24th to 26th October 2010
Having to be without Mum was absolutely devastating, I felt like I was been punished but for what crime I do not know. I hugged Theodore as tightly as I could and he gave me a little comfort in this cruel situation that has left me feeling so confused and hurt.
When Mum arrived on Sunday at 9.30am we both hugged each other in the tighest hug you could ever imagine. When Mum is with me I feel secure and safe when she is not there I am so scared of what may happen to me. I have felt like a prisioner, treated like I have committed a crime but it is not me who is in the wrong, I have done everything possible in my journey to do the right thing, listening to the doctors, being brave and taking each painful procedure in my stride.
I was told to walk which I am able to do a little of, but I was given no support and I do not have my rollator here so I was extremely off balanced and wobbled, my right ankle has been re-injured and is swollen and painful. The fact that I have had a Brain Tumour has not been considered, I am not an ordinary twelve year old, I have been left with side effects from my tumour and the treatment, this is something I can not help. It did happen and I can not change that so I am so confused as to why now it is not cared about.
Please if you are having chemotherapy and lose more than ten per cent of your body weight request that your doctor do something about it, don't just accept that you will pick up later. Also when you finish all your treatment ask that you are given a dietary plan, I ate well but it was not enough apparently and now I find myself in this dispicable situation. I want to help others so that they won't have to go through this.
Dad arrived on Monday together he and Mum can work as a united front to sort this all out. My paediatrician at home was looking after this, what has happened is not right. Why am a pawn in the middle of this and being categorised without a proper assessment, I am confused and scared.
My ankle is so sore and swollen, I have to go to have an xray, perhaps some serious damage has been done to it. Another hurdle and just when it was going so well, this whole experience has been such a horrendous storm but I still hold the hope and remain positive that my rainbow will appear very soon and my life can bring me some happiness.
Life is too precious to waste, there are so many things I wish to do and this is wasting my time, that I can not go back and retrieve. Thank you for all your support, comments and prayers I hope that I can update you with some positive news soon.
Tuesday, October 26, 2010
Saturday, October 23, 2010
ARRIVING IN SYDNEY AND NOT WHAT I EXPECTED
22nd and 23rd October 2010
I was so nervous as I waited to go to the airport for my unexpected flight to Sydney, the butterflies were fluttering at a hundred kilometres an hour and did not want to stop, I also had this terrible feeling like the ones I had during chemotherapy when things did not quite go as expected.
In the morning when Jarrett and Nalani went to school, they were both crying and so was I as I gave them a huge loving hug. Jarrett asked if he could come to the airport with us to say goodbye but we told him that school was more important.
After checking in at the Qantas desk we were told that the plane we would be flying on was on the Tarmac and we would require a special lift to get me onto the plane. We waited patiently for the special assistance person who was helping us to come. We got to walk where all the action was taking place with the busy Qantas Staff getting everything ready for various flights. I looked ahead and saw a spectacular bright pink Dash 8 aircraft sitting on the Tarmac, it was a special breast cancer one, it was our plane. The special lift came and I got to go in a little wheelchair and went up in the caged lift, it was quite an adventure. On the plane our seats were right near the propeller so I could see it slowly start to gain speed and take off. I thought having a pink aircraft was a good omen.
On the plane I remained quiet and in deep thought, I know that I am a strong person and very determined but do I have to face this many obstacles and being dragged away from my home and family makes me feel angry and upset. When I mentioned to the Airline Attendant that I was going to hospital in Sydney, he went and got me a whole pile of raspberry cream biscuits and said they would be better than hospital food! That was so generous and thoughtful of him.
We arrived in a hot and streamy Sydney and I still had those butterflies fluttering around in my little stomach and then we went to admissions we were told that there was no bed available until 4pm and we had been told by our doctor we had to be there by lunchtime. So we left our bags at admissions and went for lunch, I enjoyed some strawberry and cream pancakes with Mum and I had a Coke Spider, they put heaps and I mean heaps of icecream in a large glass and gave me the can of Coke, I poured a little in and immediately it bubbled and rose to the top of the glass.
Mum and I decided that because we had a couple of hours still to waste we would take a walk down to Coogee Beach, we were half way there when we received a call from the Hospital to say the bed was now ready. So Mum had to walk back up the hill as quickly as she could and the hill down to Coogee is rather steep.
I was admitted and given a bed, I was expecting to see a Paediatric Cardiologist which is what we were told but suddenly I was surrounded by all these other specialists, I had blood taken, blood pressure done and weighed and measured, I had still retained the weight that I had put on when I was measured in Canberra on Monday so I was happy with that.
Mum asked when the heart monitoring would begin and we were told that we would be seeing a Nutritional Team instead. Mum was not impressed, all of this could have been done in Canberra under my wonderful paediatrician and if he had of thought it necessary he would have sent me to Sydney, we had gone to Sydney and really had not needed to, I think they just like to control everything and don't think our doctors in Canberra are capable.
Anyway while Mum was taken away to talk to a doctor, I was whisked away and a nasal gastric (NG) tube was inserted into my nose and down my throat, I had one after my surgery and it is the most uncomfortable feeling and it is difficult to swallow with it in.
My weight has been slow to pick up since my ordeal and during Chemotherapy it plummeted and the doctor saw no real urgency about it. I had just been eating really well, putting on weight and feeling much better within myself so I could not believe they were doing this to me, I asked for Mum but they told me she could not be with me, I was so terrified I lost my voice, almost like mutism and could not speak but I wanted to tell them no! not without Mum, Mum help me! I cried and when Mum returned from talking to the doctor she was taken by surprise, she had not given permission for this to be done to me.
An EGC was done of my heart and everything was fine, bloods were done my potassium and phosphate were a little low so I was put on a supplement as well as some calctrate for my bones, this again could have easily been done in Canberra. Through the NG tube I would be given Ensure at night it puts weight on rapidly but the only problem is that if it is done too suddenly then other problems can occur.
I had a dreadful night sleep, I felt uncomfotable, frightened and just wanted to go home, Mum slept in a chair beside the bed and said it was terrible but at least she was there beside me as usual.
This morning things went from bad to worse, they gave me less food to eat than what I do at home, I can't understand what is going on and they are trying to say I am like an annorexic person, but I am not, I eat, in fact I have been eating well, I certainly don't make myself sick after eating or go out and do crazy exercising either. Mum is not allowed to stay with me and they are sending her to a Lodge it is like they are blaming her but my Mum always looks after me.
Worse still is that because of where I am, Mum can only visit at certain times from tomorrow, from 9.30am to 8.30pm tomorrow but on Monday I will only be able to see her from 4.30pm to 8.30pm, I am so frightened, I don't want to be alone, I am scared that they will do something to me again without Mum's permission, this does not seem right. I know that my weight is a little low but Jarrett is on the bottom three percentile and he does not have to have this done, my Nana, Uncle and other members of our family are only small, they have fast metabolisms that burn fat quickly, I am probably like that it would most likely be hereditary like low blood pressure.
My heart rate is perfect., my blood pressure and all my blood tests are good, I am in no danger of having a cardiac arrest now and probably never was and my seizures are exactly what my paediatrician said they were from the Brain Surgery, so I should now be able to be released home. My friend Emily was going to come visit me today to cheer me up and so was Tess but we were told to ring them and cancel it as they did not want me to have visitors. I am not sick, I can not understand this, I have been crying lots and then they are trying to say it is about my weight but it is nothing like that it is because I want to be home, they won't listen to me, it is awful.
At least I have Theodore with me, he has been through everything and I know that through having him there again I will find the strength to get through this and get back home to Canberra as quickly as I can with my paediatricians help. Thank you for all your truly wonderful and supportive comments as well as touching stories to help me through.
I was so nervous as I waited to go to the airport for my unexpected flight to Sydney, the butterflies were fluttering at a hundred kilometres an hour and did not want to stop, I also had this terrible feeling like the ones I had during chemotherapy when things did not quite go as expected.
In the morning when Jarrett and Nalani went to school, they were both crying and so was I as I gave them a huge loving hug. Jarrett asked if he could come to the airport with us to say goodbye but we told him that school was more important.
After checking in at the Qantas desk we were told that the plane we would be flying on was on the Tarmac and we would require a special lift to get me onto the plane. We waited patiently for the special assistance person who was helping us to come. We got to walk where all the action was taking place with the busy Qantas Staff getting everything ready for various flights. I looked ahead and saw a spectacular bright pink Dash 8 aircraft sitting on the Tarmac, it was a special breast cancer one, it was our plane. The special lift came and I got to go in a little wheelchair and went up in the caged lift, it was quite an adventure. On the plane our seats were right near the propeller so I could see it slowly start to gain speed and take off. I thought having a pink aircraft was a good omen.
On the plane I remained quiet and in deep thought, I know that I am a strong person and very determined but do I have to face this many obstacles and being dragged away from my home and family makes me feel angry and upset. When I mentioned to the Airline Attendant that I was going to hospital in Sydney, he went and got me a whole pile of raspberry cream biscuits and said they would be better than hospital food! That was so generous and thoughtful of him.
We arrived in a hot and streamy Sydney and I still had those butterflies fluttering around in my little stomach and then we went to admissions we were told that there was no bed available until 4pm and we had been told by our doctor we had to be there by lunchtime. So we left our bags at admissions and went for lunch, I enjoyed some strawberry and cream pancakes with Mum and I had a Coke Spider, they put heaps and I mean heaps of icecream in a large glass and gave me the can of Coke, I poured a little in and immediately it bubbled and rose to the top of the glass.
Mum and I decided that because we had a couple of hours still to waste we would take a walk down to Coogee Beach, we were half way there when we received a call from the Hospital to say the bed was now ready. So Mum had to walk back up the hill as quickly as she could and the hill down to Coogee is rather steep.
I was admitted and given a bed, I was expecting to see a Paediatric Cardiologist which is what we were told but suddenly I was surrounded by all these other specialists, I had blood taken, blood pressure done and weighed and measured, I had still retained the weight that I had put on when I was measured in Canberra on Monday so I was happy with that.
Mum asked when the heart monitoring would begin and we were told that we would be seeing a Nutritional Team instead. Mum was not impressed, all of this could have been done in Canberra under my wonderful paediatrician and if he had of thought it necessary he would have sent me to Sydney, we had gone to Sydney and really had not needed to, I think they just like to control everything and don't think our doctors in Canberra are capable.
Anyway while Mum was taken away to talk to a doctor, I was whisked away and a nasal gastric (NG) tube was inserted into my nose and down my throat, I had one after my surgery and it is the most uncomfortable feeling and it is difficult to swallow with it in.
My weight has been slow to pick up since my ordeal and during Chemotherapy it plummeted and the doctor saw no real urgency about it. I had just been eating really well, putting on weight and feeling much better within myself so I could not believe they were doing this to me, I asked for Mum but they told me she could not be with me, I was so terrified I lost my voice, almost like mutism and could not speak but I wanted to tell them no! not without Mum, Mum help me! I cried and when Mum returned from talking to the doctor she was taken by surprise, she had not given permission for this to be done to me.
An EGC was done of my heart and everything was fine, bloods were done my potassium and phosphate were a little low so I was put on a supplement as well as some calctrate for my bones, this again could have easily been done in Canberra. Through the NG tube I would be given Ensure at night it puts weight on rapidly but the only problem is that if it is done too suddenly then other problems can occur.
I had a dreadful night sleep, I felt uncomfotable, frightened and just wanted to go home, Mum slept in a chair beside the bed and said it was terrible but at least she was there beside me as usual.
This morning things went from bad to worse, they gave me less food to eat than what I do at home, I can't understand what is going on and they are trying to say I am like an annorexic person, but I am not, I eat, in fact I have been eating well, I certainly don't make myself sick after eating or go out and do crazy exercising either. Mum is not allowed to stay with me and they are sending her to a Lodge it is like they are blaming her but my Mum always looks after me.
Worse still is that because of where I am, Mum can only visit at certain times from tomorrow, from 9.30am to 8.30pm tomorrow but on Monday I will only be able to see her from 4.30pm to 8.30pm, I am so frightened, I don't want to be alone, I am scared that they will do something to me again without Mum's permission, this does not seem right. I know that my weight is a little low but Jarrett is on the bottom three percentile and he does not have to have this done, my Nana, Uncle and other members of our family are only small, they have fast metabolisms that burn fat quickly, I am probably like that it would most likely be hereditary like low blood pressure.
My heart rate is perfect., my blood pressure and all my blood tests are good, I am in no danger of having a cardiac arrest now and probably never was and my seizures are exactly what my paediatrician said they were from the Brain Surgery, so I should now be able to be released home. My friend Emily was going to come visit me today to cheer me up and so was Tess but we were told to ring them and cancel it as they did not want me to have visitors. I am not sick, I can not understand this, I have been crying lots and then they are trying to say it is about my weight but it is nothing like that it is because I want to be home, they won't listen to me, it is awful.
At least I have Theodore with me, he has been through everything and I know that through having him there again I will find the strength to get through this and get back home to Canberra as quickly as I can with my paediatricians help. Thank you for all your truly wonderful and supportive comments as well as touching stories to help me through.
Thursday, October 21, 2010
A TELEPHONE CALL THAT HAS TURNED MY LIFE UPSIDE DOWN
21st October 2010
This is a special Blog entry today, it is another twist in my journey which has turned my life upside down and has made me more disconsolate than even my diagnosis with a brain tumour. Late yesterday afternoon we received the deplorable telephone call from Sydney. They wanted me to organise to get there as quickly as possible because they had reviewed information about my seizures with other medical professionals, along with my weaker pulse and blood results, they are deeply concerned that what we have thought to be seizures may be mini strokes. They are admitting me to hospital for tests with a Paediatric Cardiologist, you see there is a five per cent chance after having my high doses of radiotherapy and chemotherapy that there can be heart damage and the possibility of stroke. Mum questioned some things and they told her that they felt they wanted to see me sooner rather than later and if anything happened overnight she was to take me to hospital immediately. Well nothing did happen, except for my usual pain and joints stiffening so this call has left us all really puzzled.
Even though I face pain each and every day and I am debilitated when I do have the seizures which is what I will still call them unless diagnosed otherwise, I actually am feeling well considering all I have had to endure and will always retain a positive outlook, so you can see why this telephone call really hit me like a ten tonne brick. I have so many wonderful events and experiences coming up at school and home, I don't want to miss out on any of them especially the fun run and my Raising Awareness presentation, I would be absolutely devastated to miss them and there is no way that I intend to miss them.
Today I went to school, it was to help me to forget about the telephone call and it did because I was so occupied doing Australian Studies in which we were given an assessment task about the Australian Flag, it is an assessment where you have to put much thought and creativity into it. After Australian Studies it was double Maths and we were working on a Rich Task where you choose the work you are going to do and gain stars for completing it. I did a Glossary of Terms for Angles and earnt two stars and then did two worksheets they were both worth two stars each also. We have to have achieved a certain number of stars by a given date. Even though my mind was in a total whirl today, I am slowly starting to really comprehend angles, practise certainly does pay off.
When we came home at Recess, Mum had to organise our airline flights for tomorrow, as well as reorganising and cancelling numerous appointments that we had. Once at home Mum and I both sat down and cried together, Mum takes such good care of me and thinks it is so unfair that I have to face so many hurdles. I just want to have a life, I am trying to move on and make the most of each and every day but this is like Mount Everest appearing in my path and I don't know how I am going to climb it.
In the afternoon we had running training, it was a lovely Spring day with just a gentle soothing breeze in the air, so Mum and I went for a walk around the oval in my wheelchair, the fresh air really clears your head, if I can't go over this mountain then I will go around it before attempting to climb it. We saw a family of rabbits nibbling the lovely, thick green grass, normally as you approach them they hop away nervously but today one rabbit just sat there nibbling, we were so close before it hopped off into the safety of its burrow.
I will keep you all updated on my progress in Sydney but now I have to go and pack my suitcase ready for our departure tomorrow morning.
'Sometimes we let fear stand between us and our rainbow but if we have courage, our hopes and dreams will lead us to our pot of gold in life'
This is a special Blog entry today, it is another twist in my journey which has turned my life upside down and has made me more disconsolate than even my diagnosis with a brain tumour. Late yesterday afternoon we received the deplorable telephone call from Sydney. They wanted me to organise to get there as quickly as possible because they had reviewed information about my seizures with other medical professionals, along with my weaker pulse and blood results, they are deeply concerned that what we have thought to be seizures may be mini strokes. They are admitting me to hospital for tests with a Paediatric Cardiologist, you see there is a five per cent chance after having my high doses of radiotherapy and chemotherapy that there can be heart damage and the possibility of stroke. Mum questioned some things and they told her that they felt they wanted to see me sooner rather than later and if anything happened overnight she was to take me to hospital immediately. Well nothing did happen, except for my usual pain and joints stiffening so this call has left us all really puzzled.
Even though I face pain each and every day and I am debilitated when I do have the seizures which is what I will still call them unless diagnosed otherwise, I actually am feeling well considering all I have had to endure and will always retain a positive outlook, so you can see why this telephone call really hit me like a ten tonne brick. I have so many wonderful events and experiences coming up at school and home, I don't want to miss out on any of them especially the fun run and my Raising Awareness presentation, I would be absolutely devastated to miss them and there is no way that I intend to miss them.
Today I went to school, it was to help me to forget about the telephone call and it did because I was so occupied doing Australian Studies in which we were given an assessment task about the Australian Flag, it is an assessment where you have to put much thought and creativity into it. After Australian Studies it was double Maths and we were working on a Rich Task where you choose the work you are going to do and gain stars for completing it. I did a Glossary of Terms for Angles and earnt two stars and then did two worksheets they were both worth two stars each also. We have to have achieved a certain number of stars by a given date. Even though my mind was in a total whirl today, I am slowly starting to really comprehend angles, practise certainly does pay off.
When we came home at Recess, Mum had to organise our airline flights for tomorrow, as well as reorganising and cancelling numerous appointments that we had. Once at home Mum and I both sat down and cried together, Mum takes such good care of me and thinks it is so unfair that I have to face so many hurdles. I just want to have a life, I am trying to move on and make the most of each and every day but this is like Mount Everest appearing in my path and I don't know how I am going to climb it.
In the afternoon we had running training, it was a lovely Spring day with just a gentle soothing breeze in the air, so Mum and I went for a walk around the oval in my wheelchair, the fresh air really clears your head, if I can't go over this mountain then I will go around it before attempting to climb it. We saw a family of rabbits nibbling the lovely, thick green grass, normally as you approach them they hop away nervously but today one rabbit just sat there nibbling, we were so close before it hopped off into the safety of its burrow.
I will keep you all updated on my progress in Sydney but now I have to go and pack my suitcase ready for our departure tomorrow morning.
'Sometimes we let fear stand between us and our rainbow but if we have courage, our hopes and dreams will lead us to our pot of gold in life'
Wednesday, October 20, 2010
SCHOOL AND BLOOD TEST
19th and 20th October 2010
The weather in Canberra is definitely improving which is wonderful because at this time of year we should all be rejoicing with warmer weather and longer daylight hours. Yet again I had experienced a dreadful night sleep plagued with pain especially in my right heel, you know the kind of pain that no matter where you place your leg it seems to get worse rather than better.
This week is my two day week at school, I had Science first which we did some research on our Science Assessment in the Library. I did some reading on the Moon and how it has different phases, it was really interesting, I will now look at the Moon differently when it appears glimmering mysteriously in the evening sky. After Science it was time for English, we were working on a worksheet from the day before on Cathy Freeman, one of the activities was to find a page reference for a sentence that was written, I think doing this sort of activity really assists with research skills. We then watched a You Tube documentary on camera angles in a motion picture, there are so many different ones compared to still photographs that we learnt about earlier in the year. After English it was time for Maths, we are learning angles, this is probably the most difficult and challenging area of maths that I have come across this year, I will have to do extra practise so that I can really understand it with confidence.
When we came home at recess I was really exhausted, I needed to have a rest, afterwards I read Pocahontas, played Upwords and then we had to take Nalani to the doctors to have her wart scraped off and then refrozen, it was good news for her because it looks like there are no roots remaining so it should now disappear.
In the afternoon I had pain and a stinging sensation in my left palm it was dreadful and nothing I tried would make it disappear. Jarrett had running training and even though the weather was quite pleasant, I did not feel up to going for a walk around the oval in my wheelchair because the surface is a little uneven and the bumps would make my ankle and heel painful, I already had enough pain and did not want to have to have more to cope with, so I did some activities in a Christmas Activity Book.
I rode the exercise bike again at night time after dinner but not too close to bedtime, I was only able to ride for ten minutes because my right knee began to stiffen and click as I was pedalling. I have not had too many problems with my right knee lately, most of my problems have been with my heel and ankle. When I got off the bike my knee was all hot and swollen and I was unable to bend it straight, Mum had to massage it so that I could straighten it out properly.
During the night and early hours of this morning I woke with pain in my right hand, the pain then was accompanied by pins and needles which actually felt like they were vibrating all along my arm, I had nausea and then when I was sitting after breakfast something occurred, I had another seizure. The last thing I remember was having a little pain on the left side of my head and then my right arm had dropped again and was so heavy and painful, then I felt like I needed to sleep, it was like I had competed in the Commonwealth Games Marathon and I had no energy left. Mum put a sling on it to elevate and support it which always helps. I could not move it at all but by lunch time today it has regained a little strength but remains painful and very weak.
I had to have my blood tests done that my paediatrician had requested on Monday when I visited him, blood tests are simple, I sat there calm and smiling as the pathologist put the needle into my vein, I even watched the blood flow from my vein into the vials that it is collected in, some people are unable to watch as it makes them feel ill. Usually the veins in my right arm are the best ones to take blood from they are larger for some reason but today they had to use my left arm because of my right one being in the sling and paralysed. It was all over before I knew it and Mum applied pressure while the vials were sorted out then I was given a Tweety Band aid to go over the insertion spot.
The sun was shinning from our brilliant blue skies in Canberra today, happiness filled my heart even though I was in pain and still felt 'strange' from the seizure. I think of the sun as God smiling down on the Earth, in awe of all the wonders of nature and his love for all the people.
It is difficult for me to type today because of my hands so I have kept it short and sweet, may love and hope fill your hearts when you look at the beautiful sunshine shining down on your life.
The weather in Canberra is definitely improving which is wonderful because at this time of year we should all be rejoicing with warmer weather and longer daylight hours. Yet again I had experienced a dreadful night sleep plagued with pain especially in my right heel, you know the kind of pain that no matter where you place your leg it seems to get worse rather than better.
This week is my two day week at school, I had Science first which we did some research on our Science Assessment in the Library. I did some reading on the Moon and how it has different phases, it was really interesting, I will now look at the Moon differently when it appears glimmering mysteriously in the evening sky. After Science it was time for English, we were working on a worksheet from the day before on Cathy Freeman, one of the activities was to find a page reference for a sentence that was written, I think doing this sort of activity really assists with research skills. We then watched a You Tube documentary on camera angles in a motion picture, there are so many different ones compared to still photographs that we learnt about earlier in the year. After English it was time for Maths, we are learning angles, this is probably the most difficult and challenging area of maths that I have come across this year, I will have to do extra practise so that I can really understand it with confidence.
When we came home at recess I was really exhausted, I needed to have a rest, afterwards I read Pocahontas, played Upwords and then we had to take Nalani to the doctors to have her wart scraped off and then refrozen, it was good news for her because it looks like there are no roots remaining so it should now disappear.
In the afternoon I had pain and a stinging sensation in my left palm it was dreadful and nothing I tried would make it disappear. Jarrett had running training and even though the weather was quite pleasant, I did not feel up to going for a walk around the oval in my wheelchair because the surface is a little uneven and the bumps would make my ankle and heel painful, I already had enough pain and did not want to have to have more to cope with, so I did some activities in a Christmas Activity Book.
I rode the exercise bike again at night time after dinner but not too close to bedtime, I was only able to ride for ten minutes because my right knee began to stiffen and click as I was pedalling. I have not had too many problems with my right knee lately, most of my problems have been with my heel and ankle. When I got off the bike my knee was all hot and swollen and I was unable to bend it straight, Mum had to massage it so that I could straighten it out properly.
During the night and early hours of this morning I woke with pain in my right hand, the pain then was accompanied by pins and needles which actually felt like they were vibrating all along my arm, I had nausea and then when I was sitting after breakfast something occurred, I had another seizure. The last thing I remember was having a little pain on the left side of my head and then my right arm had dropped again and was so heavy and painful, then I felt like I needed to sleep, it was like I had competed in the Commonwealth Games Marathon and I had no energy left. Mum put a sling on it to elevate and support it which always helps. I could not move it at all but by lunch time today it has regained a little strength but remains painful and very weak.
I had to have my blood tests done that my paediatrician had requested on Monday when I visited him, blood tests are simple, I sat there calm and smiling as the pathologist put the needle into my vein, I even watched the blood flow from my vein into the vials that it is collected in, some people are unable to watch as it makes them feel ill. Usually the veins in my right arm are the best ones to take blood from they are larger for some reason but today they had to use my left arm because of my right one being in the sling and paralysed. It was all over before I knew it and Mum applied pressure while the vials were sorted out then I was given a Tweety Band aid to go over the insertion spot.
The sun was shinning from our brilliant blue skies in Canberra today, happiness filled my heart even though I was in pain and still felt 'strange' from the seizure. I think of the sun as God smiling down on the Earth, in awe of all the wonders of nature and his love for all the people.
It is difficult for me to type today because of my hands so I have kept it short and sweet, may love and hope fill your hearts when you look at the beautiful sunshine shining down on your life.
Monday, October 18, 2010
STILL COLD ON SUNDAY AND PAEDIATRICIAN APPOINTMENT MONDAY
17th and 18th October 2010
On Sunday the weather still remained wintry with a wind that chilled you to the bone, yet if you found a sheltered corner of sunlight the glorious warmth provided a comfort, like a large, soft, fluffy blanket wrapped around you.
Jarrett had his running training, Sunday's are always a long run from the AIS, he ran for an hour and pulled up strong which was terrific considering he had run 3.8km in total on Saturday night. We went for a walk around the AIS and were lucky enough that most of the paths we took were sheltered from the wind.
I came home and read, then played Upwords, as I was sitting playing Upwords, I had dreadful pins and needles travelling through my heel and ankle which was followed by pain which felt like extremely sharp needles were been dug into my skin and through to my bones, it virtually took my breath away. I needed to sit with my feet up, heat around my ankle and heel and panadol to help ease the pain.
Luckily by the afternoon it was feeling a little better because we were going to a working bee to help make ribbons for Brain Tumour Awareness Week for our politicians to wear on their last sitting day in Parliament. We cut, pinned and dipped the tips of the ribbons in glimmering silver glitter. The ribbons are grey, when we speak of our brains we often hear them referred to as grey matter. By the end of the session we ended up looking like fairies all sparkling magically from the glitter. We also discussed the Train for the Brain Fun Run and Walk which is on 6th November, it is going to be a spectacular day and Sarah is really looking forward to pushing me. The Train for the Brain Fun Run is being held at 10am at Lake Burley-Griffin. The two primary goals of this event are to raise awareness in the community about brain tumours and secondly to raise funds for Dr Charles Teo’s charity Cure for Life Foundation. If you are interested in being part of such a special day you can register at http://trainforthebrain.yolasite.com/ or from 8am on the day at the venue.
I was really fatigued and my hands were both inflamed and painful but helping for such a great cause was worth the pain. After a shower and rest I felt more refreshed and decided after dinner to ride the exercise bike, even though it is not a weight bearing activity it is helping to build the muscles in my legs back up which have all withered away terribly from my treatment and not been mobile. I rode whilst watching Junior MasterChef and ended up riding for twenty minutes, at the completion of my session I found that I felt a little dizzy as well as my ankle was really swollen, I did not realise when I was riding, it was probably because of the distraction of watching television.
Snuggling up in bed with a hot water bottle and my bears comforted me and I just wanted to have a good night sleep. I can't understand why I must be plagued with pain and stiffness throughout the night, again I did not sleep well, when I don't sleep well neither does Mum, I wish that both of us could just be blessed with one night that we sleep without disturbances.
The sun greeted us this morning but it was deceiving because the wind had a chill factor that was like being locked in a huge meat freezer. I did not have school today which I was relieved about because my weekend craft activities had left me with weakened hands especially my right one. I did some reading while Mum did some housework and then I worked on my Raising Awareness Integrated Studies Assessment Task, as I typed up my research notes I was amazed at the statistics about Brain Tumours. Did you know that three hundred children in Australia each year are diagnosed with a brain tumour, men are more likely to have a primary tumour than women and that brain tumour research receives only a minimal amount of funding from the Government compared to other types of cancer. All the more reason for me to remain passionate about raising awareness and funds for Brain Tumours. Once I present my information and action plan at school I will write more that I have found out and what I hope many Australians can do to raise awareness.
Even though I enjoyed working on my project, it really fatigued me, so I needed to have a rest, I fell asleep for half and hour. On waking I played Upwords, Disney Princess Memory Game and did some physiotherapy for my left wrist by working with playdoh.
In the afternoon I had a splendiferous visit from Anna, you may remember me posting a picture on my Blog of my book visiting Greece, well Anna is the wonderful person who took it over there. She shared my story with all her Greek relatives and one of her relatives Popy sent me a beautiful message on a digital postcard of Greece she said "We hope that every child around the globe takes courage and strength from you. I was really moved after reading your book and I assure you that all my Greek students will learn your story and how special you are". I was so touched by the message and it made me realise how important to everyone it is to share my journey and to continue sharing it.
It was then time to go to my appointment with my Paediatrician, he is a very caring and understanding doctor, he did a thorough examination of me. I have put on a little weight and now weigh 29.3kg, but my height has not changed any and usually for a person my age you are going through a growth spurt. The radiotherapy can cause this to occur and that is why the endocrinology team are looking at the possibility of me having to have daily growth hormone injections. My blood pressure was good, my pulse was a little low and my skin was cold to touch, I had no ankle jerks when they were tested. We had written a detailed description of what occurs when I have had seizures and on what dates, he is going to monitor them and if they become more frequent I will require medication however it does have side effects so he does not want to rush into giving me that particular medication. I have to have blood tests done on Wednesday and he will then contact us once he receives those results, more tests will be organised based on those results. He is contacting my Sydney team tomorrow and he wants to monitor me more closely, I now need to see him every month.
I am going to ride the exercise bike now, when I am doing that it helps me to feel that little bit free and normal. My heel and ankle are deplorably painful but if I can just get my muscles that bit stronger each day I will be able to take small steps, I think I will set myself a goal of being able to walk with my rollator two laps of the kitchen and family room by Christmas.
I found a beautiful Irish Blessing I would love to share with you all, thank you for always supporting me, I am truly blessed.
On Sunday the weather still remained wintry with a wind that chilled you to the bone, yet if you found a sheltered corner of sunlight the glorious warmth provided a comfort, like a large, soft, fluffy blanket wrapped around you.
Jarrett had his running training, Sunday's are always a long run from the AIS, he ran for an hour and pulled up strong which was terrific considering he had run 3.8km in total on Saturday night. We went for a walk around the AIS and were lucky enough that most of the paths we took were sheltered from the wind.
I came home and read, then played Upwords, as I was sitting playing Upwords, I had dreadful pins and needles travelling through my heel and ankle which was followed by pain which felt like extremely sharp needles were been dug into my skin and through to my bones, it virtually took my breath away. I needed to sit with my feet up, heat around my ankle and heel and panadol to help ease the pain.
Luckily by the afternoon it was feeling a little better because we were going to a working bee to help make ribbons for Brain Tumour Awareness Week for our politicians to wear on their last sitting day in Parliament. We cut, pinned and dipped the tips of the ribbons in glimmering silver glitter. The ribbons are grey, when we speak of our brains we often hear them referred to as grey matter. By the end of the session we ended up looking like fairies all sparkling magically from the glitter. We also discussed the Train for the Brain Fun Run and Walk which is on 6th November, it is going to be a spectacular day and Sarah is really looking forward to pushing me. The Train for the Brain Fun Run is being held at 10am at Lake Burley-Griffin. The two primary goals of this event are to raise awareness in the community about brain tumours and secondly to raise funds for Dr Charles Teo’s charity Cure for Life Foundation. If you are interested in being part of such a special day you can register at http://trainforthebrain.yolasite.com/ or from 8am on the day at the venue.
I was really fatigued and my hands were both inflamed and painful but helping for such a great cause was worth the pain. After a shower and rest I felt more refreshed and decided after dinner to ride the exercise bike, even though it is not a weight bearing activity it is helping to build the muscles in my legs back up which have all withered away terribly from my treatment and not been mobile. I rode whilst watching Junior MasterChef and ended up riding for twenty minutes, at the completion of my session I found that I felt a little dizzy as well as my ankle was really swollen, I did not realise when I was riding, it was probably because of the distraction of watching television.
Snuggling up in bed with a hot water bottle and my bears comforted me and I just wanted to have a good night sleep. I can't understand why I must be plagued with pain and stiffness throughout the night, again I did not sleep well, when I don't sleep well neither does Mum, I wish that both of us could just be blessed with one night that we sleep without disturbances.
The sun greeted us this morning but it was deceiving because the wind had a chill factor that was like being locked in a huge meat freezer. I did not have school today which I was relieved about because my weekend craft activities had left me with weakened hands especially my right one. I did some reading while Mum did some housework and then I worked on my Raising Awareness Integrated Studies Assessment Task, as I typed up my research notes I was amazed at the statistics about Brain Tumours. Did you know that three hundred children in Australia each year are diagnosed with a brain tumour, men are more likely to have a primary tumour than women and that brain tumour research receives only a minimal amount of funding from the Government compared to other types of cancer. All the more reason for me to remain passionate about raising awareness and funds for Brain Tumours. Once I present my information and action plan at school I will write more that I have found out and what I hope many Australians can do to raise awareness.
Even though I enjoyed working on my project, it really fatigued me, so I needed to have a rest, I fell asleep for half and hour. On waking I played Upwords, Disney Princess Memory Game and did some physiotherapy for my left wrist by working with playdoh.
In the afternoon I had a splendiferous visit from Anna, you may remember me posting a picture on my Blog of my book visiting Greece, well Anna is the wonderful person who took it over there. She shared my story with all her Greek relatives and one of her relatives Popy sent me a beautiful message on a digital postcard of Greece she said "We hope that every child around the globe takes courage and strength from you. I was really moved after reading your book and I assure you that all my Greek students will learn your story and how special you are". I was so touched by the message and it made me realise how important to everyone it is to share my journey and to continue sharing it.
It was then time to go to my appointment with my Paediatrician, he is a very caring and understanding doctor, he did a thorough examination of me. I have put on a little weight and now weigh 29.3kg, but my height has not changed any and usually for a person my age you are going through a growth spurt. The radiotherapy can cause this to occur and that is why the endocrinology team are looking at the possibility of me having to have daily growth hormone injections. My blood pressure was good, my pulse was a little low and my skin was cold to touch, I had no ankle jerks when they were tested. We had written a detailed description of what occurs when I have had seizures and on what dates, he is going to monitor them and if they become more frequent I will require medication however it does have side effects so he does not want to rush into giving me that particular medication. I have to have blood tests done on Wednesday and he will then contact us once he receives those results, more tests will be organised based on those results. He is contacting my Sydney team tomorrow and he wants to monitor me more closely, I now need to see him every month.
I am going to ride the exercise bike now, when I am doing that it helps me to feel that little bit free and normal. My heel and ankle are deplorably painful but if I can just get my muscles that bit stronger each day I will be able to take small steps, I think I will set myself a goal of being able to walk with my rollator two laps of the kitchen and family room by Christmas.
I found a beautiful Irish Blessing I would love to share with you all, thank you for always supporting me, I am truly blessed.
'May the wings of the butterfly kiss the sun
And find your shoulder to light on,
To bring you luck, happiness and riches
Today, tomorrow and beyond'.
Sunday, October 17, 2010
A WET FRIDAY AND SNOW ON SATURDAY
15th and 16th October 2010
We had a barrage of continuous rain falling steadily overnight and the grey, thick, heavy clouds appeared to be ready to dispose of their abundant load throughout Friday. As anyone with any sort of bone or muscles complaints knows when it is damp and cool the condition becomes worse and my body felt just like the dogs breakfast a total mess. I ached, it hurt to move and the pain caused me to feel miserable, yet I knew I had to go to school.
The rain was accompanied by arctic winds that whipped and swirled around my umbrella that I was attempting to keep myself dry with on our journey to school. The wheelchair went through deep puddles of water along the footpath and it was a day that you could easily have just given up and stayed in the warmth of home.
We entered the classroom a little wet and cold but we were able to warm up as the classroom was much warmer than outside. We had Integrated Studies first and were doing a Quiz on Government, we were put into groups and Mum was told that she could not assist our group. We did extremely well and ended up coming second overall. I realised afterwards that I should have had the group use my FM Transmitter so that I could hear what they were discussing more clearly but it does take just a little time to set up and the questions had already started to be asked.
After the Quiz we had double Science, our lesson was in the Library and the Computer Room because we were given our assessment task which is also due in Week 4, the same as our Integrated Studies one on Raising Awareness. We were able to choose which topic we wanted to do our assessment on and then researched it in books and on the computers. A really strange thing happened to the computer and three others around me when I was using one, it totally blanked out and so did the other three, no one else's in the room did, it was really weird and the teacher had no explanation for it either.
I was so pleased it was time to leave school and go home because it was too wet and cold, my pain was becoming worse and I just wanted to be able to warm myself up. The wind had increased and I could not find the best way to hold my umbrella to prevent myself from getting wet, I ended up with extremely wet legs and feet, I had to be dried off and changed when we arrived home. A lovely hot chocolate warmed my inside up and we turned the heating on to warm our body on the outside.
I did some reading, had a rest , took photographs of my Christmas Bear for a collage and dressed my Barbie dolls. I was so pleased to be warm and dry, unfortunately my pain did not ease much during the day even with the heating on, heat packs and pain killers, I guess sometimes when the weather is the culprit there is not too much you can do, you have to just grin and bear it which I am quite expert at doing.
My night was plagued with pain and discomfort, I woke several times throughout the night and early hours of the morning, then I slept in until 8.30am which is unusual for me. I felt a little nauseous upon waking probably from lack of sleep. Mum came and got me and told me she had something special to show me, she took me to our family room window and there outside were soft, delicate flakes of snow falling from the sky, some had settled under the trees in our back garden but most were melting once they touched the ground. It was a Winter wonderland and I was totally in awe of what I saw, snow falling is so exquisite. The weather was freezing so I did some reading, learnt Baa Baa Black Sheep on guitar and typed a Christmas list.
Fortunately as the day progressed my nausea improved, I wish my pain would do the same, but because it was so cold my pain had remained fairly intense throughout the entire day. Jarrett had Interclub which is the Summer Competition of Athletics, it was on in the evening, we all had to rug up as if we were going to the snow; gloves, beanies, scarfs and jackets. Jarrett ran in the 800m first, he was in the second heat, it was a curved line start, the gun went off, the runners took off but Jarrett slipped on the starting line and was coming last, however around the first bend he had fired and took the lead which he held until the finish to come first. After I saw him fall I willed him to do well, I was even almost running with him, I was moving my legs up and down in my seat in the Grandstand. While Jarrett was running Nalani was working as an Official, firstly she was on Shot put doing the recording and then on Javelin which she collected the Javelins to take back to the competitors. Jarrett ran the last event of the evening which was the 3000m that is seven laps of the track and they start at the 200m mark. This time Jarrett had a good start and was running up with the elite runners in the first few laps, he ran a terrific race to be the first Junior runner across the line and he had no asthma or vocal chord problems although he said he had to use one of his breathing techniques half way through and it worked.
We came home for a hot chocolate and to snuggle into our lovely warm beds, it had been cold at the AIS but we were sheltered from the winds in the Grandstand so it was not as harsh as it was if you were out on the track. My feet had got a little cold though even with thick socks and enclosed shoes and my ankle and heel throbbed in bed, so Mum gave me a heat pack which made a huge difference and I eventually fell asleep.
'Never give up, keep racing your race because those that love you will always be there gently lifting you and pushing you along'
We had a barrage of continuous rain falling steadily overnight and the grey, thick, heavy clouds appeared to be ready to dispose of their abundant load throughout Friday. As anyone with any sort of bone or muscles complaints knows when it is damp and cool the condition becomes worse and my body felt just like the dogs breakfast a total mess. I ached, it hurt to move and the pain caused me to feel miserable, yet I knew I had to go to school.
The rain was accompanied by arctic winds that whipped and swirled around my umbrella that I was attempting to keep myself dry with on our journey to school. The wheelchair went through deep puddles of water along the footpath and it was a day that you could easily have just given up and stayed in the warmth of home.
We entered the classroom a little wet and cold but we were able to warm up as the classroom was much warmer than outside. We had Integrated Studies first and were doing a Quiz on Government, we were put into groups and Mum was told that she could not assist our group. We did extremely well and ended up coming second overall. I realised afterwards that I should have had the group use my FM Transmitter so that I could hear what they were discussing more clearly but it does take just a little time to set up and the questions had already started to be asked.
After the Quiz we had double Science, our lesson was in the Library and the Computer Room because we were given our assessment task which is also due in Week 4, the same as our Integrated Studies one on Raising Awareness. We were able to choose which topic we wanted to do our assessment on and then researched it in books and on the computers. A really strange thing happened to the computer and three others around me when I was using one, it totally blanked out and so did the other three, no one else's in the room did, it was really weird and the teacher had no explanation for it either.
I was so pleased it was time to leave school and go home because it was too wet and cold, my pain was becoming worse and I just wanted to be able to warm myself up. The wind had increased and I could not find the best way to hold my umbrella to prevent myself from getting wet, I ended up with extremely wet legs and feet, I had to be dried off and changed when we arrived home. A lovely hot chocolate warmed my inside up and we turned the heating on to warm our body on the outside.
I did some reading, had a rest , took photographs of my Christmas Bear for a collage and dressed my Barbie dolls. I was so pleased to be warm and dry, unfortunately my pain did not ease much during the day even with the heating on, heat packs and pain killers, I guess sometimes when the weather is the culprit there is not too much you can do, you have to just grin and bear it which I am quite expert at doing.
My night was plagued with pain and discomfort, I woke several times throughout the night and early hours of the morning, then I slept in until 8.30am which is unusual for me. I felt a little nauseous upon waking probably from lack of sleep. Mum came and got me and told me she had something special to show me, she took me to our family room window and there outside were soft, delicate flakes of snow falling from the sky, some had settled under the trees in our back garden but most were melting once they touched the ground. It was a Winter wonderland and I was totally in awe of what I saw, snow falling is so exquisite. The weather was freezing so I did some reading, learnt Baa Baa Black Sheep on guitar and typed a Christmas list.
Fortunately as the day progressed my nausea improved, I wish my pain would do the same, but because it was so cold my pain had remained fairly intense throughout the entire day. Jarrett had Interclub which is the Summer Competition of Athletics, it was on in the evening, we all had to rug up as if we were going to the snow; gloves, beanies, scarfs and jackets. Jarrett ran in the 800m first, he was in the second heat, it was a curved line start, the gun went off, the runners took off but Jarrett slipped on the starting line and was coming last, however around the first bend he had fired and took the lead which he held until the finish to come first. After I saw him fall I willed him to do well, I was even almost running with him, I was moving my legs up and down in my seat in the Grandstand. While Jarrett was running Nalani was working as an Official, firstly she was on Shot put doing the recording and then on Javelin which she collected the Javelins to take back to the competitors. Jarrett ran the last event of the evening which was the 3000m that is seven laps of the track and they start at the 200m mark. This time Jarrett had a good start and was running up with the elite runners in the first few laps, he ran a terrific race to be the first Junior runner across the line and he had no asthma or vocal chord problems although he said he had to use one of his breathing techniques half way through and it worked.
We came home for a hot chocolate and to snuggle into our lovely warm beds, it had been cold at the AIS but we were sheltered from the winds in the Grandstand so it was not as harsh as it was if you were out on the track. My feet had got a little cold though even with thick socks and enclosed shoes and my ankle and heel throbbed in bed, so Mum gave me a heat pack which made a huge difference and I eventually fell asleep.
'Never give up, keep racing your race because those that love you will always be there gently lifting you and pushing you along'
Thursday, October 14, 2010
ELECTIVES, ACT CROSS COUNTRY CLUB PRESENTATION AND TINKERBELLE'S 1ST BIRTHDAY
During the night the rain came tumbling down, the heavy drops were battering rapidly against the windows and the ground was saturated. The damp weather made my right ankle, knee and heel pound with pain and my left wrist became stiff and painful, hurting even to bend slightly.
The heavy rain continued into the morning so I had to arm myself with my umbrella before venturing outside to go to school. Even with an umbrella my legs and feet still got wet, which made my heel and ankle ache more severely. Once in the warmth of my dry classroom I began to dry off and felt a little more comfortable. We spent the first half hour at school discussing our Integrated Studies Task and what the different possibilities were for topics.
We headed into French with the rain still bucketing down in torrents, this Term we are learning French directions ready for our assessment which will be using a map to give written instructions in French for a person to find certain locations. I am actually finding the vocabulary used for directions much more simple than for food. This is a short Term so we have a lot to fit into a short period of time.
From French I had to put my umbrella up to head across the bridge into Senior School where my Textiles classroom is. We finished off our keyring weaving that we began before school holidays, I was really pleased with how mine turned out. I then started on a different type of weaving, it was one using a card with four holes, one in each corner, I had to thread a piece of wool through each hole, then I had to have the card in the middle and tie a knot at either end of the four pieces of wool. I then cut a piece of wool to weave through, you went through the space then you turned the card on a new axis and weaved the wool through again, you kept repeating this, what it makes is a friendship bracelet, I have not quite finished yet but it won't take long next lesson to complete it. Then we are going to begin knitting, I can hardly wait to do this because Mum has already taught me to knit and I have become rather expert at it, although if I have problems with my hands then I am unable to knit.
The rain had eased slightly as we signed off for the morning and began our walk home, Mum even commented that it looked as if it was pouring, then suddenly a deluge of rain began to fall and we were caught in it, fortunately we were almost home when this happened, my feet and legs were wet and had to be dried and Mum who can't carry an umbrella when pushing my wheelchair was soaked to the bone.
After drying off we had a hot cup of milo which warmed us up from the inside, I needed to have a rest, I was feeling fatigued but my left wrist was also swollen and painful, I enjoy my textiles and it was becoming painful but I did not want to say anything, I think I should have because the pain had begun to shoot up to my elbow and then it was difficult to bend it.
I did my physiotherapy exercises but did not ride the exercise bike because my ankle and heel were too inflamed and painful, I did some reading to myself and Mum and I had a game of Upwords.
We heard from Sydney and had to contact my paediatrician and I have an appointment late on Monday afternoon, he will then do a thorough examination and organise tests that I need to have done, after that the results will be communicated to my Sydney Team.
At night we had the ACT Cross Country Club Presentation Night, it was extremely exciting because Jarrett won a medal for being the U16 Male Champion as well as a Goblet and large Trophy for being the Junior Male Runner of the Year 2010. I was so proud sitting there seeing Jarrett receive his awards, he truly deserves them because he is so dedicated to the sport and his training. I think receiving the awards will also boost his confidence after his problems with his asthma and diagnosis of vocal chord dysfunction. Jarrett is always so humble when he receives awards and he told me that the awards that he won were for me also because I inspire him in his running.
I was extremely tired as we drove home in the rain and I fell asleep in the back seat of the car, Mum gently lifted me out but I woke up. I had a warm cup of milo and went to bed hoping for a decent night sleep. I would love to announce that I had a marvellous night sleep but unfortunately yet again I had another disturbed night again with pain and joint stiffness, one day, I will eventually have an uninterrupted night, I can only dream that will be soon.
Today was Tinkerbelle's first Birthday, I had made her a rainbow pom-pom ball and when I gave it to her she played with it for ages, picking it up in her little paws and throwing it, pouncing on it and just lying with it and patting it ever so often from paw to paw. Tinkerbelle has comforted me, loved me unconditionally and made me laugh often, she was a wonderful gift and I love her so much.
I worked on my Integrated Studies Task today, doing up a mind map of what I would like to include in my presentation. I am so excited because when I do my presentation it will coincide with International Brain Tumour Awareness Week, so I am hoping to actually encourage people to take part in at least one of the activities that are organised to raise awareness.
Working on my project tired me, so I had a rest before answering some emails and watching Disney Beauty and the Beast which is my favourite Disney Princess Movie because Belle is such a strong, unique and caring person, she overlooked the ugliness of the Beast to see his true inner beauty on the inside. So many people are wrapped up in what they look like on the outside and forget that true beauty comes from within you and makes you more beautiful on the outside. I have scars, no hair in spots and a different shaped skull now, I don't care, because it is not what is on the outside, I am warm hearted and my inner glow is what makes me special.
We went to running training and Mum finished reading the Cathy Freeman book 'Born to Run' to me. She spent seventeen years waiting for her dream to come true of winning a Gold Medal at an Olympics, she achieved that goal through determination and dedication despite her background.
Tonight I rode the exercise bike for fifteen minutes but my ankle and heel were in agony so I had to stop. I tried walking a little but found my heel had the most terrible tingling in it which made my foot jump up each time I attempted to put any pressure on it.
Tomorrow I have school again, I have Integrated Studies and double Science, it is also supposed to rain again, there are reports that we are to have 50mm of rain overnight with the rain continuing tomorrow, our dams are now at their highest levels in eight years.
'Believe in yourself and all you want to be, see your challenges and changes as something that will help you reach your dreams'
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