positive. I do not know the results of my neuropsychological test but that will be interesting as when I told Mum what some of the answers I gave were she told me that it was a great try but not quite right.
Being home with my family again makes me feel so wonderful and loved and with their support and the courage that I have learnt to have I know no matter what hurdle is thrown in front of me, I can leap it and surge ahead.
From today I move on again to another stage and await my next visit to Sydney, I guess always in the back of my mind will be the thought whether the tumour remaining will become aggressive or a new one will appear and then there is the whatever is going on in my lumbar area. I will hold my head high, keep smiling and be grateful for each new beautiful day I am here. When times may seem impossible I will keep striving and I know that life's pieces will have a way of falling into place when I least expect it.
Nalani wrote another poem which is written in a form called a Sestina, it is written from my point of view.
THE UNWANTED JOURNEY
Tears trickle down my cheeks in the silent night
In my heart I know that this is God's plan for me
Yet I was not prepared to travel this journey
I do not know whether I am going to live
People are always telling me that I am brave
All I can do is hold onto a wisp of hope
People reverently pray from their hearts with hope
Many are travelling with me on this journey
So I know in my beating heart it is not just me
I am sleep deprived every single dark night
Each day I become even more determined to live
To fight this terrifying battle I must be brave
When times get tough, how can I be brave?
Especially when doctors hurt and annoy me
In the gloomy hospital it always seems like night
During times like this all I need is a little ray of hope
There is much pain and anguish on this journey
Each day, every moment I believe that I can live
I have learnt that there is a different way to live
Also how to pursue my dreams through hope
Like a lion I try to have the strength to be brave
The path I would have chosen is not this journey
I make a wish upon the first bright star at night
Then ask God above "Why did this happen to me?"
I look in the mirror and I see a totally different me
My light is brightly rekindled whenever I am brave
I am enfolded by love and this brings me hope
Resilience gives me the power to continue to live
The treatment leaves my body black and blue like the night
I have a courageous spirit to make it on this journey
Toxic drugs killing cells are part of this long journey
Doctors tell me there is no known cure for me
I want more than anything to be a rare survivor and live
Through the troublesome storm there is a rainbow of hope
Mum was there holding my hand and keeping me brave
The nurses poke and prod me all throughout the night
This is all part of my never ending journey
In my heart I will never give up hope
Cancer is the demon that is debilitating me
Now for the most exciting and extraordinary news it is like a fairytale ending where dreams come true, my book is on its way thanks to some of the most generous, dedicated and caring people you could ever know. 'Sometimes our light goes out but is blown into flame by the breath of human kindness and we owe the deepest thanks to those who have rekindled this light' I wish to express my deepest and heartfelt gratitude to everyone involved in making my wish a reality. I am keeping the title and other details a secret at present but I will let you know when my book is going to be on the shelves so watch out for it and I hope that it will not only inspire those who read it but also raise a new awareness about Brain Tumours and help raise funds for others who have to face the same devastating journey I have.
Friday, March 5, 2010
Today I woke up early to get to the Neurophyschology test at 8.30am. When we got there they asked some questions about my medical history and how I am going now and at school, Mum then had to leave and fill in some forms for them and so I could start the testing but trusty old Theodore was there with me. My first test was a drawing one where I had to draw a picture from one that I was shown, then I did another test and they went back to the drawing one and made me draw what I could remember of it. Next I had to listen to a row of words and I had to remember them and say as many as I could remember, this task was pretty difficult for me. I also had to do some mathematics which I think I did okay with. Another test was with blocks where there was a plain white and plain red and then half and half and they showed me a picture and I had to make it just like that. I then read words out loud to them and then I had a spelling test which was quite tricky. I then was given a break to have a drink and rest for half an hour. Then it was back to the serious testing. In this next lot of testing I had to follow steps to complete a task. I also did a test where I was read a story and then I had to retell it the best I could. Up next was I had to look at four boxes and they were all different and there was a question mark on the last one and there were four options underneath and I had to choose which one fitted. The next one was an activity where I had to read a passage and choose a word that fitted best in the gaps. I had to try to retell the story I was told again, this was a test of my memory. To finish off my testing we played a game and it was where the tester came up with a topic and I had to think of as many 's' words as I could but it could not be a name or State. I was so exhausted after the testing and just wanted to go back to Ronald McDonald House and have a rest, but I had a physiotherapy appointment straight afterwards.
At physiotherapy I got to lie down which was great after all my testing and they used the ultrasound machine around my knee and focused on the area I have pain in most often. Then it was taped at the sides and across the kneecap to pull it over. I then had to do some squats making sure that my knees were not heading inwards and that my feet were facing forwards. This was very tiring today because I was already fatigued from my earlier testing. So the physiotherapist decided to end the session, telling us that she would be in contact with my physiotherapist Rhiannon back home to let her know how they treated me while I was here.
We then returned back to Ronald McDonald House where I flopped down, exhausted on the bed and it felt so fantastic. I had a little rest and then Tess arrived, this was exciting because she told me all about my book. I choose what to have on the cover and came up with ideas for the back of the book. I am able to have colour photographs in it also. My book is only about the beginning of my journey, I still have so much more to share and I will hopefully be able to do this in the future. Tess and I are so excited that my book is actually going to be a reality and I think that so many people will want to read my story and will be touched by it and maybe I can make a difference. So many kind and generous people are involved and it shows that in our world some people do really care.
I am now counting the hours until we return home, I have heard that Tinkerbelle has been a little mischievous while I have been away so it sounds like I need to sort her out with lots of cuddles. I am hoping that we have a safe trip home as they are predicting thunderstorms and I don't think flying in a storm would be a smooth ride!
My time here has been so busy, there have been some positives as well as some worries but that is part of what I expect these days. Tomorrow is again a new day and I will embrace it the best way I know how and that is with a smile and a positive attitude.
Thursday, March 4, 2010
Today it was a later start than any other day. My first appointment was with occupational therapy, I had to do a writing speed test with the sentence 'The quick brown fox jumps over the lazy dog', I had to write it as quickly and as neatly as I could in three minutes. She talked to us about some more things to help me at school, like having special things that are called 'skis' put on the bottom of the legs of the chair so I can sit at a desk like everyone else rather than in my wheelchair. She is going to contact Therapy ACT to have them come to school to have a look at how they can help me or if I need anything. She also said that going to school for a five day fortnight would be beneficial, that would mean going three days one week (Monday, Wednesday and Friday) and two days the next week (Tuesday and Thursday) that also gives me more variety of subjects.
Our next appointment was with my lovely social worker Catherine, she asked me lots of questions about what I have been doing back at home, she was excited to hear my news. She told me that CanTeen and Camp Quality are joining to form one big support group for kids of all ages. She wants me to keep in touch with her by email. She thinks my book is going to be fantastic and has already requested to have a signed copy of it. Before my next appointment we went back to our room at Ronald McDonald house and I did some knitting.
It was then time to head off for my last appointment of the day. My neurosurgeon was unable to see me but her registrar and the head neurosurgeon saw me instead. They asked me some questions and tested my reflexes, then they went over my brain and spine MRI. They confirmed that I am stable with only slight growth of the remaining tumour and no obvious signs of new growths where my tumour was taken out. However they are concerned over increased enhancement in my lumbar area, thinking it could be what they call seeding which is very early stages of cancer. They said that if the next MRI shows further enhancement then they will have to investigate it further and see where to go from there. This is why I am monitored so closely to catch any nasty things in my body. I learnt something interesting today from them and that is that an MRI shows something more quickly than a lumbar puncture which often shows what they called false negatives.
Tomorrow I have my long and exhausting neuro-psychological test, this test shows where my learning is at. Mum can't help me at all but Theodore can just like he has the whole way through this! Then in the afternoon Tess is coming to see me about my wish.
My sister has been doing a poetry unit at school and she wrote this special poem about me it is written in a special way because it is a type of poem called a Villanelle. Some people cried in her class when it was read and I would like to share it with you.
WHY HAS THIS HAPPENED TO YOU?
You are an amazing person,it's true
I admire you in every way
Why has this happened to you?
I can't believe what you have been through
For almost a year you were away
You are an amazing person, it's true
Some days you feel down and blue
Just hope for a better tomorrow today
Why has this happened to you?
I love you, you love me too
Like a rainbow you brighten up my day
You are an amazing person, it's true
I am here to comfort you
If you ever don't feel okay
Why has this happened to you?
You are not alone, everyone's here for you
You are an inspiration to many people today
You are an amazing person, it's true
Why has this happened to you?
Wednesday, March 3, 2010
Today was a glorious Autumn day in Sydney and my day started with my hearing test. First my middle ear was checked with a special machine and that was fine in both ears. Then in the next test my left ear passed but my right ear failed, then it was time to put on the headphones and have the hearing test. My left ear has stayed the same with mild hearing loss in my high frequency range, my right ear however has become worse. Audiology want me to have an appointment with hearing Australia to organise an amplifier system for me to use at school. Also to get ear plugs to use when I go somewhere really noisy to block out outside noise. I am glad something can be done for my hearing.
After the hearing test I then had physiotherapy, I had a student and she did a full assessment on my knee. She found out that my hamstrings, calves and ITB's are extremely tight but I already knew that. Then I rode the exercise bike for three minutes and did squats. She then taped my knee but did not use the white sensitive tape, because yesterday it peeled off. Within an hour the tape irritated my skin, it was red and itchy so I had to take it off. Also my knee was very sore and swollen after it.
My Nana and Pop called today and my Pop came up with a great idea about raising money and that was to sell bears, because I love bears and Pop thought that a Rainbow Bear would be a great idea to represent Brain Tumours because of my saying 'you have to go through a storm to get to a rainbow'. That might just be my next art project because you can get calico bears and I could paint them or I might be able to knit a rainbow bear because Mum is teaching me to knit or perhaps I could paint pictures of rainbow bears.
We received a first draft copy of what my book could look like today, I have to think about the title, photographs and how I would like it to look. It is all very exciting and I think my book will be awesome because when I was looking at it, it seems like a book you would pick up and want to read.
Tomorrow I have an Occupational Therapy Review, a visit to our Social Worker Catherine and then see the Neurosurgeon.
Tuesday, March 2, 2010
"Life is the art of drawing without an eraser." You can't change what is happening in your life, even though you would like to. Today I felt like that.
On a cloudy Sydney morning we had an earlier start than yesterday, we had to be at the hospital for bloods before 8am. Which actually turned out quite good because there were not many early birds today so I was taken in quickly. One of my blood samples for the Endocrine team had to be put on ice to keep it stable. This was something new and interesting.
After bloods it was then time to check into C2 North for my Clinic appointment. It was back to the old routine of height and weight which I have lost a little more weight but then again I had to fast for my lumbar puncture later in the afternoon.
I was taken to my hospital bed on the ward where I would be for my lumbar puncture and then the registrar saw me. My oncologist is in Singapore at the moment at a Brain Tumour Conference and my case was going to be talked about by all the Brain Tumour experts over the world. My blood test results all came back as normal for someone who had finished chemotherapy but they are not that of any average twelve year old. I was told that the dietitian would be coming to talk to us about my weight loss. But first I had two appointments to attend one with physiotherapy and the other with Endocrine.
At my physiotherapy review the physiotherapist agreed that my knee recovery will be long and slow and noted that my right knee does not glide correctly. She taped my knee and then we did an exercise to strengthen the inside muscle of my knee, I then did some cycling which she thinks will be beneficial but I must stay within pain limits and swelling limits or it could do more damage. She they did some ultrasound on it and that always feels great and then she retaped it again and put the tubular bandage over it. She wants me to have another session tomorrow to check to see if the taping had irritated my skin and to have some more ultrasound.
Then it was time to rush off to my Endocrine appointment where I was measured, weighed, had my arm span measured, my sitting height and my head circumference. They then discussed various aspects of my growth with me. They told me that because of the high doses of radiation that I received and so close to my pituitary will affect my hormones so it is most likely I will need hormone therapy as I grow older and they are thinking that they may have to start with estrogen patches at the end of this year. It all sounds a bit terrifying and strange but the team seem very nice so I know they will do what is best for me. I have to go back to see them in three months so they can also check for any changes.
It was then time to go back to the ward ready for my lumbar puncture. While I was waiting the dietitian came to see us and she wants me to put more fat into my diet and try to build up my weight a little as I am underweight. It was then time to head off for my lumbar puncture, Mum came in with me while they put me to sleep and Theodore was there with me also as he has been the whole way through. Because I don't have the central line anymore they gave me laughing gas and then the smelly gas to put me to sleep. When I was taken back to the ward, Mum was there waiting and the nurses told her that I woke up and gave them a huge smile. I had to wait for an hour and have my observations done which my temperature was great and my blood pressure was its usual low. I was then allowed to go back home to Ronald McDonald House, I was really happy because I do not have too much pain in my back this time, the last one I had was quite painful.
When I was waiting for my lumbar puncture the play therapist came to the room and she gave me some sewing to do. It is a Hopes, Dreams and Wishes pillow you stitch two rectangles of material together and then you fill it with stuffing and throw in some star sparkles which are for luck and then you stitch up the final seam and then you decorate the front. I have some flowers and a butterfly to do that and also some beaded fringing to sew around the edge.
Some very exciting news from today is that Tess called and she is going to visit us on Friday afternoon to talk about my wish, it now seems that my book is going to go ahead and it will hopefully be published soon. This is so wonderful because I think my story can make a difference, inspire others and help people know more about what children with cancer go through.
There are some preliminary results from my MRI on my brain and spine and that is that the remaining tumour or what they call the residual disease in the floor of the third ventricle has grown but is stable, they have also found an increased enhancement in the erector spinae muscles bilaterally, my 4th ventricle is enlarged and slightly deformed and there is a small amount of blood products around the margin of the 4th ventricle particularly on the right side superiorly and there is evidence of cerebral and cerebellar atrophy which is noted by enlargement of the ventricles and surface CSF spaces and widening of the interfolial spaces within the posterior fossa. They said we will have to wait for the final result and results from the lumbar puncture in regards to the enhancement in the spine. Whatever happens though I will keep searching for my rainbow knowing that it must be coming soon.
Tomorrow is my hearing test and physiotherapy so I will let you know how that goes.
Monday, March 1, 2010
We arrived in Sydney yesterday at lunchtime and settled in at Ronald McDonald House, it seemed so different because all the people that were there when we were there for all my treatment have also gone home and there are all new faces. Our room is small but it is a place to sleep.
Today was cool and wet and we started early with my MRI on my right knee. I went in and they thought I wouldn't need any contrast, but half way through they came in and told me that they would have to insert a canula and put in contrast to have a closer look. Having an MRI on my knee was very different because it was much shorter and the sounds were not the same, I did not know the results straight away, I would find out later today.
My next appointment was with the neurologist she checked my eyes, my reflexes, my coordination and was checking how I am going. She found that I have not had any improvement in my condition since December when she last saw me, so that is probably what I will remain like. My coordination on my left side has become stronger and my right side is worse and more noticeable now. My balance will not improve more than it has at this stage and my eye flickering and drooping will also remain as they are. It was also found that I have nerve damage in my hands and feet and this is was caused from the Vincristine and it will be permanent. They were hoping for an improvement but unfortunately because of the severity of my tumour and the treatment that is the best I can hope for. She also told me that where my hair is not growing back, that it is now not likely to grow at all but did say that these areas can be covered by my other hair as it grows longer. This was not news that I wanted to hear. She talked about school and felt that perhaps I should only go twice a week instead of the three times as it seems to be taking too much energy from me.
It was then time for me to visit the Orthopaedic Specialist, he was extremely nice and so was his registrar who assisted him. He did quite a few tests on my knee and checked the results of my MRI. He told me that my knee cap was sitting out of place, instead of being in the centre it is sitting to the outside, so everything connected is also pulling to the outside and this is what is causing my pain and swelling. He also said that because of the chemotherapy my muscles and bones have been weakened. He said to bandage or tape my knee as much as possible and to have physiotherapy to strengthen my wasted muscle on the inside of my knee so it will get stronger and start to pull my knee cap back to the centre. He finished by telling me that this will all be a long, slow process and that he want to see me in three months.
My last appointment for the day was my one hour long MRI of my brain and spine, as always I had to have contrast with this test. My day had been so tiring I fell asleep while I was having it. I will not know the results from this until sometime next week.
The lift at Ronald McDonald house was getting finished so Mum had to carry me up the stairs to our room. Tomorrow I have a early start because I have to have a blood test before eight in the morning.