25th November 2010
With just a month until Christmas which is such a special yet busy time of the year, I am so pleased to let you all know that Dainere and Yvonne arrived safely in Canberra yesterday afternoon. They went straight to Canberra Hospital which we are pleased to report is a much more nurturing and clean place compared to Sydney.
Dainere now just wants to be back home in her own bed giving Tinkerbelle lots of cuddles, this has been such a dreadful ordeal for the whole family and one which we will try not to let dampen our spirits although it has tested them.
Thank you for all your patience and support throughout the past five weeks.
Thursday, November 25, 2010
Wednesday, November 17, 2010
TRANSFER TO CANBERRA HOSPITAL NEXT WEEK
17th November 2010
A little more positive news today, Dainere is being transferred to Canberra Hospital next Wednesday, there she will be in the capable hands of our own paediatrician. By transferring to Canberra it means that we never have to deal with the pathetic treatment we have been exposed to here. Even today we experienced the vindictiveness of a doctor who against other staffs advice would not discharge Dainere, which was extremely disappointing however we must look at the positive and that is being transferred to Canberra Hospital and treated by our own doctor and his team.
Dainere's MRI and Lumbar puncture have been postponed until January 2011, they had previously been scheduled for 6th December, however we do have to watch for any deterioration in her condition that would indicate changes in the tumour.
The strength and courage that Dainere has been able to display during this difficult, not to mention traumatic experience shows just what an extraordinary girl she truly is and perhaps some of the doctors need to take a lead from her.
We will continue to let you know her progress. Thank you again for all your support towards all of the family, we don't feel so alone through this because of all of you.
A little more positive news today, Dainere is being transferred to Canberra Hospital next Wednesday, there she will be in the capable hands of our own paediatrician. By transferring to Canberra it means that we never have to deal with the pathetic treatment we have been exposed to here. Even today we experienced the vindictiveness of a doctor who against other staffs advice would not discharge Dainere, which was extremely disappointing however we must look at the positive and that is being transferred to Canberra Hospital and treated by our own doctor and his team.
Dainere's MRI and Lumbar puncture have been postponed until January 2011, they had previously been scheduled for 6th December, however we do have to watch for any deterioration in her condition that would indicate changes in the tumour.
The strength and courage that Dainere has been able to display during this difficult, not to mention traumatic experience shows just what an extraordinary girl she truly is and perhaps some of the doctors need to take a lead from her.
We will continue to let you know her progress. Thank you again for all your support towards all of the family, we don't feel so alone through this because of all of you.
Wednesday, November 10, 2010
NEWS ON DAINERE
10th November 2010
We just wanted to let you know how Dainere is going.
She is having difficulties maintaining her phosphate levels due to leakage from her kidney's which you already are aware have been damaged from the Cisplatin.
No results as yet on the bone density as they have new machinery which requires conversions to work out the exact results.
Her right foot continues to be painful with the stress fracture, they are looking at her having some physiotherapy of the non-weight bearing type later this week.
She is still off her caltrate as it was stopping the absorption of the phosphate also, she will remain off it and if her phosphate still stays the same then that is obviously the best they can achieve, so she will then be taken off phosphate and given caltrate as it appears she will have to remain on it permanently.
She is now classed as Stage 3 as part of the program, this is the final stage and leads to discharge, it appears it will most likely be in the next couple of weeks.
Once discharged she will be treated by our paediatrician and his team back home, she is not able to go to school for the rest of the year to assist her body to recover. This means that she has missed virtually this whole Term.
She is trying to keep her spirits up and be positive, she really misses family and friends back home, this has been rather traumatic for her. Canberra sounds like it has had many rainbows lately we think they are coming out especially for her.
Jarrett won the 5km Run in the Train for the Brain Fun Run on the weekend, which Dainere was extremely excited about.
Thank you again for your support and lovely messages which we have been passing on to our courageous girl.
We just wanted to let you know how Dainere is going.
She is having difficulties maintaining her phosphate levels due to leakage from her kidney's which you already are aware have been damaged from the Cisplatin.
No results as yet on the bone density as they have new machinery which requires conversions to work out the exact results.
Her right foot continues to be painful with the stress fracture, they are looking at her having some physiotherapy of the non-weight bearing type later this week.
She is still off her caltrate as it was stopping the absorption of the phosphate also, she will remain off it and if her phosphate still stays the same then that is obviously the best they can achieve, so she will then be taken off phosphate and given caltrate as it appears she will have to remain on it permanently.
She is now classed as Stage 3 as part of the program, this is the final stage and leads to discharge, it appears it will most likely be in the next couple of weeks.
Once discharged she will be treated by our paediatrician and his team back home, she is not able to go to school for the rest of the year to assist her body to recover. This means that she has missed virtually this whole Term.
She is trying to keep her spirits up and be positive, she really misses family and friends back home, this has been rather traumatic for her. Canberra sounds like it has had many rainbows lately we think they are coming out especially for her.
Jarrett won the 5km Run in the Train for the Brain Fun Run on the weekend, which Dainere was extremely excited about.
Thank you again for your support and lovely messages which we have been passing on to our courageous girl.
Saturday, November 6, 2010
AN UPDATE ON DAINERE
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.
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.
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.
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