6th November 2010
Latest news on Dainere is that following an MRI it has been found she has stress fractures in her right foot, this means she has to stay off it for a least another two weeks and then it is a slow recovery. She is disappointed about this but said she had a feeling it would show that as it was so painful.
She was seen by the Renal Team who told us that the Chemotherapy Drug Cisplatin that has caused her hearing loss is also causing problems with the kidneys, hers are not functioning properly and they are leaking phosphate, hence the difficulty in maintaining her phosphate levels. We were also informed that her Caltrate should not be taken with food as combines and makes it less effective and harders also to absorb phosphate.
Her treatment with Radiotherapy and Chemotherapy will have an effect on her bones and it is something that can be controlled with medication, we are still waiting for any results on the bone density.
Much to her delight, her NG tube was removed late yesterday afternoon, she no longer requires night feeds with the ensure. In fact she has put on more weight than anticipated by the nutritional team. Hopefully she will now be moved up to Stage 3 and progress home very soon.
We wish to remind you all that today is the Train for the Brain Fun Run and Walk in Canberra, hopefully there will be a huge turnout to help raise awareness and funds for Brain Tumours.
Despite what she has endured her smile continues to radiate the ward.
Saturday, November 6, 2010
Thursday, November 4, 2010
A PAUSE IN THE BLOG BUT WATCH FOR UPDATES
Dear Wonderful Followers
It is with a heavy heart that we wish to announce that Dainere has been medically advised to take a little break from her Blog and be selfish, this is something Dainere has and will never be but apparently most teenagers are. It has always been her greatest dream since starting her Blog, which helped her through some dark days, to inspire, encourage, raise awareness and funds for brain tumours in the hope of finding a cure for all in the future. She has been devastated by this but she hopes to be able to continue her story at a later date. Inspiring others is a wonderful achievement, we are so proud of Dainere and hope that she will continue to share her gift of inspiring others. We invite you to still keep in touch as she gains strength and courage from you all.
As a family we have decided that Dainere's Blog and Dainere are important to many people so we will give you some regular updates on her health, of course it won't be written in her unique way. We would also encourage you to continue to help raise awareness about Brain Tumours.
Love Stephen, Yvonne, Nalani, Jarrett and Dainere xxxxxxxxxxxxxxx
It is with a heavy heart that we wish to announce that Dainere has been medically advised to take a little break from her Blog and be selfish, this is something Dainere has and will never be but apparently most teenagers are. It has always been her greatest dream since starting her Blog, which helped her through some dark days, to inspire, encourage, raise awareness and funds for brain tumours in the hope of finding a cure for all in the future. She has been devastated by this but she hopes to be able to continue her story at a later date. Inspiring others is a wonderful achievement, we are so proud of Dainere and hope that she will continue to share her gift of inspiring others. We invite you to still keep in touch as she gains strength and courage from you all.
As a family we have decided that Dainere's Blog and Dainere are important to many people so we will give you some regular updates on her health, of course it won't be written in her unique way. We would also encourage you to continue to help raise awareness about Brain Tumours.
Love Stephen, Yvonne, Nalani, Jarrett and Dainere xxxxxxxxxxxxxxx
Wednesday, November 3, 2010
STILL IN SYDNEY AND STILL WAITING FOR AN MRI
2nd and 3rd November 2010
'The wind blows in a certain direction which I can't change but I can adjust my own sails to reach the destination that I am hoping for'
I remain in Sydney with a nasal gastric tube still sticking out of my nose, making my throat sore and in general really bothersome. I have had another ECG which was absolutely perfect, so no heart problems, I am eating 'king size' meals and finishing them all, there is no way that I want to be told I have an eating disorder and I just want to return home so I am doing everything that is asked of me and more.
Chemotherapy has reduced my kidney function so it is not functioning at the full one hundred percent, it has to be kept an eye on as it is at eighty per cent but that is not serious. My bloods have been good including my blood sugar levels, however my phosphate has been going up and down like a yoyo and they are yet to come up with an explanation for that.
My bone density results have come back however as Mum is not with me all the time, I did not understand what the doctor said about them, all I really understood was that she was having them verified by another doctor at Westmead. The high doses of radiotherapy that I had can affect your bones as well as the chemotherapy, I am on caltrate which is a calcium supplement so hopefully that will assist it.
I had occupational therapy yesterday and we made cup cakes which I was allowed to have one to eat for morning tea, they were chocolate ones and were extremely light and delicious. As you know I love cooking at home and do lots of it so this was easy for me, I am not sure if they were testing me to see if I really could cook, I feel so much like that I am been watched or examined under a microscope.
School is nothing like at home, I much prefer my class and curriculum, I just wish I was there right now, today would be my electives, French and Textiles yet I am stuck here. In textiles I am missing out on doing knitting and that is something that Mum has already taught me and I think I am quite expert at, now I won't get to show my Textiles teacher how good I am.
I have still not had an MRI on my foot and Mum has questioned it over and over again and we keep getting told it will get done eventually they are busy and have to fit me in, in the meantime I have to suffer in pain and not know what has happened to it. There were other tests that they were talking about also that have not as yet occurred.
My nights are still so lonely, I miss Cosima licking my head in the middle of the nigh and purring loudly in my ear and hearing the familiar sounds of my family as they sleep. When I wake with pain or a nightmare, I can't call to Mum and have her comfort me, I have to stare in silence and pretend she is there.
On the Ward they had a person come and do stretch and relax classes, I was allowed to do them to try to help my muscles as they have been wasting from sitting around and I am not allowed to do my physiotherapy exercises that Rhiannon gave me at all until they know what is happening with my foot. This is so frustrating, I was just building up my muscles and they are now wasting again, I don't see how this could be helping me progress in any way. I wish I had my rollator here, I was doing exceptionally well with it, although I would not be able to use it because of my foot, wow what a vicious circle.
In the afternoon I got to see Mum, I count the hours each day until I see her, we always hug each other so tightly, say how much we have missed being together and how much we love each other. Some people think that girls my age and their mother should not get along, that we should be arguing because I am becoming an individual and resent my parent, but I love Mum so much and I know that she loves me too. Nalani and Jarrett get along with Mum really well also, we are just that sort of family, why argue with each other life is too precious to do that.
Last night when Nalani and Jarrett called, Nalani told me that she had been nominated for Student Leader for next year, I was so proud and excited for her, I think she really deserves to be selected, she is a generous, caring, responsible person who would put her heart into the position.
I had another huge breakfast this morning and then they are having me do art therapy, which is good, I guess because I like art but sometimes I feel that I am wasting my time here, I could be doing art back home.
When you are stuck in hospital, you miss seeing the splendiferous blue sky with the wispy, cotton wool clouds floating gently, forming magical shapes, I miss the sun shinning down to warm my face and fill me with hope and the fresh air that enters my lungs and helps me breath. Each day I am here, is a wasted day that I could be making the most of. I am hoping that I will be able to adjust my sails and sail home in the wind very soon.
'The wind blows in a certain direction which I can't change but I can adjust my own sails to reach the destination that I am hoping for'
I remain in Sydney with a nasal gastric tube still sticking out of my nose, making my throat sore and in general really bothersome. I have had another ECG which was absolutely perfect, so no heart problems, I am eating 'king size' meals and finishing them all, there is no way that I want to be told I have an eating disorder and I just want to return home so I am doing everything that is asked of me and more.
Chemotherapy has reduced my kidney function so it is not functioning at the full one hundred percent, it has to be kept an eye on as it is at eighty per cent but that is not serious. My bloods have been good including my blood sugar levels, however my phosphate has been going up and down like a yoyo and they are yet to come up with an explanation for that.
My bone density results have come back however as Mum is not with me all the time, I did not understand what the doctor said about them, all I really understood was that she was having them verified by another doctor at Westmead. The high doses of radiotherapy that I had can affect your bones as well as the chemotherapy, I am on caltrate which is a calcium supplement so hopefully that will assist it.
I had occupational therapy yesterday and we made cup cakes which I was allowed to have one to eat for morning tea, they were chocolate ones and were extremely light and delicious. As you know I love cooking at home and do lots of it so this was easy for me, I am not sure if they were testing me to see if I really could cook, I feel so much like that I am been watched or examined under a microscope.
School is nothing like at home, I much prefer my class and curriculum, I just wish I was there right now, today would be my electives, French and Textiles yet I am stuck here. In textiles I am missing out on doing knitting and that is something that Mum has already taught me and I think I am quite expert at, now I won't get to show my Textiles teacher how good I am.
I have still not had an MRI on my foot and Mum has questioned it over and over again and we keep getting told it will get done eventually they are busy and have to fit me in, in the meantime I have to suffer in pain and not know what has happened to it. There were other tests that they were talking about also that have not as yet occurred.
My nights are still so lonely, I miss Cosima licking my head in the middle of the nigh and purring loudly in my ear and hearing the familiar sounds of my family as they sleep. When I wake with pain or a nightmare, I can't call to Mum and have her comfort me, I have to stare in silence and pretend she is there.
On the Ward they had a person come and do stretch and relax classes, I was allowed to do them to try to help my muscles as they have been wasting from sitting around and I am not allowed to do my physiotherapy exercises that Rhiannon gave me at all until they know what is happening with my foot. This is so frustrating, I was just building up my muscles and they are now wasting again, I don't see how this could be helping me progress in any way. I wish I had my rollator here, I was doing exceptionally well with it, although I would not be able to use it because of my foot, wow what a vicious circle.
In the afternoon I got to see Mum, I count the hours each day until I see her, we always hug each other so tightly, say how much we have missed being together and how much we love each other. Some people think that girls my age and their mother should not get along, that we should be arguing because I am becoming an individual and resent my parent, but I love Mum so much and I know that she loves me too. Nalani and Jarrett get along with Mum really well also, we are just that sort of family, why argue with each other life is too precious to do that.
Last night when Nalani and Jarrett called, Nalani told me that she had been nominated for Student Leader for next year, I was so proud and excited for her, I think she really deserves to be selected, she is a generous, caring, responsible person who would put her heart into the position.
I had another huge breakfast this morning and then they are having me do art therapy, which is good, I guess because I like art but sometimes I feel that I am wasting my time here, I could be doing art back home.
When you are stuck in hospital, you miss seeing the splendiferous blue sky with the wispy, cotton wool clouds floating gently, forming magical shapes, I miss the sun shinning down to warm my face and fill me with hope and the fresh air that enters my lungs and helps me breath. Each day I am here, is a wasted day that I could be making the most of. I am hoping that I will be able to adjust my sails and sail home in the wind very soon.
Monday, November 1, 2010
MISSING HOME
31st October and 1st November 2010
At night when I am lying in my hospital bed holding Theodore tightly for comfort, I shed silent tears, I am missing home so dreadfully and not having Mum close, even though she is in Sydney, we are not in the same place at night. My nightmares that I used to have about been behind the door and calling to Mum and her not hearing me have started again. I am scared, at least when I have been through all the other difficult times throughout my journey, Mum has been so close.
My weekend was as good as it could be considering I was stuck in hospital, Mum was able to be there apart from at night, which made the sun shine within me. We had dinner together on both Saturday and Sunday night, almost like home except the rest of the family were missing. We were able to go for a walk around the hospital grounds, my eyes hurt at first because I had not seen the light or experienced the freshness of the outside air for over a week.
I still have the nasal gastric tube and it is beginning to become irritating, it is itchy and it actually hurts near the corner of my nose where it is inserted, the nurses told me that people often get ulcers from them and that is what they suspect will happen to me, so once it is out, I will be given some cream for it. The doctor told me yesterday that it would be coming out soon but would not give me a definite day.
Hopefully today I will have my MRI on my right foot, it still not been done and my foot is extremely painful, I try to relieve it with deep heat and Mum rubbing it when she can. I attempted to put some weight on it yesterday and nearly flew through the roof, I wish I knew what was wrong with it so I could start some rehabilitation for it.
This morning I had my blood taken again, you should see my arms, they have holes everywhere from all the blood tests and are very bruised, talk about been a pin cushion. An ECG is supposed to be done today, the other ones were fine, they just wanted to check one last time to make sure there is no problems with my heart. My pulse rate and blood pressure have all been great although my blood pressure is as always was on the low side.
Mum called me this morning before I went to school, I was so pleased to hear her voice, I will not see her until later this afternoon unless she is called in for any of my appointments. They should of let her go with me for my bone density on Friday because there were questions about the family history that I could not answer, so Mum had to let the doctor know and then it had to be passed on because it was important.
School is not like at home, I miss my Teacher and my friends at school, also because this is New South Wales the work is very different to what we do back home at school. Not only last year did I miss school, I have missed quite a bit this year due to my follow ups every three months and now this.
Someone said it is overcast outside today and quite cool, I would not know being stuck in here but hope the sun will shine very soon and I will be back home and able to enjoy my life again.
At night when I am lying in my hospital bed holding Theodore tightly for comfort, I shed silent tears, I am missing home so dreadfully and not having Mum close, even though she is in Sydney, we are not in the same place at night. My nightmares that I used to have about been behind the door and calling to Mum and her not hearing me have started again. I am scared, at least when I have been through all the other difficult times throughout my journey, Mum has been so close.
My weekend was as good as it could be considering I was stuck in hospital, Mum was able to be there apart from at night, which made the sun shine within me. We had dinner together on both Saturday and Sunday night, almost like home except the rest of the family were missing. We were able to go for a walk around the hospital grounds, my eyes hurt at first because I had not seen the light or experienced the freshness of the outside air for over a week.
I still have the nasal gastric tube and it is beginning to become irritating, it is itchy and it actually hurts near the corner of my nose where it is inserted, the nurses told me that people often get ulcers from them and that is what they suspect will happen to me, so once it is out, I will be given some cream for it. The doctor told me yesterday that it would be coming out soon but would not give me a definite day.
Hopefully today I will have my MRI on my right foot, it still not been done and my foot is extremely painful, I try to relieve it with deep heat and Mum rubbing it when she can. I attempted to put some weight on it yesterday and nearly flew through the roof, I wish I knew what was wrong with it so I could start some rehabilitation for it.
This morning I had my blood taken again, you should see my arms, they have holes everywhere from all the blood tests and are very bruised, talk about been a pin cushion. An ECG is supposed to be done today, the other ones were fine, they just wanted to check one last time to make sure there is no problems with my heart. My pulse rate and blood pressure have all been great although my blood pressure is as always was on the low side.
Mum called me this morning before I went to school, I was so pleased to hear her voice, I will not see her until later this afternoon unless she is called in for any of my appointments. They should of let her go with me for my bone density on Friday because there were questions about the family history that I could not answer, so Mum had to let the doctor know and then it had to be passed on because it was important.
School is not like at home, I miss my Teacher and my friends at school, also because this is New South Wales the work is very different to what we do back home at school. Not only last year did I miss school, I have missed quite a bit this year due to my follow ups every three months and now this.
Someone said it is overcast outside today and quite cool, I would not know being stuck in here but hope the sun will shine very soon and I will be back home and able to enjoy my life again.
Saturday, October 30, 2010
IN SYDNEY STILL
29th and 30th October 2010
'There is a star that shines for me....it gives me love and sets me free. There is a star that shines for me.....it shines for all tonight'
I saw this quote on a piece of artwork hanging on one of the walls of the hospital when I was allowed to go for a half hour walk from the Ward. I am going to be in Sydney for a little while longer while they do numerous tests to try to find out what is going on with my body.
My MRI has not been done as yet, so I still no answers about my foot, so until I have the MRI and we know what it is I am unable to do any weight bearing on that foot and no physiotherapy has been done. I went for my bone density test though, it was similar to an x-ray but a machine ran over the top of me and took images, I had to maneuver into different positions that they told me to. The results of that should come back next week, it has already been established I have osteopenia but the bone density will determine whether I have osteoporosis also and then I will require treatment for that.
I went to school in the afternoon only, I go with the High School students and we did some handwriting and I had to write a recount of my morning, I did not have access to a computer so this was difficult and tiring for me, my right hand became tired, so I changed to my left, it is so useful to be able to write with both, perhaps everyone should try it because you never know when you may need it.
The weekends are terrific when you are in hospital because tests can't be done, apart from my blood test which I have to have every single morning. Mum is able to be with me for just about the entire day, Mum and I are very close, I love her so much. She is also allowed to have dinner with me tonight, she has had to have take away because she was moving from place to place all the time, she said she felt like a gypsy but now she has a place for a few nights. Mum has to bring her own food for the dinner and I have the hospital food, it will be great to have a meal with her and feel normal for a night.
I still miss home dreadfully but I have decided that the time will go very quickly and before I know it I will be back home with Dad and the others, in my own bed and doing the activities I love to do. I wish that there was a children's hospital in Canberra, it is so distressing for children to be so far from home when they are not well, that is the time that you need to be in your home with all the people who love you. Maybe there is some way that a hospital for children can be built, we are the Nations Capital after all.
Some good news is that my blood sugar levels which had gone high for no apparent reason and they were talking about diabetes have now come back down to a safe level, at least I have some good news to share. I also have some non medical news to share about Jarrett, he ran at Interclub last night and in the 1500m he did 4:16:00 which is terrific because in March at Olympic Park he ran a 4:19:00 so that is a personal best for him, then he ran in the 400m and did 57:00, another personal best, I am so proud of him. I am hoping that next year I will be there doing personal bests of my own.
Thank you again to everyone, you are all helping me to get over another hurdle, things are still not great but I have found that strength from within to move on, they can poke and prod me all they want and I will be courageous and accepting of it all, the one thing that truly hurts is Mum and I being away from Dad, Nalani and Jarrett.
'There is a star that shines for me....it gives me love and sets me free. There is a star that shines for me.....it shines for all tonight'
I saw this quote on a piece of artwork hanging on one of the walls of the hospital when I was allowed to go for a half hour walk from the Ward. I am going to be in Sydney for a little while longer while they do numerous tests to try to find out what is going on with my body.
My MRI has not been done as yet, so I still no answers about my foot, so until I have the MRI and we know what it is I am unable to do any weight bearing on that foot and no physiotherapy has been done. I went for my bone density test though, it was similar to an x-ray but a machine ran over the top of me and took images, I had to maneuver into different positions that they told me to. The results of that should come back next week, it has already been established I have osteopenia but the bone density will determine whether I have osteoporosis also and then I will require treatment for that.
I went to school in the afternoon only, I go with the High School students and we did some handwriting and I had to write a recount of my morning, I did not have access to a computer so this was difficult and tiring for me, my right hand became tired, so I changed to my left, it is so useful to be able to write with both, perhaps everyone should try it because you never know when you may need it.
The weekends are terrific when you are in hospital because tests can't be done, apart from my blood test which I have to have every single morning. Mum is able to be with me for just about the entire day, Mum and I are very close, I love her so much. She is also allowed to have dinner with me tonight, she has had to have take away because she was moving from place to place all the time, she said she felt like a gypsy but now she has a place for a few nights. Mum has to bring her own food for the dinner and I have the hospital food, it will be great to have a meal with her and feel normal for a night.
I still miss home dreadfully but I have decided that the time will go very quickly and before I know it I will be back home with Dad and the others, in my own bed and doing the activities I love to do. I wish that there was a children's hospital in Canberra, it is so distressing for children to be so far from home when they are not well, that is the time that you need to be in your home with all the people who love you. Maybe there is some way that a hospital for children can be built, we are the Nations Capital after all.
Some good news is that my blood sugar levels which had gone high for no apparent reason and they were talking about diabetes have now come back down to a safe level, at least I have some good news to share. I also have some non medical news to share about Jarrett, he ran at Interclub last night and in the 1500m he did 4:16:00 which is terrific because in March at Olympic Park he ran a 4:19:00 so that is a personal best for him, then he ran in the 400m and did 57:00, another personal best, I am so proud of him. I am hoping that next year I will be there doing personal bests of my own.
Thank you again to everyone, you are all helping me to get over another hurdle, things are still not great but I have found that strength from within to move on, they can poke and prod me all they want and I will be courageous and accepting of it all, the one thing that truly hurts is Mum and I being away from Dad, Nalani and Jarrett.
Thursday, October 28, 2010
LATEST UPDATE
26th to 28th October 2010
I have now been seen by a marvellous paediatrician who has looked into many aspects of my illness, surgery, treatment and how I am now. It appears that this could all be an Endocrine issue which goes as far back as to the beginning of my chemotherapy. Basically I stopped growing, I have not grown in a year, my tumour in the pituitary has stopped me growing and it can also affect your metabolism, so I now have to see a new Endocrinologist and it is likely I will be put on daily hormone injections.
My xray results came back, I do not have a fracture but I now have to have an MRI as it is suspected I have a stress fracture or severs disease which is a tendon problem. I have seen a cardiologist and my heart is in fantastic shape, my seizures are from electrical waves in my brain that cross.
I am seeing a new nutritionist on Friday and physiotherapist. Now under the care of a better doctor my storm is beginning to turn to a shower, I know that a rainbow of hope will appear for me. This experience has affected me terribly but I will bring forth my strength and then I can only grow from it.
Today I have had art therapy and I am at school working on my Australian Studies Assessment on the Australian Flag. I can hardly wait until this afternoon when I will see Mum and be able to tell her all about my day.
I miss my family, home and friends back home, it was a long, difficult year last year being in hospital and away, I thought that this year my life would be moving forward, I would be full of strength and happiness but obviously God's plan is for me to still have some hurdles to cross.
If you watch Parliament today, you may just catch a glimpse of our politicians wearing a grey ribbon for Brian Tumour Awareness Week. I was supposed to be at a special morning tea at Parliament House today to celebrate, I am so disappointed that I could not share such an important occasion for a cause that I am so passionate about.
I wish to thank you all for your words of encouragement they have truly helped me through these last few dark days, I am so blessed to have you all in my life, you are my rainbows.
'When dark clouds fill your sky, remember the sun is always waiting to shine from behind"
I have now been seen by a marvellous paediatrician who has looked into many aspects of my illness, surgery, treatment and how I am now. It appears that this could all be an Endocrine issue which goes as far back as to the beginning of my chemotherapy. Basically I stopped growing, I have not grown in a year, my tumour in the pituitary has stopped me growing and it can also affect your metabolism, so I now have to see a new Endocrinologist and it is likely I will be put on daily hormone injections.
My xray results came back, I do not have a fracture but I now have to have an MRI as it is suspected I have a stress fracture or severs disease which is a tendon problem. I have seen a cardiologist and my heart is in fantastic shape, my seizures are from electrical waves in my brain that cross.
I am seeing a new nutritionist on Friday and physiotherapist. Now under the care of a better doctor my storm is beginning to turn to a shower, I know that a rainbow of hope will appear for me. This experience has affected me terribly but I will bring forth my strength and then I can only grow from it.
Today I have had art therapy and I am at school working on my Australian Studies Assessment on the Australian Flag. I can hardly wait until this afternoon when I will see Mum and be able to tell her all about my day.
I miss my family, home and friends back home, it was a long, difficult year last year being in hospital and away, I thought that this year my life would be moving forward, I would be full of strength and happiness but obviously God's plan is for me to still have some hurdles to cross.
If you watch Parliament today, you may just catch a glimpse of our politicians wearing a grey ribbon for Brian Tumour Awareness Week. I was supposed to be at a special morning tea at Parliament House today to celebrate, I am so disappointed that I could not share such an important occasion for a cause that I am so passionate about.
I wish to thank you all for your words of encouragement they have truly helped me through these last few dark days, I am so blessed to have you all in my life, you are my rainbows.
'When dark clouds fill your sky, remember the sun is always waiting to shine from behind"
Wednesday, October 27, 2010
LOOKING BRIGHTER
This is Dainere's Dad writing to all her followers and viewers.
Dainere's treatment has taken a turn for the better and wants everyone to know that she is in good hands now as a new team has been formed to treat her.
She expresses her sincere thanks for all the wonderful support, comments and best wishes for her that people have written.
She'll be back at the computer real soon.
Take care and thank you all for your positive support.
Stephen
Dainere's treatment has taken a turn for the better and wants everyone to know that she is in good hands now as a new team has been formed to treat her.
She expresses her sincere thanks for all the wonderful support, comments and best wishes for her that people have written.
She'll be back at the computer real soon.
Take care and thank you all for your positive support.
Stephen
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