25th to 31st December 2010
I can't believe that another year is almost over, it has been a year filled with many highlights like going back to school, doing the Cross Country in my wheelchair and walking over the finish line, getting a hearing aid so I could hear more clearly, Rhiannon organising my rollator for me so I can be more mobile, getting to meet Benji Marshall at Canberra Stadium, win the toss for the West Tigers and then present the trophy to Benji because they were victorious, receiving a telephone call from the totally awesome Short Stack - Shaun, Bradie and Andy and their tour member Liam when they were in Canberra for a concert, meeting some of the most truly inspirational and incredible people: Paul, Tess, Gavin, Ben, Carlos, Sarah, Stuart, Ally, Carol, Cate, Denis, Susan, Tracey, Christine, Tass - my number one Salesman and many others who made such a difference to my life
The most extraordinary event was on the 21st of April when I was granted my Starlight Wish and my book 'You Have To Go Through A Storm To Get To A Rainbow' was launched, that was such a magical day that I will never ever forget. The funds that my book has raised as well as other activities that I and others have done in the community will hopefully help make a difference to other children's lives who are facing or will face a journey like mine. My life long dream is to continue making a difference in what ever way I possibly can through raising funds as well as awareness, it is so important and if one person starts then perhaps many more will join and one day a cure can be found for future generations.
I hope everyone had a Merry Christmas filled with lots of joy, my Christmas was phenomenal being around my family. I received many wonderful gifts and enjoyed seeing the happiness and love that giving and receiving bought on the day. All the food I cooked tasted simply delicious, it was sad when we began pulling apart the meringue tower because it looked so beautiful.
Having my Nana and Pop here has been magnificent, because of Nalani's knee which is still recovering we are unable to go out much or do any sporty activities we have played some PlayStation games, in one Buzz game it was extremely close between Pop, Nalani and I, it was the last question and Pop got it right and won.
I will be having my MRI here in Canberra sometime in January, then I have to go to Sydney on the 1st of February I am hoping that I will have positive results. I have physiotherapy next Friday which I am looking forward to showing Rhiannon what I can do now.
As one year draws to an end and another is about to begin lets all remember not to concentrate on the negatives we encounter in our lives but to delight in any positives, big or small and our year will be more memorable.
Happy New Year everyone, thank you for following my Journey through the good times as well as the difficult times.
Friday, December 31, 2010
Friday, December 24, 2010
CHRISTMAS EVE
Christmas Eve is here, I hope that everyone has been nice so that Santa will bring you a special treat, it is also a time to reflect about the birth of a very precious baby, the baby Jesus. I have my stocking ready to put out, fresh carrots for the reindeer and a delicious treat for Santa.
This week has been a busy one it began with me using my rollator at the AIS while Jarrett was doing track work and I was able to walk from the two hundred metre start to the water steeple jump, a distance of about forty metres and then back.
In the afternoon I had a splendiferous game of Upwords with Gloria and Rosy, they had never played it before and we had a fabulous time playing it, it really is a fantastic game. I wonder if any of you will get it in your Christmas Stockings.
I have been dedicatedly working on my physiotherapy circuit of exercises that Rhiannon gave me to do and feel a little stronger every single day, that puts a humungous smile on my face and makes me feel so proud of myself.
On Monday I saw my Paediatrician and he was so impressed with my progress with my mobility, he has taken me off the phosphate supplements as my blood test showed an improvement in my levels, he is organising my MRI to be done prior to an oncology review and lumbar puncture in Sydney on 1st February. An issue that has to be watched is my height as I have not grown as I should be and that is a side effect of the high doses of radiotherapy that I had to have during my treatment, my paediatrician will continue to monitor this.
We have had quite a few visitors this week which reminds you that Christmas time is a time when people take the time to see those that they care about. I also sang some Christmas Carols as a gift to my family and Jarrett was my supporting act with his terrific version of We Wish You a Merry Christmas.
Nalani's knee is looking much better than it first did and she is working hard on her physiotherapy exercises hoping that in the New Year she will be able to bend her knee rather than having it straight all the time and so limited in what she can do.
Nana and Pop arrived from Queensland, Canberra is going to be much drier than Queensland for Christmas so I am so glad that they made it here safely. Today we spent the day cooking lots of scrumptious treats for Christmas. We made Coconut Ice, Vanilla Kisses, Mini Chocolate Biscuit Puddings, Dips, Chocolate Cake Pops, Apple Turnovers and my masterpiece was a Christmas Tree Meringue Tower which I have put a photograph of on this entry. I was exhausted by the end of our cooking day, but I had so much fun whilst doing it, everyone joined in and helped. Now all that is left is to eat it all over the next few days, I can hardly wait to taste it all.
Well, Christmas Eve is here and I have had such a huge day, it is now time for me to head off to bed, I hope you all have a very joyous and blessed Christmas.
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Saturday, December 18, 2010
GETTING READY FOR CHRISTMAS
11th to 17th December 2010
With Nalani off her feet and me still recovering from my cough we have had a fairly quiet week at home playing board games and watching numerous movies. Our weather has been far more pleasant than the wild rain and winds of previous weeks.
On Saturday Dad and I bought some new plants for my fairy garden, instead of being overgrown hiding my lovely fairies they are now visible and sparkling in the sunlight beside my delicate new flowers. I moved one of my solar lights to a higher level so that my garden can be seen more clearly at night time. Dad put clear estapol on my wishing well to protect it from the weather and it too sparkles brilliantly and looks ever so magical.
I remain on my phosphate, which I have to take two every day, I had a blood test on Thursday and see my paediatrician on Monday, he will review my results and inform me whether I have to continue taking them. I am excited about seeing him so I can show him how clever I have become at using my rollator to regain mobility. I am becoming quite a speed demon around the house using my rollator.
Tinkerbelle is extremely amused and entertained by the Christmas decorations we have put up, she sits on our entertainment unit and plays with the various decorations we have placed on the Christmas tree. We have Christmas lights in the windows and she loves to watch them change colour. There is a little gift under the tree for her and the other cats, I think she is going to love helping open it on Christmas day.
Nalani's knee continues to heal, she is not very mobile, I am more mobile than she is so that makes me feel terrific. She sees her surgeon on Monday also and he is going to remove some of her bandaging and readjust her brace so that she will be able to bend her knee a little, that will make a difference for her, having your knee straight all the time would be exceptionally difficult, when Nalani walks at the moment she walks like a chicken. We have all being taking good care of her, it will be fantastic though when she will be able to be more independent.
My cough has taken a while to improve, I still have it and I am taking my Bactrim to help it, it is more of a broken cough now which is better because before when I was coughing it felt like my chest was going to break, especially my ribs which hurt for a few days.
I still have my tinnitus which is the ringing in my ears, having had it for so long now, I forget what it is like to not have it. At night to help me go to sleep I listen to music, it blocks out the ringing a little because it is close to Christmas I have been listening to a Christmas CD, my favourite Christmas song is Silent Night. Mum used to sing it to me when I was a baby and when I was older to help me sleep, I think it is a beautiful song. I also love Santa Claus is coming to town, it is one of those songs that once you hear it, it gets stuck in your head.
With Christmas so close I have been looking through our cook books and have planned what I am going to cook this year, I am going to make coconut ice, apple turnovers, chocolate cake pops, vanilla kisses and my masterpiece will be a meringue tower tree.
Someone on my Blog asked me about making a donation for Christmas to the Brain Tumour Fund, it is The Sydney Children's Hospital Foundation Brain Tumour Fund and the address is The Sydney Childrens Hopsital Foundation Locked Bag 5 Randwick NSW 2031 and you make it attention to Tara Donnelly. This is where the money that I have been raising from my book, money tins, walk-a-thons, garage sales and paintings goes to, it goes towards research and rehabilitation programs for paediatric Brain Tumours. Another fund is the one that Dr Teo set up and that is the one that the Train for the Brain Fun Run and Walk raised money for and that is the Cure 4 Life Foundation that money also goes towards research for Brain Tumours.
I had physiotherapy with the wonderful Rhiannon on Friday and she is very impressed with my mobility and has given me some more strengthening exercises to do, I still experience pain from my stress fractures but I don't complain because there are people who are suffering more than I am.
Last night I went to the AIS with Mum and Jarrett to watch Jarrett run at an Interclub meeting. He ran in the 1500m handicap race, because he is so fast he was the last runner to take off, giving some runners a two minute head start. He flew around the track and by the final lap he had caught up to almost all the runners and finished fourth but he would have run the fastest time. There were disabled and wheelchair athletes competing also, I was in awe of their amazing abilities, the wheelchair athletes have so much strength in their arms. Watching these athletes really inspired me to push myself to gain strength so that I can be out on that track next season competing again.
Next week will be a busy one with appointments and visits from friends and of course it all culminates with Christmas Day a joyous and special time. I found a quote in a little book that I was given it is by John Greenleaf Whittier and it says "Somehow, not only for Christmas, but all the long year through, the joy that you give to others, is the joy that comes back to you and the more you spend in blessing the poor and lonely and sad, the more of your heart's possessing, returns to you glad". I think it really sums up that if you give to others freely and lovingly then your heart is filled with joy and your life is more blessed.
With Nalani off her feet and me still recovering from my cough we have had a fairly quiet week at home playing board games and watching numerous movies. Our weather has been far more pleasant than the wild rain and winds of previous weeks.
On Saturday Dad and I bought some new plants for my fairy garden, instead of being overgrown hiding my lovely fairies they are now visible and sparkling in the sunlight beside my delicate new flowers. I moved one of my solar lights to a higher level so that my garden can be seen more clearly at night time. Dad put clear estapol on my wishing well to protect it from the weather and it too sparkles brilliantly and looks ever so magical.
I remain on my phosphate, which I have to take two every day, I had a blood test on Thursday and see my paediatrician on Monday, he will review my results and inform me whether I have to continue taking them. I am excited about seeing him so I can show him how clever I have become at using my rollator to regain mobility. I am becoming quite a speed demon around the house using my rollator.
Tinkerbelle is extremely amused and entertained by the Christmas decorations we have put up, she sits on our entertainment unit and plays with the various decorations we have placed on the Christmas tree. We have Christmas lights in the windows and she loves to watch them change colour. There is a little gift under the tree for her and the other cats, I think she is going to love helping open it on Christmas day.
Nalani's knee continues to heal, she is not very mobile, I am more mobile than she is so that makes me feel terrific. She sees her surgeon on Monday also and he is going to remove some of her bandaging and readjust her brace so that she will be able to bend her knee a little, that will make a difference for her, having your knee straight all the time would be exceptionally difficult, when Nalani walks at the moment she walks like a chicken. We have all being taking good care of her, it will be fantastic though when she will be able to be more independent.
My cough has taken a while to improve, I still have it and I am taking my Bactrim to help it, it is more of a broken cough now which is better because before when I was coughing it felt like my chest was going to break, especially my ribs which hurt for a few days.
I still have my tinnitus which is the ringing in my ears, having had it for so long now, I forget what it is like to not have it. At night to help me go to sleep I listen to music, it blocks out the ringing a little because it is close to Christmas I have been listening to a Christmas CD, my favourite Christmas song is Silent Night. Mum used to sing it to me when I was a baby and when I was older to help me sleep, I think it is a beautiful song. I also love Santa Claus is coming to town, it is one of those songs that once you hear it, it gets stuck in your head.
With Christmas so close I have been looking through our cook books and have planned what I am going to cook this year, I am going to make coconut ice, apple turnovers, chocolate cake pops, vanilla kisses and my masterpiece will be a meringue tower tree.
Someone on my Blog asked me about making a donation for Christmas to the Brain Tumour Fund, it is The Sydney Children's Hospital Foundation Brain Tumour Fund and the address is The Sydney Childrens Hopsital Foundation Locked Bag 5 Randwick NSW 2031 and you make it attention to Tara Donnelly. This is where the money that I have been raising from my book, money tins, walk-a-thons, garage sales and paintings goes to, it goes towards research and rehabilitation programs for paediatric Brain Tumours. Another fund is the one that Dr Teo set up and that is the one that the Train for the Brain Fun Run and Walk raised money for and that is the Cure 4 Life Foundation that money also goes towards research for Brain Tumours.
I had physiotherapy with the wonderful Rhiannon on Friday and she is very impressed with my mobility and has given me some more strengthening exercises to do, I still experience pain from my stress fractures but I don't complain because there are people who are suffering more than I am.
Last night I went to the AIS with Mum and Jarrett to watch Jarrett run at an Interclub meeting. He ran in the 1500m handicap race, because he is so fast he was the last runner to take off, giving some runners a two minute head start. He flew around the track and by the final lap he had caught up to almost all the runners and finished fourth but he would have run the fastest time. There were disabled and wheelchair athletes competing also, I was in awe of their amazing abilities, the wheelchair athletes have so much strength in their arms. Watching these athletes really inspired me to push myself to gain strength so that I can be out on that track next season competing again.
Next week will be a busy one with appointments and visits from friends and of course it all culminates with Christmas Day a joyous and special time. I found a quote in a little book that I was given it is by John Greenleaf Whittier and it says "Somehow, not only for Christmas, but all the long year through, the joy that you give to others, is the joy that comes back to you and the more you spend in blessing the poor and lonely and sad, the more of your heart's possessing, returns to you glad". I think it really sums up that if you give to others freely and lovingly then your heart is filled with joy and your life is more blessed.
Friday, December 10, 2010
SCHOOL FINISHES AND NALANI'S SURGERY
4th to 10th December 2010
This last week has been a busy one, it was the last week of school which is rather disappointing, I wish I had been able to do the full Term but there is always next year to enjoy. I feel so fortunate to have had a teacher who nurtured, encouraged and supported me, she is leaving and will be greatly missed by the School.
I had to go to see my General Practitioner this week as I had a burning, irritated throat, was running a fever and had a frightful cough, I felt dreadful but he put me on a course of antibiotics ones which also cover whopping cough as it is going around and he did not want to risk me getting that. My throat has improved, my fever has gone but I still have a nasty cough but am hoping it will disappear soon.
I have been practising my walking with my rollator and doing my physiotherapy exercising which Rhiannon who I think should be known as Super Rhiannon because she is incredible gave me to do on Monday. My stress fractures continue to heal but are still painful sometimes but I just try to ignore the pain and stop if it becomes too severe. I think Rhiannon was so excited when I walked into the physiotherapy room using my rollator, hey I am a little off balanced and limp and I am definitely not perfect but I am doing my very best.
This week I also found out that Sydney want me to have my MRI here in Canberra before the 4th January when they wish to see me again. I will only go to Sydney for one day and see my Oncologist and have my lumber puncture in same day. Then in April, I have a huge review which will mean I have to spend a week or longer there.
Today was Nalani's knee surgery, we had to be at the hospital by 7.30am, then her surgery was scheduled for 9am but she did not get operated on until 11.45am. The surgeon did a MPFL Repair and was extremely happy with the outcome, he even gave Nalani photographs from the actual surgery showing her what he had done, it was really amazing. She has a large knee brace on her leg, it has a special adjustment on the side that is set at zero degrees because she has to keep it straight. She was excited that it was only a repair because it will be a quicker recovery for her, she is able to walk on her leg but has to also rest it as much as possible. Poor Nalani though has been feeling a bit nauseous though, it could be from the surgery or from the strong pain killers she is on which are morphine based. Hopefully after a good night sleep tonight she will wake up tomorrow feeling much better. She was very brave and she told me she thought about a card that I had given to her and that inspired her.
The rain has finally stopped, the deluge we have received has been incredible, everywhere is so brilliantly green and water is abundant but it has also caused flooding which has damaged businesses and homes.
Christmas is only fifteen days away, it is a time to reflect and to give to others let us all open our hearts to those that have been through difficult times or who are struggling this Christmas.
This last week has been a busy one, it was the last week of school which is rather disappointing, I wish I had been able to do the full Term but there is always next year to enjoy. I feel so fortunate to have had a teacher who nurtured, encouraged and supported me, she is leaving and will be greatly missed by the School.
I had to go to see my General Practitioner this week as I had a burning, irritated throat, was running a fever and had a frightful cough, I felt dreadful but he put me on a course of antibiotics ones which also cover whopping cough as it is going around and he did not want to risk me getting that. My throat has improved, my fever has gone but I still have a nasty cough but am hoping it will disappear soon.
I have been practising my walking with my rollator and doing my physiotherapy exercising which Rhiannon who I think should be known as Super Rhiannon because she is incredible gave me to do on Monday. My stress fractures continue to heal but are still painful sometimes but I just try to ignore the pain and stop if it becomes too severe. I think Rhiannon was so excited when I walked into the physiotherapy room using my rollator, hey I am a little off balanced and limp and I am definitely not perfect but I am doing my very best.
This week I also found out that Sydney want me to have my MRI here in Canberra before the 4th January when they wish to see me again. I will only go to Sydney for one day and see my Oncologist and have my lumber puncture in same day. Then in April, I have a huge review which will mean I have to spend a week or longer there.
Today was Nalani's knee surgery, we had to be at the hospital by 7.30am, then her surgery was scheduled for 9am but she did not get operated on until 11.45am. The surgeon did a MPFL Repair and was extremely happy with the outcome, he even gave Nalani photographs from the actual surgery showing her what he had done, it was really amazing. She has a large knee brace on her leg, it has a special adjustment on the side that is set at zero degrees because she has to keep it straight. She was excited that it was only a repair because it will be a quicker recovery for her, she is able to walk on her leg but has to also rest it as much as possible. Poor Nalani though has been feeling a bit nauseous though, it could be from the surgery or from the strong pain killers she is on which are morphine based. Hopefully after a good night sleep tonight she will wake up tomorrow feeling much better. She was very brave and she told me she thought about a card that I had given to her and that inspired her.
The rain has finally stopped, the deluge we have received has been incredible, everywhere is so brilliantly green and water is abundant but it has also caused flooding which has damaged businesses and homes.
Christmas is only fifteen days away, it is a time to reflect and to give to others let us all open our hearts to those that have been through difficult times or who are struggling this Christmas.
Friday, December 3, 2010
BACK HOME AT LAST
2nd December 2010
A wonderful follower on my Blog reminded me of what Dorothy from the Wizard of Oz said, that there is no place like home and that is so very true. My latest journey is like having being lost in another world where it was so dark and terrifying, I was so scared and confused and then finally I was seeing a light that kept getting brighter the closer I got to it and that light was the warmth and love of my family and home, I am now safe and happy.
I am not going to say much about what has happened to me other than I would say the whole experience was more terrifying and upsetting than going through Chemotherapy. I have put it in the past though and have grown from it.
It is so wonderful to be writing again, I missed it so much, it is an important part of my life and it gives me strength, I have decided though that I will update my Blog each week so it will not affect my health. Raising awareness about Brain Tumours will always be a goal I have, having goals in your life helps you to achieve your dreams.
I have been back at school and I am now looking forward to the challenges and successes of the school year next year and hopefully I will be able to be there more than the past couple of years, although continuing doctors appointments will keep me away some times.
Now I am back home I have been able to use my rollator, it supports me when I walk and helps me to build up my muscles that have deteriorated so much from having to stay in bed continually for the weeks I was in hospital. My right foot is still painful from the stress fractures as I begin to put weight on it again but my determination to be out of my wheelchair next year and more mobile helps me overcome it.
Christmas is getting so close, it is the most wonderful time of the year because it is about giving and loving, it is a family time and a time to reach out to others. Putting our Christmas tree up and decorating it was such a special ocassion for me this year.
Nalani has her knee surgery on 10th December, she is looking forward to having it done at last but is becoming a little nervous so I have been trying to help her not feel so afraid. I think if you try to always be positive and relaxed through situations that are stressful or upsetting it can really make a difference.
We have been having dismal weather here in Canberra, the rain has been falling from the skies continuously for a week, the grass is so green and our dams are abundant but as it is now Summer it would be marvellous to have just a little sun shinning through those thick, heavy rain clouds and smiling on our days.
Thank you to everyone who has continued to follow my journey, you are all very special and I am so inspired by all of you.
A wonderful follower on my Blog reminded me of what Dorothy from the Wizard of Oz said, that there is no place like home and that is so very true. My latest journey is like having being lost in another world where it was so dark and terrifying, I was so scared and confused and then finally I was seeing a light that kept getting brighter the closer I got to it and that light was the warmth and love of my family and home, I am now safe and happy.
I am not going to say much about what has happened to me other than I would say the whole experience was more terrifying and upsetting than going through Chemotherapy. I have put it in the past though and have grown from it.
It is so wonderful to be writing again, I missed it so much, it is an important part of my life and it gives me strength, I have decided though that I will update my Blog each week so it will not affect my health. Raising awareness about Brain Tumours will always be a goal I have, having goals in your life helps you to achieve your dreams.
I have been back at school and I am now looking forward to the challenges and successes of the school year next year and hopefully I will be able to be there more than the past couple of years, although continuing doctors appointments will keep me away some times.
Now I am back home I have been able to use my rollator, it supports me when I walk and helps me to build up my muscles that have deteriorated so much from having to stay in bed continually for the weeks I was in hospital. My right foot is still painful from the stress fractures as I begin to put weight on it again but my determination to be out of my wheelchair next year and more mobile helps me overcome it.
Christmas is getting so close, it is the most wonderful time of the year because it is about giving and loving, it is a family time and a time to reach out to others. Putting our Christmas tree up and decorating it was such a special ocassion for me this year.
Nalani has her knee surgery on 10th December, she is looking forward to having it done at last but is becoming a little nervous so I have been trying to help her not feel so afraid. I think if you try to always be positive and relaxed through situations that are stressful or upsetting it can really make a difference.
We have been having dismal weather here in Canberra, the rain has been falling from the skies continuously for a week, the grass is so green and our dams are abundant but as it is now Summer it would be marvellous to have just a little sun shinning through those thick, heavy rain clouds and smiling on our days.
Thank you to everyone who has continued to follow my journey, you are all very special and I am so inspired by all of you.
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