Monday, May 31, 2010
On a wet Sunday with huge puddles that flooded the stones in our backyard, I tried to keep cosy and warm inside. The rain continued to tumble relentlessly from the dark clouds that filled the sky, I played playstation with Jarrett, then found myself dozing off to sleep. I woke feeling refreshed so I decided to tackle the rest of my maths test, it was difficult and it tired me out but I finished it and I am so proud. I watched MasterChef and was shocked when Matt Preston threw Aaron's pasta on the ground - but after the commercial break he said he threw it because it was magnificent and he didn't want anyone else to eat it. I woke up sore, had pain most of the day and went to bed with discomfort.
Today was supposed to be ACT Schools Cross Country however it was postponed because of the horrific weather, I was so disappointed because I was looking forward to seeing Jarrett run. One word to describe the weather today is glacial. My bones ached constantly and when I tried to take a small step I collapsed, my legs just did not want to hold my body up today. Mum and I had to pay some bills today so we waited until the weather improved but I was so rugged up and I felt like an Eskimo trying to survive in the Arctic. We hurried home to the warmth of the ducted gas heating to defrost our cold bodies. I worked on a special picture to give to Kevin, the Manager of Borders at the Canberra Centre to thank him for letting me be in-store selling and signing my books. I think it is important to thank people who help me along my journey and give them something to treasure in the future to remember me. I was having a delightful, warm shower when I suddenly and unexpectedly had a sharp, agonising pain in my right hand it reduced me to tears and I screamed. Mum massaged it, applied heat and ended up bandaging it to try to give me some form of relief. It is still extremely painful while I am typing this but I have a left hand that works so I am using it, not as expertly as my right but it does.
I had a sensational email from Denis from International Brain Tumour Alliance, he is going to Vienna for a conference and they have a display there, he is taking my book and some flyer's with him, he is also meeting with support groups on his journey there. This is massive, my book could now really reach people overseas, spreading the need for further research and inspiring other people world wide. This is like a rainbow that stretches the longest possible distance and will give light and hope to so many children in the future. Gavin and Ben are organising the flyer's and paypal to receive international payments, we may get a mammoth rush of orders for my book.
Tomorrow I have school and will hand in my Maths test, hoping that I did well on it. Wednesday is a day that I truly look forward to it is the day of my appointment with Hearing Australia and hopefully they will be able to give me aids so that I will be able to hear.
'We can wash all the worries away with hot soapy water then dry them with an optimistic tea towel'
Saturday, May 29, 2010
I was determined to go to school on Thursday even though I was still in distressing pain, I don't want to let it destroy my life so I fight through it even though it tires me dreadfully. When I arrived at school it was Australian Studies and we were learning about Yagan the famous aboriginal resistance fighter, the leader of the Noongar people, it was extremely interesting because in the end the white settlers ended up killing him and chopping off his head, it was smoked and pickled and sent to England, his skin was also taken off his back because this is where his Tribal tattoos were. His body was supposedly buried but has never been found. He was respected by both his own people and many Europeans for being so determined in the way he defended his people. Mum took notes for me because there was no way that I could keep up, I am too slow to do note taking during presentations. I received my assignment back that I did on Governor Phillip and I achieved an excelling and I was very excited about that and the comment that the teacher gave me was that I showed an excellent understanding and good personal reflections on the questions.
After Australian Studies I had mathematics and we had a maths test. I found it extremely difficult to concentrate and focus on it. I ended up with a headache that went thump, thump, thump in my temples and then all the work in front of me went all blurry and I could see two of everything which is called double vision. The maths test went for a double period and it seemed to go so slowly, I got two pages of it completed and felt more fatigued than I have doing any other activity. On the way home in my wheelchair I broke down and cried, it had all just been too much. This is one of those times when I truly wish I was the same person I used to be, the one who would have coped easily with a maths test and would have flown through it. My head was still throbbing and thumping almost like bomb that was going to go off any second. So I lay down after having a lovely, warm cup of tea and I feel fast asleep, I did not wake for another hour and when I did I felt a little better but the headache was still there in the distance.
In the afternoon even though I was still not feeling too well I was excited to have an interview with Natalie from Canberra Weekly. She was really terrific, she asked me numerous questions about my book, my book launch and my Brain Tumour. Her photographer then took some photographs of me holding my book like I was reading it, to make the light more effective he used a piece of aluminium foil inside the book and then it reflected the light onto my face and made it look fantastic, I thought that was very clever of him. The story will be in the Canberra Weekly the week of 7th June, so keep an eye out for it. I am finding that the more I talk about my book and my story it really makes me more determined to have my book reach as many people as possible so that more research can be done to help children with brain tumours because even if I can't be helped I would love to be known for helping others through my own battle.
That evening it was the Woden Harriers AGM and presentation night, when we arrived I found that I had dreadful pains in my chest and I became quite worried about them, they were like a stitch in between my ribs. Mum rubbed it and that eased the pain a little but it was still there bothering me throughout the meeting. My night was brightened though when Jarrett took out three awards: one for Cross Country U16Male Runner of the Year, one for Track Competitor Male U16 of the Year and the last one for the Most Promising Athlete of the Season. Then we were all surprised and excited when Nalani took out two awards: one for Cross Country Runner Female U18 and Track Competitor U18 Female. What a lovely achievement for her and it really boosted her especially with her injury at the moment. I know that she is going to come back better and stronger than before. The evening ended with smiles all around and I was so thrilled that Nalani and Jarrett had won special awards, my chest was still painful when I retired to my lovely, warm bed but was hoping it would ease because the next day we were moving house.
Friday arrived and I woke with only a little pain all down my right side but that was not going to ruin the day that we moved. The removalists arrived at 9am and started quickly and efficiently moving all our boxes and furniture into the removal van, I did hear a few huffs and puffs though as they carried some of the items down all those stairs. As our house became bare I thought about all the memories that I had from that home, especially the ones of being ill and one night sleeping in my bed and the next been flown to Sydney for emergency surgery. I hope in our new house we can have many happy memories that make us smile and strong in the future what ever it may bring whether it may be good or bad. By 11am all our furniture was packed and it was time to head to our new home. Our new home is not quite as roomy as our old one but it has a cosy feeling and of course there are no stairs. It was actually quite overwhelming finally being there and I felt very teary as we began the task of unpacking and setting up our new home. My bedroom is close to Mum and Dad's which is wonderful because I wake regularly during the night and Mum comes to look after me. The first thing I put up in my new bedroom was my Benji Marshall photograph frame that Mark the exceptional camera man made for me, the photograph is above my head, so I know that Benji is watching over me always, then my bears all had to find their special places in my room, my clothes went into my wardrobe and just fitted and I filled my shelves with all my significant treasures. We spent the rest of the day and into the evening setting up the rest of the house, Mum and Dad finished it all off by 11.30pm last night, we were officially completely moved in.
During the night I heard rain tumbling down outside the window and in morning it was still pouring down, there were huge puddles rippling as the wind blew across them and the sky was grey and dismal. With the rain, came the pain, my right side again caused me misery but again I will be courageous try to fight it. Today was the day of my in-store book signing at Borders in the Canberra Centre and I wanted to be able to meet people with a smile. Jarrett had a Junior Point Score Cross Country Race at Campbell Park so we drove there, dropped him off to warm up and went to Borders. The Manager Kevin was awesome, he explained what would be happening and said they were so excited to have me there. I was a little nervous but really enthusiastic about it all. I had developed another headache similar to the one that caused me grief at school on Thursday. It was in my right temple, it was thumping and making me feel ill and it made me have double vision again which is not what I needed when I had to sign books. You know me though, I am resilient and I won't let these inflictions stop me from what I want to do and feel I need to do. At 12.30pm I sat at the front of the store at a lovely round table covered with a white cloth with gold stars on it and behind me was a shelf with my picture from the Canberra Times on the day of my launch and then some words about my book and then all my books, that made me feel very special indeed. I had many people come and speak to me and have their books signed, some people already had my book and they just wanted to meet me, I felt so honoured that these people came to either buy my book or see me. I met Susan from Brain Tumour Alliance Australia and she is an extraordinary person, I think all people whose lives have been touched by a Brain Tumour are. She would like me to speak at one of their meetings and this is something that I would love to do because brain tumours are now the greatest cause of childhood cancer mortality in the age group 0 to 14 years. Causes of brain tumours are unknown and they can not be screened for or detected early. If I can raise awareness about childhood Brain Tumours then perhaps more can be done to combat them in the future and this means that lives could be saved, it is a monumental task but one little voice could be the start of greater attention to Brain Tumours. Anyway back to the in-store signing, it was another remarkable day in my journey and one that I will remember for meeting the people who are reading my book and how it is making a difference to their lives. Kevin told me that I was the number one selling author in the Store for the day, outselling authors like Jodi Picoult. What a huge achievement I am so overwhelmed yet proud that as a twelve year old, my story about my journey with a cancerous Brain Tumour is selling so well and touching a diversity of people. They kept the books that were left after the signing and feel that they will be sold out very quickly and have said they would love to have me in store again. I was given the most exquisite bunch of flowers as a thank you, which they did not need to do, it was them that I thank for letting me be there to promote my book and Brain Tumour awareness.
While I was signing books Jarrett had his race and because he has ACT Schools Cross Country on Monday, his Coach told him to run it easy, well easy for Jarrett was coming first! He said the course was sloppy and slippery, his clothes had mud splattered all over the back of them, poor Mum having to wash them. He is my hero because he runs so well and years ago he was told he would not be very good at sport because he has oral, verbal and motor dyspraxia, well he has proved them wrong.
I still had my headache into the late afternoon and tried to relieve it with panadol and by lying down but lying down made me dizzy and nauseous so I sat quietly and rested my eyes. By dinner time my headache had disappeared and I was so relieved because I could then eat a little dinner, we were going to have lasagna but we turned on the oven and it started to blow out lots of smoke, Dad says the fan has burnt out, that would probably only happen to us, we seem to have so many dreadful things happen but we just shrug our shoulders and move on, so we had spaghetti bolognaise instead. Tomorrow we have to do some final cleaning and gardening at our old house.
'The most valuable things in life are not measured by how much money we have or what we own but by friendships, trust, faith and love'
Wednesday, May 26, 2010
We have experienced two of the bleakest, most miserable days over the past couple of days and my pain has matched the weather and I just wish it would ease up and I would feel sunshine and warmth in my days.
Yesterday I woke feeling shocking, I had severe stomach pains, a headache and nausea I could not even stomach my morning cup of tea, even though I did not vomit I was dry retching. I was unable to go to school and it took until lunch time for me to feel any better and it was then that a lovely, delicious warm cup of lipton tea went down well.
Nalani had physiotherapy in the afternoon and we found out that she has damaged her fat pad that sits under the knee cap. She had to have it taped and still has to remain on crutches for a few more days but is able to put some weight through it. She won't be able to run at the ACT Schools Cross Country on Monday which she is terribly disappointed about but she should be able to run at the ACT Club Championships in July. She can start doing some sport in a couple of weeks but it will take six weeks to achieve a full recovery. She is determined that this is not going to stop her, she wants to come back from this injury stronger and faster. I think that she will be able to do this because she is a positive person.
We had two telephone calls yesterday about my book, one was from the Manager of Borders and he is extremely excited about me being in-store on Saturday because Canberra does not get many 'famous' authors to come in store. He is hoping that many people will show up to make the day a huge success. If I can sell out of all my books then that is a huge donation to the Sydney Children's Hospital Brain Tumour Fund, they are also going to have collection tins for people who may not want to buy my book but would like to make a donation. My hope is that hundreds of people will show up and then together we will be the ones who are helping others and making that difference to their lives.
The next telephone call was from Canberra Weekly Magazine which you see in front of your local store or shopping centre. They are doing a feature story on me because they think that I am an inspiring person and they would like to help me sell more copies of my book and to raise awareness about my story and brain tumours. They are coming to take photographs and do an interview on Thursday afternoon and then the story will be published on 31st May.
In the evening I started on three paintings that I am doing, painting is relaxing and helps you forget your troubles. I was still so sore and did not feel anywhere near 100 per cent but when you sit around and dwell on things it does not make it any better so it is much better to do something productive.
Rain, Rain, Rain it poured down overnight and into the day today, then the cold winds came in a flurry and made the day so icy it felt like we were in the Alps. I was so sore overnight and had to have pain killers during the night. I feel tired today because I did not sleep well and then my eyes flicker.
I had my physiotherapy appointment though this morning and I knew that Rhiannon would be able to give me some relief. I told her how my knee, ankle, buttocks, hip and spine were all painful and she went to work loosening all the tight, stiff muscles to provide that hint of relief. I had a lovely heat pack on my back after she finished with it and then ultrasound on my knee which was extremely sore today. I did some sit to stands a little wobbly but not too bad and then a little walking and trying to turn in two steps. I had a couple of anxious moments when I toppled and found it difficult to coordinate the turn but I made a good effort. I was really exhausted as I sat down, I felt like I had just competed in the Cross Country and my heart was racing. I am so unfit! We also gave Rhiannon the paper work to look that she can fill in to help me receive my classification as a disable athlete. When I return from Sydney I have another appointment with her. I am so lucky to have such a terrific physiotherapist she has helped me so much on this journey and I know that into the future she will be there to continue helping me become stronger and able to achieve more.
We collected the keys for our new home at lunch time and had a quick look, it is different to where we are now, it is a home, it is single level, it is not as big but I think we will be very happy there.
I have a very sore, scratchy throat today so I have been sucking strepsils and having plenty of fluids, this time of year is when many illnesses appear because of the weather and we spend more time locked up with windows shut.
Only two more days until we move into our lovely home I am still hoping that it will not be raining on moving day, that will make it a little slower, the removalists are coming between 8am and 9am to start the uplift, so it should all be moved into our new place by lunch time on Friday.
As a glint of sun creeps through the grey clouds outside I smile, maybe tomorrow the sun will warm all of us and remind us of the wonderful things we have in life.
Monday, May 24, 2010
It was a crisp start to the day on Sunday but the sky was clear and we headed off to running training at the AIS. Jarrett was the only one that could train as Nalani was hobbling along on crutches because of her knee injury. However we still all went for a walk around the perimetre of the AIS, Nalani said she needs to keep fit so came along on crutches, I wonder if there is a category for an athlete on crutches, but she is determined like me.
When we reached the entrance to the AIS building Nalani said her arms were aching from using the crutches so she waited while we got the car and picked her up, I was so proud that she is not giving up and that she still wanted to be active even though she is injured.
The rest of our Sunday was spent organising the last of our packing and cleaning ready for Friday. The house echoes at the moment because the rooms are fairly empty as we have most things packed up on the second level in the living area.
Today is a miserable day, it is so overcast and it is freezing cold. Rain has been forecast for the next few days and I think that it will come tumbling down within the next hour or so. On days like this I too feel miserable, I prefer the sun shinning through even if the air is cold because the sun reminds me of happiness and love whereas the clouds remind me of sorrow and pain.
The pain in my knee, hip, spine and ankle is terrible and even with warmth it just does not seem to subside. I have also had some dizzy spells today and they make you feel really disorientated and just plain weird but I try not to worry or dwell on it because tomorrow is another day and hopefully that will disappear. We had to pick Nalani up from school early today as her knee became sore and swollen during the day.
I have been deciding what to wear to my in-store book signing at Borders on Saturday. I don't think I will be able to wear a wig because as my patches of hair that are growing are quite spikey now and when I wear a wig my head becomes so unbearably itchy that it drives me crazy. I have noticed that some of my hair looks like it has a curl to it which I am excited about but it is not soft like it used to be it feels quite coarse and it is much thinner. I still have my lovely, shiny bald patches and I don't think any hair is going to grow in these spots but I am sure as the hair I do have grows, it will cover these spots.
'Minutes are like grains of sand that slip all too quickly through our fingers, we need to cherish each and every memory of everyday in our lives'
Saturday, May 22, 2010
Friday I was not alone at home, poor Nalani when she was running Cross Country on Thursday felt a twinge in her left knee when she was running in the second lap down hill and on Thursday night it became inflamed and more painful. We ended up getting her some crutches so she did not have to walk on it because that caused her dreadful pain. She commented that now she knows how I feel with all my pain and mobility restrictions. Nalani was lucky because for her swelling she could take a voltaren tablet and it worked very quickly to reduce her swelling and make her knee feel more comfortable. I am unable to take voltaren for swelling as it contains asprin, which thins the blood and my blood levels are still not back to normal following my chemotherapy. She is hoping that it is not too serious as she absolutely wants to run in the ACT Schools Championships on 31st May. She has a physiotherapy appointment on Tuesday so hopefully we will know more then. Whenever she has an injury she knows to follow the RICE method which is Rest, Ice, Compression and Elevation.
The day was fairly quiet, we watched a DVD and Nalani did some homework, she did mathematics and Human Movement work. For her mathematics part of it was to design a logo for a company using sketch pad on the computer, you have to type in functions which are like mathematical equations and then that is how your logo is formed. It looked really difficult, so it was lucky that Nalani knew what she was doing and I think her logo is really impressive, she then had to write about the company that she was designing it for. She decided it was a newly formed company that were gaining sponsors, producing merchandise, raising awareness and assisting families who had been affected by Brain Tumours. I think the logo would look terrific on a tee-shirt, cap, handbag, pen, soft toy or anything. Maybe one day her idea could be turned into a real company that did do that.
I have now received most of my appointments for Sydney. I have to see the Neurologist and have my MRI on the Monday, Tuesday is Physiotherapy Review, Clinic with my Oncologist, Occupational Therapy Review, Lumbar Puncture and Endocrine Review, that is a full day. I am unable to see the Orthopaedic Specialist because he is away on holiday, so he will be reviewing my knee, hip and ankle next time which is a little frustrating as that is what is causing me so much pain and anguish. We are waiting on when the Neurosurgeon can see us but that is likely to be Wednesday and then they are seeing if any further appointments need to be made following results. I also have some personal appointments which are my radio interview with WS FM on the Monday morning and it is going to be pre-recorded so I will let you know when it will air and I am having lunch with the generous and wonderful people from Sydney, Gavin, Ben, Paul, Tess and the Focus Creative Team on Thursday or Friday.
It was then time to go to Athletics ACT Awards Night and Jarrett had been nominated for an award. We sat at a table with Jarrett and Nalani's coach and people from his squad, as part of the night there were two sheets, one with logos and you had to write what they were for and another sheet had brain teasers on it. They were fun to do, our table did not win but we had lots of fun doing them. Then it was time for the business end of the evening, the awards, they started with the ones for Cross Country and went through the age groups it came to Jarrett's age group and they said something about each of the athletes who had been nominated and then the big announcement of the winner and the winner was JARRETT! He won a resplendent trophy for been the most outstanding Cross Country runner in the U16 Males, it had a gold athlete on it running and it had the Athletics ACT badge. I was so excited for him, he really deserved to win because he is so dedicated and focused on his running and has achieved some awesome results, he really puts a lot of time into his sport because he loves it so much. There were three athletes there Melissa Breen, Lauren Boden and Brendan Cole who are all going to the Commonwealth Games, I hope that they perform really well and maybe they will bring a medal home.
Another fantastic result from Friday night was the Wests Tigers win over Newcastle, they have finally found their winning spirit again through courage and determination. I hope that they will be on a winning streak from now on until the finals.
Today was another crisp start to the day with a thick frost covering the Canberra lawns. Jarrett went to running training but I had slept in from all the excitement of last night and of course Nalani could not train with her knee injury. It is a little better today but is still painful which is a bit of a worry for her. Mum was very busy cleaning the walls, white edges and windows today ready for moving on Friday. Nalani and I played Upwords and watched 17 Again the DVD, I love that movie!
Now it is not only me who is excited about our move, Nalani is very glad we are moving because she is finding negotiating stairs with crutches very tricky and her bedroom is on the second level.
In our lives it often seems that it never rains, it pours, we seem to have been given so many challenges in our lives lately and I wish I knew why. I remember though that only the strongest are given them and I also think it is to continue inspiring others.
'Life can't be counted in candles or measured in the number of years, it is counted by the small joys, good times, laughter as well as the heartache and tears'
Thursday, May 20, 2010
Wednesday was a frosty Canberra morning, one of those days when the grass crunched under your feet, then the sun streamed down, its rays melting away the frost and warming the air to a beautiful, almost perfect Autumn's day.
Today I worked on my assignments for school, the exposition on 'Who Built Burgmann' and then answering the questions on the worksheet on the Great Pyramid. It is so much easier for me to use my computer and I think I am becoming quite a reasonable touch typist.
My bones are still extremely painful and it runs from my ankle right up my leg into my buttocks and spine and it makes me feel really uncomfortable and rather ill also. Both my scars have also been sore all the time even with a lovely warm beanie to cover my head. These things are minor though compared to what other people in our world are probably suffering from.
We went to the shops in the later part of the day when the sun was at its highest point and I proudly went to the bank and had another cheque made out to the Sydney Children's Hospital Brain Tumour Fund. We also went to some businesses and changed our address ready for our move next Friday.
In the afernoon I went to physiotherapy but it was not for me, it was an appointment for Nalani and Jarrett to loosen their muscles before they had to run in the ASC Cross Country Event. They do stretches every single night to help keep their muscles in good condition and to hopefully prevent injuries.
For some reason I was so exhausted at night time that I drifted off to sleep whilst watching MasterChef. I woke and I was in bed and I was in dreadful pain all down my right side again so Mum gave me some more panadol and a humungous, warm hug. I woke several more times during the night with more aches and pains, yet again this is something I have become accustomed to.
Canberra was covered in a sheet of white fog and in the foggy, thick morning of today I woke up with pain all down my leg on the right side as it was freezing cold. Today was the ASC Cross Country that Nalani and Jarrett were competing in at Weston Park. Fortunately the veil of thick fog lifted to a terrific day for running. When we arrived at Weston Park Nalani and Jarrett did a walk through of the course and both commented on how hilly the course was and that the finish was on an up hill rise. They would both be doing two laps of the two kilometre course so we would be able to see them come through for their second lap, the venue was not ideal for spectators which was disappointing. Jarrett's race was first and he had had discussions with his coach during the week and they had decided that as he had run the school cross country and the ACT Cross Country race at Lyneham he was going to cruise this race so that in eleven days when it is the ACT Schools Championships he would be at his best form. At the start line Jarrett looked really small in build to many of the other boys who looked more like men, but Dianne reminded us that good things come in small packages and I think that is true about Jarrett. The gun went off and Jarrett took off like a bolt of lightning and led the race with a boy called Riley from Radford. When they came in for the first two kilometres Jarrett and Riley were very close, Jarrett was cruising and he had a huge smile on his face like he was really enjoying himself, he was not even puffing a bit like when he goes for his long runs with the squad on a Sunday. We waited at the finish line for the race to finish and Riley came across first, out of breath and exhausted but he had run well. Jarrett came in second not puffing at all and looked like he had just been for a jog around the block and he was smiling, he felt good. Both the boys beat the third place person by an easy eight hundred metres. Poor Lachie who Jarrett enjoys running against and has always been in the ACT Team with injured himself and it was disappointing to see that happen to him, he is like Jarrett extremely dedicated to his running. Jarrett kept waiting for him to come in so that he could check to make sure he was alright, runners seem to have a bond and they really care about each other.
Then it was time for Nalani's race, she lined up at the start line looking very much the part and very determined. The gun went off and she had an excellent start although she said that there was some elbowing going on. She came around in the first two kilometres and was in the top twenty, that is where she needed to be if she wanted to go through to the ACT Schools Championships with Jarrett. We again waited anxiously at the finish line and Nalani had a huge finish even overtaking a girl up the hill at the finish to come 13th, she had made it into the ACT Schools Championships also. She is running so well and I am so proud of her. Now on 31st May we will be going to Stromlo to see both of them run in the ACT Schools Championships, at this race people are selected to be in the ACT Team for Nationals. Nalani and Jarrett both received a special ribbon from Mr Prowse for being competitors for Burgmann and then I received a wonderful surprise he also gave me a ribbon for being there supporting them. He also gave me a label and it said 'Dainere - Legend' he thinks I am pretty special for not giving up and trying to keep participating in my sport. There was a presentation and Jarrett received a beautiful red ribbon for coming second, the ribbons were given out by Lisa Corrigan the 1500m Olympian. As I watched Nalani and Jarrett I thought to myself that I would like to set a goal of perhaps being there alongside both of them next year.
My application for disability classification is moving ahead and in about three months time I should know whether I have that classification, they think I definitely qualify for a T32 or T33 this qualification will allow me to compete up to a State level at the present time, how exciting would that be. Of course now I just have to be able to stand, walk and run, even though I am unable to do this right now I am going to believe that anything is possible and I will run again.
In the afternoon I was totally exhausted it had been such a huge day and I just wanted to rest and I looked at my knee and ankle and they were both grossly swollen and all I had done was sit in my wheelchair to watch however to get to the start and finish lines we had to go over some bumpy ground so obviously it had stirred things up again, what a nuisance but you can't just stop doing things and wrap yourself in cotton wool.
Tass, 'my number one salesman' called to let us know that Canberra Weekly are going to contact us as they are interested in doing a story about me for the magazine. It is so wonderful that people are still wanting to share my story and through that we can let more people know about my book and how together we can be a strong force and raise that awareness and funds.Tomorrow night we are going to the Athletics ACT Awards night, Jarrett has been nominated for an award, he really deserves to receive one because he is a dedicated runner, has achieved so much, is humble and always shows such good sportsmanship. I will let you know how he does, even if he does not win the award, he is my champion.
Tuesday, May 18, 2010
On a day that the sun just could not push through the clouds I went to school and we had Chapel first off. As we sat quietly and focused Mr Thorpe talked to us and then showed us a video about a man who went walking into a forest on a glorious morning with his young son in a backpack. As they walked he felt so drawn by the astonishing beauty and calm of his surroundings, then it clouded over and drip, drip, drip came drops of rain and they became larger and then more intense. His young son on his back started to cry as it scared him but as a father he comforted him and told him that everything would be alright, that he would protect him and keep him safe and get him home. He went on to talk about how in life we often have storms cross our path but we should know that God is always there walking alongside of us through that storm. I looked over at Mum and I saw that she had tears running down her cheeks and then I saw my teacher from last year was the same. I felt a lump form in my throat and I thought about this story and about my storm and how Mum had been there telling me that she was there and she wanted to make everything right. I then had little, crystal tears drip down my lashes and onto my cheeks. The story really touched all three of us and we were all connected by my journey, it was one Chapel that I will never forget.
After Chapel it was time for PE and we are now doing touch football. I bet you are wondering how I could do that. Well as a drill we had to go around the oval and pass the ball between three people and I did it. I found that I don't have much strength and can not pass the ball a long distance but I did it and then I was also able to catch it. We then did an activity where we were on teams and I was on the blue team and we had to pass the ball and then try to tip people on the other team and then we swapped places. The ball was passed to me and you could only take one step, but I had to just move roughly one step in my wheelchair, I did not tip anyone but I really enjoyed it. When the other team had to tip us, Mum was a little too slow at maneuvering me and we were tipped. I really think where there is a will, there is a way and I have proven again that you don't just sit back and give up, you can do anything you put your mind to. I am still in pain from the Cross Country and doing the touch football stirred it up a little again but I am not going to sit back and feel sorry for myself.
Following my excitement at PE we then had Insight and we were reading over and marking other students expositions. I found that to have an excellent exposition you really need to use persuasive language or your exposition loses its impact.
I have a new chair at school it is like an office chair and it is a swivel one, it does not have wheels which thinking about it now, it would maybe be better with wheels so I can move on the carpet. It is so great though to have a chair that is mine, it makes me feel like I am part of the class.
My head became really painful in the afternoon it was all over the outside and inside of my head and which ever way I put my head it felt awkward. I am also finding that I am unable to wear my wigs because as my hair is growing with a wig on it makes it itch. I also have what is like eczema in one large spot on my head and it is awful. My hair is still only patchy though and I have three distinct bald, shiny patches but hope as my hair grows longer I will be able to comb it over these bald patches. I guess I am never going to have that beautiful thick, long curly hair that I had and people recognised me for.
We received a letter from my oncologist to go to the Australian Paralympic Committee for me to receive my classification as a disabled athlete. He said that my High Risk Metastatic Medulloblastoma and the treatment for it had caused severe and devastating effects to my balance, hearing and coordination and they were irreversible.
I snuggled into bed which now has an electric blanket on it and it warms my muscles and bones and provides some relief. I woke several times during the night though with pain in my scar on the top of my head and stiffness and pain in my right knee and ankle. Mum looked after me and helped me go back to sleep.
Today I did not go to school until after recess which was a good thing after my restless night and we watched a DVD about the building of the Great Pyramids, we had a sheet of questions to answer, I was so slow with writing so Mum took notes so that I could answer the questions later and then the teacher gave me the DVD to take home to watch to also help me. We are going to watch a You Tube video about Aliens built the pyramids. We will then be doing an exposition about who we think built them. To do this we start with a big question and then five little questions and this helps us put it all together.
My tongue felt so unusual and painful today and Mum discovered that I have ulcers that are the same as the ones that I developed during my chemotherapy treatment, we treated them and I hope they will heal as having them make it quite difficult to eat. When I had the ulcers during chemotherapy they took a while to disappear. They are often a sign of low immunity as well so perhaps I might be coming down with something, there are many people off sick at school at present with colds and stomache viruses.
Tonight Tass and Gloria came to get another box of books, Tass has now sold 130, he is a legend and my number one salesman. I am so lucky that they are helping me in my quest to sell my books, raise that awareness and those desperately needed funds. Gloria showed me a picture she had taken at Angus and Robertson in the City and my book was on the best sellers shelf and beside Julie's from MasterChef, that really lifted my spirits and made me so proud.
The eczema in my head has worsened and is really bothering me, luckily I don't have lots of hair so we can rub some cream on the affected area. How strange I seem to be getting some new irritations like my tongue and head, it is almost like I am being tested to see how much I can cope with.
I have written emails and letters over the past couple of days, played Upwords, drawn a picture and helped Mum with her packing.
Life is so unpredictable, there are storms, there is sunshine, there is sadness and joy, if we treat our life as a gift that each day we unwrap a new and wondrous layer of paper we will be in awe of the surprise within.
Sunday, May 16, 2010
As my tiny, bony body aches from the Cross Country event on Friday I am smiling though because I achieved something that I dared to dream about and so desperately wanted to do for myself and to inspire others that some days you may think you are down and out but if you have that determination and courage you can have the sky light up in the magical colour of a rainbow. What I achieved on Friday was for me a rainbow stretching so magnificently across the crystal, blue sky of Autumn.
My head is throbbing and feels like it is a ticking bomb ready to explode any second, I have never had this feeling before but know it will be something else that I will learn and grow from.
Yesterday we went to watch Jarrett and Nalani run in an ACT Cross Country Club point score event at Lyneham. They were running 3.1km which I think is pretty courageous after both of them running the four kilometres just the day before. As they took off I wished that I was competing alongside them, I have moments like these when I wish I could just be that same person I once was so long ago for me now. Jarrett ran like a bullet again, I don't know how he does it, he was out front with an older boy and they had a huge lead on the rest of the field. Down the final hill to the finish they were fairly even and then the older boy, who had much longer legs than Jarrett, just crossed the line before him. Jarrett won his age group though and received maximum points for that and then Nalani came in and I could see that she was pushing herself right to the end, she was quite sore as she is not used to racing two days in a row, she achieved great points also and is still leading her age group on points.
We spent the remainder of the day packing ready for our move and I felt so physically exhausted that I fell asleep until dinner time. My body just is not the same as it used to be and every little activity that I do takes its toll on me and because I push myself, I think I may often overdo it and that is why I get so exhausted. I guess I do this because I don't know what lies ahead for me and I am just not going to sit back, life is far too precious to do that and I just want to make the most of every single day.
This morning was extremely chilly and slightly foggy as we headed to the AIS for running training, I was so rugged up I felt like an Eskimo living in Antarctica. As we walked though the sun came shining down upon us and I began to peel my layers off and I really enjoyed the sun on my bones because I was still in agony with them. After running training we went to Belconnen Mall to do some birthday shopping for Jarrett and while we were there we went into Angus and Robertson to see if we could see my book and I could take a photograph of me with it in the shop but the lady told us that they had sold out of all their copies in just the first day - Wow! how stupendous is that. Borders in the Canberra Centre have also sold out of all my books and I have my in-store signing at the end of May. We have 240 books left and then that is all that there are, they are in demand. I am hoping to fund a reprint so that everyone has the opportunity to purchase one, so together we can truly make that difference in the future for children who have brain tumours. I was saddened to read that Brain Tumours have the highest mortality out of all childhood cancers and they are the least funded, this is why it is so important to me to be the one who can maybe help this to change.
We are off to Church and I will be praying for all the children who are going through treatment at this time and pray that they will not be in too much pain and will recover.
I thank each and everyone who supported me through messages in my Cross Country I really could feel all the love and encouragement reaching me on that day. How blessed am I to have the warmth and friendship of such marvellous people.
Friday, May 14, 2010
A thick fog covered Canberra early this morning and the air was cold and crisp but as the sun pushed its way through the temperature raised and it became a perfect day to run Cross Country. I woke with pain probably due to the weather but today was the day I had been waiting for for so long and summoned all my courage and determination from within because I was not going to let pain ruin my day.
I was thinking about how rugged and bumpy the course was and how my bones would ache even more when a parcel was delivered to our door. I opened it and to my surprise it was a thick, soft, pink sheepskin that my Nana and Pop had sent as a surprise to put on my wheelchair to help my bones and also to use on chairs and in bed to help keep me warm and cushioned. I was thrilled, what a wonderful day to receive such a marvellous gift.
As the time neared to leave for the Cross Country I had those fluttering butterflies in my stomach. You know if you lack the courage to start then you have already finished. One thing I possess is courage and I was going to use that to make sure that I did the whole 3km and walked that last five meters no matter what. I guess in a way for me this was like a marathon rather than just 3km.
The gun fired and we were off and running, my course was slightly different to everyone else and in fact it was slightly longer, as Mum and I flew through the checkpoint where you have your hand marked to count your laps two Year Eight boys helped Mum run with me. We were passing people who had stopped to walk and as we hit the bumps my body vibrated with pain but I was not complaining this was a goal I had set myself and I was doing it. On our second lap one of the boys dropped off and a girl helped us, we were doing extremely well and it was only on this lap that the first place person lapped us. Before we knew it it was the third and final lap and we picked up the pace passing more stragglers along the course, so many people were cheering for me and even though the pain was pulsing through my body like a torpedo I knew we were almost there. Five meters from the finish line we pulled up and Mum helped me out of my wheelchair and to my feet, I was shaking all over and the pain worsened but I somehow found the strength to talk the first step, then the second and the third, Mum had to support me as I was extremely off balanced. My steps were small and each step brought more pain but that line was getting closer and closer and then in one splendiferous step I had made it and a huge cheer rung in my ears. I had done it, I had competed in the Cross Country Carnival and I had gone the whole 3km and I had walked over that finish line, I took a picture in my mind because this is one moment I want to treasure forever. I had not come last, I actually beat quite a few people in my age group. The Year Eight people who helped Mum push me I will always be grateful to and think they are exceptional people to have helped. I am also so proud of my Mum for running the whole race with me. I think I saw Mum wiping a tear from her cheek as we finished and she hugged me.
We came home and just before we reached our gate I broke down in tears, I think it was partly due to how emotional the day had been for me, the realisation I had achieved such a huge accomplishment and also the pain in my body was so intense.
After a well deserved rest and Lindt chocolate (thanks to Carol) Mum and I returned to school to watch Jarrett and Nalani run in their races. Jarrett ran first, I was so delighted to be there to see him run, I love watching him. He was well ahead of everyone else in the first lap and then began lapping everyone. He ran so fast, it was almost like he was a brilliant, quick flash of lightning in the thundery sky. He won by miles, easily broke the school record and had a huge smile on his face, as I congratulated him, he whispered in my ear that he did it for me. As usual he was extremely modest about his win, he spent more time congratulating and encouraging his friends.
Then Nalani ran she took off like a bullet and was leading the race then another girl was running with her over the next couple of laps and then Nalani took off and started to make a large gap between herself and the next girl. Nalani ran stupendously to come first by a good distance and she also ran a personal best time. I was so excited for her she showed so much determination she has had many obstacles to overcome over the years because of knee problems but she believes in herself and now she is the fastest runner in her age group at School, last year she came fifth so that is a huge improvement.
Jarrett and Nalani now go to ASC Zone Cross Country next Thursday at Weston Park, I am going to go and watch them and cheer them on. I hope that they will both go through to ACT's and then perhaps both of them then represent the ACT at the Australian Cross Country Championships in Brisbane in August. They received beautiful blue 1st place ribbons and then the PE teacher Mr Prowse came over to me and gave me my very own 1st Place Blue Ribbon because he said I came first in the Wheelchair category. I held the ribbon in my hand with pride and to me this ribbon will mean more than any other one that I may achieve over the next years.
One thing I thought about from today was that some people give up, there was someone who tried to cheat and others just don't participate and I really feel sorry for them because if they only stopped to think about how precious life is, or how lucky they are that they can actually run, or cheating never gets you anywhere it just gives you a bad name as well as making you feel pathetic and participating can actually give you some really awe-inspiring feelings. There are people that don't have courage, determination or integrity and I set them the challenge for next year to have a new perspective in their lives and they will really be worthier people for it.
As I sit typing this I am in agony not only are my bones aching and I have the most frightful pain on the inside and outside of my head similar to a headache but inside I am smiling a smile that would light the world tonight because of my superb effort today. Next year I am determined to at least jog the race and never give up no matter what hurdle is thrown in my path, because I have proven that they won't stop me!
' If you plant a seed of pain in the garden then it will grow into many beautiful flowers.'
Thursday, May 13, 2010
If you could take an eraser and rub out an entire day, that is what I would do with my Wednesday. I had the most agonizing pain throughout my whole body and it made me cry because nothing seemed to help it. I was hoping my physiotherapy appointment might help me, I went into the room with Rhiannon and when I tried to stand, the pain was absolutely horrific and I just collapsed. Rhiannon was so caring and she decided to use the ultrasound and some massage to try and give me some relief. I find that the ultrasound seems to help me and by the end of my appointment even though I was still in dreadful pain I had received a small amount of relief.
A ray of sunshine in my day was when Tess called. When I am in Sydney for my testing I am going to be doing an interview with Amanda Keller and Brendan Jones on WS FM they are extremely interested in my story. Although many people in Canberra know about my book and what I am hoping to achieve, it has not achieved the same momentum interstate and through this interview that is what we are hoping to achieve. If I can let more people know about my story and how I want to inspire and help others then the end result will be more awareness about Brain Tumours as well as those much needed funds.
My day was also brightened by a telephone call from Gavin who always makes me smile and Manda who we saw for her Birthday, she is a very special friend to Mum and I. I also received some wonderful emails from people, they must have sensed that I was having such an atrocious day.
I went to bed feeling disheartened by the pain I had throughout the day and still had but when I thought about all the people who are thinking of me and encouraging me that gave me an immense amount of comfort as my weary eyes closed.
After yet another restless night which is now what I consider normal because I know nothing else at present, I found that my pain had eased which caused me to take a deep breath of relief. Today I was able to buy some thermal wear to try to help keep the warmth in my body in the hope of reducing all the pain I have been having, I so hope it works.
Then after lunch when the sun was high in the sky and shinning in all its glory Mum and I went to school to do one last walk over the Cross Country Course. My whole class and my PE teacher walked it also and there are some places that I have to go a different way because it is just not accessible for a wheelchair but I can tell you that as we went around I felt such an excitement fluttering around inside my body. Doing the Cross Country has been a goal I have aimed for since missing it last year. I think that I will be able to walk around five meters assisted by Mum across that finish line and that will be a golden moment for me. I will hold my head high with pride, this is something I have wanted to do for myself but I am also doing it for my School House Guraguma which means 'The Wind' by me competing then I am gaining points for my house, I think it is important to contribute as a team to your house. I will then look ahead to next year because I am setting myself the goal of actually jogging the whole course and I know with determination, perseverance and courage that is going to happen.
Later in the afternoon my pain returned with a vengeance, hot water bottles, pain killers and deep heat hopefully will alleviate it ready for my big day tomorrow. Even if the pain is severe it is not going to ruin my day, I will fight it and I am going to be the victor.
My brother has a tee-shirt that says nothing is impossible and I think this is another great mantra to say to yourself whenever you think something is just too difficult to achieve.
I will give you a full race report on my Blog tomorrow and I think this is an event that will go down in history for me and be the beginning of bigger and better things to come in the future!
Tuesday, May 11, 2010
She's guided me the best she can
She's taught me like no other
and I'm thankful that I am the lucky one
Who gets to call her Mum.
My Mum is such an extraordinary person, she has held my hand, mopped by brow, toileted me, given me injections, reassured me, watched me suffer, given me hope, gone without for me and loves Nalani, Jarrett and I unconditionally. On Mothers Day I could not stop hugging her and telling her how much I loved her for all she does for me. I gave her the decoupage heart box that I had made and we gave her a new 'big' handbag. I think Mum's love big handbags because they seem to have absolutely everything in them, whenever you need a band aid it's in there, tissues, deodorant, pens, paper, needle and thread, it is almost like a magicians bag of tricks. Do you know what though was the most special part of Mothers Day, it was that we were all together as a family this year and that is such a precious gift, the gift of family and love.
I was in tremendous pain on that day I was unable to stand and even my scar was giving me more grief than usual it actually felt like it was ripping apart but it wasn't it was the weirdest sensation and quite frightening. I think I have told you before that there was significant nerve damage done where they cut to drain out all the excess fluid prior to removing the tumour and it often gives me some problems but on this day it was unbelievable.
I found a glorious spot in the house where the sun was streaming through the glass and I just sat and soaked up that sun into my aching bones and it felt almost like paradise, the warmth seeped through my body and made me feel so relieved then the sun disappeared and the pain returned but that short amount of time made such a difference.
This week is NAPLAN at school and as I am only a part time student and I would not cope with the amount of time and have missed all Year 6 work I am not taking part in the testing so it was suggested by my teacher that because I have been in so much pain having this week off would be beneficial to me. I have also had the return of the headaches that thump constantly and make my eyesight all blurry so having a break will hopefully help me for next week when I am going to go on Monday and Tuesday because then my Grade are off to camp.
Today however I was a special guest speaker at Senior School and Middle School assemblies, I spoke about my book, the launch and what I am hoping to achieve. Then after the Middle School Assembly I was signing and selling copies of my book. I sold thirty two copies of my book and the school also took orders for it which were around the same number.
Tass came today and took another box of thirty books, he has now sold one hundred of my books how fantastic is that. I now have three hundred and sixty books left to sell and I hope that I can all of those sold within the next month. I have already being sending money to the Sydney Children's Hospital Brain Tumour Fund and it would be so fanastic when I return to Sydney for all my tests if all my books were sold and the reprint was on its way.
I am so passionate about helping others and I do hope that people will continue to purchase my book. I have had so many encouraging comments about my book from people who have read it and it seems that I am touching people and inspiring them and this makes me feel so marvellous and I just want to keep having that feeling it gives me so much strength. Someone once told me that even when the odds are against you if you remain positive miracles can occur and I hold onto this thought constantly in the hope of that miracle.
The last few days have been difficult with the pain I have been experiencing as well as my mobility declining instead of improving and the headaches but I keep that smile on my face and my spirits up because you can't give up, I think this applies to anything that is happening to anyone in life. You have to look for at least one positive and build on that and then your negatives will still be there but the strength of positivity can outweigh them and ease them.
We have started packing our boxes ready for our move, I am counting the days I am seeing this move as a positive for me with my rehabilitation and the sooner it happens the better. I have been writing some poetry and doing some scrap booking and have played Upwords each day to help my spelling skills.
Some days it bothers me tremendously that I am unable to communicate verbally the way I can in thought and writing, I know what I want to say but it does not always come out and then sometimes my words come out pronounced wrong and that upsets me. I know it is part of the damage done by the tumour and nothing will change that and no matter how hard I try or how determined I am it is now part of who I am.
Friday is my School Cross Country and on that day I am going to possess so much determination and courage and I am going to walk - even if it is just a small distance after completing the 3km rugged and bumpy course across that finish line, it is a goal I set myself and I am not going to let myself or those who have supported me down. I will let you know how I go and I am going to try to get a photograph of the epic event. Jarrett and Nalani are also running that day, they are both running 4km and I know that they will also show courage, determination and good sportsmanship in their races and I am hoping that Jarrett will win his age group and break the school record and Nalani will come in the top three for her age group, they have trained with dedication for this day. Ever since I was diagnosed with my cancer Jarrett always says before he runs that he is dedicating his run to me because he loves me and thinks I am an inspiration.
Each day I wake up and am grateful that I am here and can still continue to work on inspiring others along the way.
Saturday, May 8, 2010
I woke up and wished my Dad a very Happy Birthday and gave him an enormous hug and a kiss because last year I was in Sydney having my radiotherapy when it was his special day, it made this year special to share it with him. I missed so many special events last year while I was having my treatment and you can't go back and make up for it so I wanted to make sure I could make this year extra special for him.
Even though I had abysmal pain all down my right side and into my lower spine I had decided that I was making my Dad his Birthday cake and nothing was going to stop me. I had decided to use lots of little patty cakes and build a tower to make them into a large cake. I made strawberry patty cakes, very sweet but mouth watering, I iced them with strawberry icing and sprinkles. As I placed a Happy Birthday sign and candle in the top patty cake I felt really proud of what I had achieved and I was sure Dad would love it.
We had a man come to do a quote for moving us and whilst he was going through the house, he realised who I was, when he was leaving he said he had to shake my hand because felt honoured to have met such an inspirational young lady. He then said it had made his day to meet such a celebrity and he wished me all the best for the future. How astonishing to have a stranger feel that way towards me but what he said truly warmed my heart.
Nana and Pop called and I had a chat to them, at the moment Pop is winning the footy tipping this year, but it is only early days yet. He already thinks that he is going to win but I think I am going to be like the Wests Tigers when they came from behind in the came against The Raiders and won.
Even though I felt miserable with pain I tried to put it behind me and I rode the exercise bike. As my feet went up and down on the pedals I let my self release all the frustration I was feeling and I was able to ride 2km in just over ten minutes. Unfortunately I paid the price for pushing myself through pain and my knee ballooned up to almost the size of a water melon, that is actually probably an exaggeration but it was HUGE! Then I could not even put any weight on it at all and when I tried it I felt like a wilting flower drooping to the ground.
I did my Mathletics and I have gained another Bronze certificate, I really love doing my mathletics it was something that helped me keep up with my school work when I was in Sydney last year and I find maths quite easy even though I have missed so much school and I think it is because I was able to do the Mathletics whilst being so ill.
We had pizza from the Palmerston Take Away because Dad loves how they make lovely, fresh pizzas there and then it was time for my cake - Dad absolutely loved it and so did the rest of the family. I think Dad had a really wonderful Birthday and that perhaps my cake was the highlight of his day.
I had the most horrific night sleep last night, I was in so much pain and even though Mum tried everything, nothing seemed to ease the pain and then my knee stuck and she had to massage it to release it. She gently stroked my head and I think that is what finally helped me sleep, as well as been just totally exhausted. This morning I was still in pain and felt so tired and when I looked in the mirror I had bags under my eyes. Mum said we looked like twins because she often has those.
Running training was at Stromlo today and Nalani and Jarrett are getting themselves ready for the Cross Country at School on Friday. The are really looking forward to it just like me and they are hoping that they will get the chance to cheer me on at the end of my age group when I try to walk. I will definitely be there cheering both of them on as loudly as I can, I am so proud of both of them and I think they are the best brother and sister in the whole wide world.
Our house was on exhibition for rent today, Mum made sure it looked wonderful as usual, actually when we have had visitors they have said our home looks like a display home. I signed some more books ready for Tuesday's assembly at school and wrote some thank you letters to people who have written to me. I think it is really important to acknowledge people's kindness with a special letter. I helped pack some books that people had ordered online, we had five in one day, I really hope they enjoy reading my story.
I am now resting because I am a extremely tired still from my dreadful night sleep and my right side is still aching. I think I am going to get used to it just like the continual ringing in my ears, it bothers me but I live with it.
To all the Mums I wish you all a very special day tomorrow. My mum is an extraordinary person who has been there for me through everything and I love her very much, the verse I have included is one that Tess sent to us and I wanted to share it with all of you.
'A mother is the truest friend we have, when trials, heavy and sudden fall upon us. When adversity takes the place of prosperity. When friend's who rejoice with us in our sunshine, desert us when troubles thicken around us. Still will she cling to us and endeavour by her kind precepts and counsels to dissipate the clouds of darkness and cause peace to return to our hearts'.
Thursday, May 6, 2010
On a day that felt like the middle of winter instead of Autumn with icy winds and almost snow like clouds Mum and I bravely headed off to school for my third day in a row at school in a week, normally I go every second day but this week was different and I am afraid that it has really made me extraordinarily fatigued. On this day though it was my favourite lesson and that was art electives, but before art we had an SRC meeting to put ideas forward for our SRC to take to the Principal and selected teachers. There were some interesting ideas of more sport, discos, uniform and then I was asked if I would like to add anything so I said that I think there needs to be a ramp up to the oval as the only access is via stairs, going up the steep side of the oval which is rather dangerous or going around the really long way which is also very bumpy but my idea was not only for me I was thinking of a girl who is on crutches in a lower grade and also if anyone is actually injured on the oval the difficulties in getting off also. The two SRC representatives thought this was a really terrific suggestion and it will be taken to their next meeting. Then it was time for art, we have a new teacher and she seems really nice, we are now in the portable building which is the temporary art room at present it was quite cold in there and echoed just like the science lab but I was not going to let that bother me. We worked on doing printing, we first had to look at our fingerprints which are unique to every person and then we had to draw on foam a pattern similar to a fingerprint. Once that was finished we used ink to do a print on paper. I used pink ink of course because that is my favourite colour and I was delighted with how mine turned out. The teacher said we are going to make a wall of 'most wanted' using our prints, it will certainly brighten up the walls of the building.
Whilst I was in art I had terrible pain in my spine and knee but even though I felt like crying with it I ignored it the best I could. I so don't want my pain and limitations to stop me from doing the things I love the most. But on the way home, I cried as the cold air hit my already sore body. A couple of hot water bottles, some pain killers and a warm cup of tea eased it a little so that it was more bearable.
I came home and had a sleep, as I said I feel so exhausted this week it is almost like how I felt going through chemotherapy and was so energy depleted. After my sleep I signed some more of my books ready for the assembly on Tuesday at school and answered some emails that people had sent. In the evening Tass came over, he has been an amazing seller of my books, he has sold 70 already and he came to collect another box. He deserves a gold medal for his effort!
With a drooping, flickering right eye and increasing pain I went to bed in the hope of sleeping and finding some comfort. I slept for a while but woke with my bones aching again, slept for a little and then woke again and then the alarm went off.
Today I did not go to school I rested instead. I had a lovely visit though from Tracey Hawkins a fellow author (how marvellous does that sound), we spoke about my launch, books in general, what she is up to now, family and many other things. I gave her a special signed copy of my book and we are going to catch up again when we move house. She also gave me a pen with the words Special Friend on it and on the box were the words 'When friends meet, hearts warm' how true is that? I am going to send some of my poetry to Tracey for her to read, she can also give me some tips on whether it is good or not.
Then in the afternoon after I had had a sleep again we talked to Carol from ABC Newcastle she is one of the people who worked so enthusiastically and with a heart of gold on my book. It was just awesome to actually talk to her and I felt like I was talking to an old friend. She is so tender hearted and I really liked her. The story will be on ABC Radio Newcastle tomorrow.
We had to go to running training for Nalani and Jarrett and by the afternoon the weather had turned so arctic again and I was unable to go for my walk around the oval in my wheelchair, I wish wheelchairs could have those heated seats like some cars do, that would make a huge difference in places like Canberra.
'Love is understanding through difficult times, being able to laugh to keep from crying and always being there for each other'.
Tuesday, May 4, 2010
I had to write this now before I am too exhausted to lift my little fingers across the keyboard. I have had a couple of huge days at school as well as an appointment with my paediatrician.
Monday I cheerfully went off to school clutching my laptop in my lap as we wheeled along the path. This was my first Monday at school for this Term and I was ready to work hard, our first subject was Integrated Studies and we are looking at debating. We looked at appropriate ways to present and contest points of view. The practise topic that we looked at was 'Homework is really important', I think that it is because it helps us to revise or finish work that we have done in class during our lesson time, it also helps you when you are in your later years of schooling and have to study for exams. I was able to use my laptop to type some points and it was so much easier than me trying to write it or Mum having to scribe it for me. I got a whole page typed but I did find my hands felt weak just like when I type my Blog.
I excitedly anticipated my next class which was PE, WOW! it would be the first time I had done it since March last year. We were doing Cross Country practise and that was one of my favourite sporting activities before my brain tumour took over my life. My friends Yana and Chloe helped Mum to push me around the course and they found that it is not easy to control a wheelchair, they seem to have a mind of their own, in fact I would say they are worse than shopping trolley's! The course was fairly bumpy and difficult but that is what Cross Country courses can be like and I love a challenge. I was so thrilled to be part of the PE class with our teacher Mr Prowse and my friends who by the way did an excellent job for their first attempt at pushing me over the course in my wheelchair. I can hardly wait now until next Friday 14th when it is Cross Country Day at school. Not only am I getting to participate and hope to walk at least ten metres, with assistance across that finish line, I will also get to see Nalani and Jarrett run in their races. I think Jarrett is hoping to break the school record again this year and I believe he can do it and Nalani is hoping for a top three placing so she can then go to districts again, even though she is coming back from that calf sprain I also believe in her.
We returned to class after PE to do some more work about debating, I was sitting and I suddenly felt really nauseous and had a throbbing headache that ripped through the right side of my head. Luckily it was time to leave to go home at recess and when we came home I took panadol and slept. The headache remained for the rest of the day but the intensity of it improved so when I went to bed it felt like it was in the distance.
I had an appointment with my paediatrician late that afternoon and he talked to me about my book and said that every family going through any cancer treatment should read it as a resource. He said that I am an extremely inspiring young lady and that what I was doing was wonderful because it was so selfless. He checked my height and weight and I have not gained nor lost weight but my height was a little shorter. I have had further deterioration of my right side, flickering of my eyes, he feels muscle damage from the Vincristine and Sydney told me that last time and said it would be permanent, he looked behind my eyes and could see a mass but it was not a large one like when I was first diagnosed. He said the MRI in June will tell us what is going on and if there are any new changes. I have to see him again on 12th July, he said everything is all slow progress when you have what I do and that I will have good and bad days. When we told him about my headaches he thought that it could be from concentration or tiredness, or tumour growth but once again reinforced that the MRI will reveal more.
I had a dreadful night sleep waking regularly with knee and ankle pain as well as bladder issues but this is something else I have become used to, waking every night. So I slept in for a bit this morning knowing that I did not have to go to school until after recess today. I would not normally go two days in a row but because there was a presentation to help us with our debate the teacher thought it was valuable for me to be there. My headache has gone today but my eyes feel really heavy and tired. I put together my Australian Studies assignment this morning and played Upwords and then we headed off to school. The presentation was interesting because we heard different points of view about 'Who Built our School' the team I am going to be on has to argue that the parents did, others have to say that the teachers and students did, another group say the Church did and the last group say that the Government money and builders did. Luckily Mum was there to take notes, she took three pages of notes for me so I will be able to use them to help me in my group.
Wonderful news - I received fifteen more boxes of my books today and then that is all. Many people have told me that it is now in bookstores and I am looking forward to going into one and actually seeing it, I think that will be a photograph moment. I hope all my books sell out, so please buy one and help the Brain Tumour Fund, many people together can make a difference.
I have had some touching and inspiring comments from strangers who have bought my book and I feel so honoured that they have read my book and it touched their hearts and lives. I also received a beautiful card from Anna and I wanted to share the verse with you. It has butterflies on it and it says 'Happiness is a butterfly which when pursued, is always just beyond your grasp, but if you sit down quietly, it will gently sit with you'.
Sunday, May 2, 2010
On a bright and clear Canberra morning we headed off to Stromlo for running training. Stromlo is the Cross Country track in Canberra and although it seems quite flat it is deceiving because there are actually some hills that really can be difficult even for the seasoned runners. Nalani is coming back from her calf sprain so she did some jogging intervals while Jarrett did 1km reps. The sun felt so marvellous on my aching bones and I almost feel asleep because I had had a dreadful night sleep with pain all down my right side as well as feeling a little dizzy in my head.
After running training we went to visit my Uncle James and Aunty Kate. They were talking about my book, the launch and how terrific it is that I am doing fundraising by myself for a cause that I really believe strongly about. Aunty Kate made some scrumptious blueberry muffins for morning tea from a new recipe book she bought. My Aunty Kate is an excellent sweets cook, her cheese cakes are incredible!
I came home and decoupaged a heart shaped box I am going to give it to someone very special but I can't tell you because it will spoil the surprise. Then we had a visit from our GP who was unable to attend my launch but really wanted a copy of my book. We chatted for some time and he mentioned that with me being unable to eat much food it could actually be that my enzymes were affected from the chemotherapy because it was at such high doses and if the enzymes are not working properly then it means that I would not be processing my food through my body correctly. He wants me to mention to my oncologist this and suggested that even perhaps an enzyme supplement may be of benefit to me.
I was excitedly awaiting a special visitor later in the afternoon, it was Gavin and his beautiful fiance Gill, she looks like a movie star or a princess. I was so worried about him after his motor bike accident and it was so terrific to be able to give him a big hug. He does not look too bad but I could tell that he was still in a bit of pain and found things like talking and moving difficult. I don't think he likes not being able to eat decent food and only survive on soup at the moment. He is such a special person, he is one of the miracle men behind my book and I can't believe that this happened to him. I again question why terrible things happen to all the really wonderful, kind and caring people. Then I am reminded that only the strongest and most special people are given these journey's because it makes us better people. Gavin and Gill were telling us all about their wedding that is going to be in July. I think that they will be very happy together and will have many rainbows in their lives. I think that even though my journey is devastating that I am so fortunate to have travelled it because I have met the most phenomenal people, like Gavin, Tess, Paul, Ben, Liam and many others.
At night we watched Enchanted, I really love that movie. I went to bed extremely tired and sore again on my right side as well as having louder ringing in my ears than usual. But I had had a really terrific day.
It was another sunlit day in Canberra this morning and an exquisite morning to go for a walk while Jarrett was doing his running training from the AIS. As we walked along and I was in my wheelchair, I had some dreadful shooting pain going through my right knee. I find when I have so much pain all the time that it really zaps a lot of energy out of me.
After coming home from running training and taking a dose of panadol to ease my pain we headed off to the shops to finish off Dad's Birthday shopping and do Mothers Day shopping. Last year Mum and I were in Sydney for Mothers Day and I remember Mrs Galloway coming to visit us and then going to the shops at East Gardens.
In the afternoon I worked on a memorable project for my Dad for his Birthday, it is a photo frame and I have used my scrap booking materials and placed two photographs on a background with rainbow colours on it and then put a butterfly and flowers on it. On the outside of the frame I have put some really cute circle puffy stickers. Then on the back I wrote a special message to Dad. I really hope he will be excited to receive it on his Birthday on Friday.
I helped Mum make vegetable slice for dinner tonight, I am getting to be an expert at cracking eggs now!
We had more orders for my book online over the weekend and I am so thrilled that many people are ordering more than one book. We have now sold over four hundred books, another four hundred are coming next week and then Borders and Angus and Robertson have one thousand between them and they are supposed to be starting to have them in store from next week. We are looking at having a reprint done and hopefully we will sell all the copies of my book that are printed. My book is reaching far and wide because people are sending it to South Africa, America, England and Canada as well as all around Australia. I hope that we can raise as many funds as possible to go to the Sydney Children's Hospital Brain Tumour Fund. Once my book is all sold I guess I will have to start thinking about other ways that I can help.
'We all have a magnet in our hearts that will attract true friends. That magnet is unselfishness if we think of others first then we can learn to live for others each and every day of our lives'