Wednesday, June 30, 2010
I was unable to turn myself over in bed and I had to call out to Mum several times to get her to help me, it was because my pain was so intense and my body was too weak to manage by myself. On waking in the morning I was not able to stand on either leg they both just could not take my weight and they crumpled miserably. I am so confused and frustrated, it is so difficult to have to deal with these issues, I am so limited, in constant pain and just can't be a normal twelve year old.
The weather was another polar day with below zero temperatures over night the mercury crept up so slowly during the day it reminded me of my progress. I played Upwords with Nalani and Jarrett whilst Mum got the housework done, remember she is a real clean freak, she vacuums and mops everyday! Judy, the physiotherapist from Sydney called to see how I was going and was disappointed to hear I was not doing too well. She said that I definitely need to see the orthopaedic specialist on my return to Sydney and is also talking about an appointment with a pain clinic when I am there. It seems that these side effects that I am experiencing are rare but do happen and it appears it is mainly in girls. Some people are unable to regain full movement again and only with medication two years after original diagnosis and there are some that it becomes worse in and that is her fear.
It was then time to go to physiotherapy, I had an appointment with Rhiannon at the same time that Jarrett had one with Andrew. I told Rhiannon how the whole of the right side of my body is in constant pain from my toes to my fingertips. I am so lucky to have Rhiannon because she began to loosen the muscles for me in my legs as it is important that I am able to stand if possible. It was quite painful but I muster courage when I need it because I know that it will all assist me. After my muscles were loosened I was able to stand and walk a little so that I could start on the new exercise program that Rhiannon had set me to help build my upper body strength. I have to do a theraband row where I sit and pull the band to my body with straight arms I hold it for two seconds, then I do a theraband punch I use one hand and straighten it, hold it for two seconds and then slowly return. I do ball passes with a partner who is five metres away, we roll the ball on the ground back and forth ten times. I can also do an upright row when I use the theraband, I stand on the band and pull it to waist height, I use chicken wings for this and then I slowly lower it, I have to do two lots of ten of these. These are all exercises to help me with my goal of being able to do the shotput, discus and javelin in the Athletics Carnival at School.
Jarrett received some positive news from his physiotherapy, his injury is healing nicely and he is able to go for a run at 50% pace tomorrow to see how he goes. He was so excited, he hates not being able to do his running, it is his goal to take his running to the next level on day.
After physiotherapy we went to visit Mum's friend Manda and her family. She is going to Spain with her son Niko because he was chosen for a Youth Soccer Team, Niko was in my class in Year 5 and he is a magnificent soccer player. I think that they are going to have so much fun, they said the weather is in the mid thirties, lucky them to have a break from this freezing cold weather.
When we came home I discovered that my right knee was terribly swollen and it kept collapsing under me when I tried to stand in it. My left one was much better which I was so grateful for, one leg is better than none. My hand became more painful later in the day and even to slightly bend my fingers sent intense pain from my fingertips up into my shoulder. I decided to watch The Aristocats DVD to take my mind off my troubles, I cuddled up under my blanket with Theodore and closed my eyes on and off throughout the movie.
You are not going to believe this, but our hot water system began playing up. We have all the luck, I still keep wondering if someone has broken a mirror and did not mention it! It has always being a little different to our old house but over the past few days you only had to put the hot water tap on for a shower and then it was only luke warm. Mum had to boil the kettle all the time to do the dishes. Yesterday the plumber came and he fixed it, something was wrong with a valve and the filter. We now have lovely hot water and you have to turn the cold tap on to have the shower!
I watched Master Chef last night and it was so interesting to see that Peter and Courtney were chosen as one of the three best efforts in the meal they had to cook in the challenge. They have come back strong and very determined.
I had the maximum dose of panadol I could for the day as well as using voltaren and heat. Lying in bed with the electric blanket on helps a little. I moaned in pain and just did not know how to lie without feeling pain, eventually I drifted off only to wake with pain and nightmares. I had that same nightmare that I was experiencing earlier and have not had for quite some time. It is the one where I am calling to Mum but she can not hear me and I am behind a door, but it is a clear door and she is sad and walking away, that dream really upsets me.
Today is the last day of June, the weather today was atrocious, icy winds, overcast and just plain miserable. We had bills to pay, as well as I was sending off another cheque to the Sydney Children's Hospital Foundation Brain Tumour Fund, I always feel so proud when I do this, I know that my little contributions hopefully will make that difference that I so very much desire. I don't want other children to have to suffer what I have had to face especially with the pain caused by the side effects of treatment. I am holding off on a reprint of my book just yet because I want to make sure that it would still sell and continue to raise funds and also it does not have the publicity Australia Wide that we were all hoping might eventuate. I will certainly however keep working on ways to continue to raise funds so that my dream of helping and inspiring others can keep happening.
My right side is still severely affected by pain and loss of movement and the cold makes it so much worse. You know though I keep smiling through it all, yes I do cry and at the moment rather often but I have to be strong, this is my journey and I can't give up. The light at the end of the tunnel and my rainbow seem so distant lately but if I can survive through this then hopefully they will push closer.
Jarrett went for his run, he had a few little twinges from his injury but he was so pleased to be running again. He will continue to work on his exercises and go for another run tomorrow to see how he goes. He races again on 24th July, so he has time to continue to recover without rushing it, it is also seven weeks until Nationals so hopefully he will be fitting fit and more determined to run the race of his life. Tonight we have a Cross Country meeting that will let us know all about the Nationals in Brisbane in August.
The sun has finally decided to show its face today and it does seem to brighten my heart, tomorrow we are into our second month of Winter and then we only have one more to go before Spring, Spring is about new life and colour so I am hoping that once a change of season comes, it will see my pain ease and I will feel vibrant and full of life, believe me, I am counting the days, hopefully they will come around quickly.
'May everyone find their rainbow and live their world of dreams'
Monday, June 28, 2010
What is pain? In the dictionary it says that pain is physical hurt or discomfort caused by injury or illness, for me pain is part of my life and even though it is very distressing for me, I have to live with it. I wish there was a fairy that could wave her sparkling magic wand and it would suck up all my pain in a stream of stars and leave me feeling like a brand new person, unfortunately that would only occur in a fairytale and my life to date has not been a fairytale at all, in fact I would think it would compare to a horror movie, some days .
I continue to remain as strong and courageous as I can, trying to distract myself from my daily pain in whatever way I can. I played Upwords twice, someone asked me what Upwords is, well it is a little like scrabble where you build words but unlike scrabble you can place letters on top of other letters, I love playing it, it also helps build English skills. I also played Buzz The Big Quiz which is a playstation two game where you have to answer questions playing different types of games using a buzzer and coloured buttons, it is easier than the soccer I did the other day because it is quite easy to do with just one hand. In the afternoon I looked through numerous recipe books to find what culinary delights I could create over the school holidays.
In the afternoon I was excited because we were meeting Tass (my number one salesman) and his wife Gloria (who is also Tess' sister) for afternoon tea at Federation Square. We went to Cafe Injoy where it was lovely and warm, we talked, laughed and drank hot chocolate. One of their daughters Carla came also and she was so lovely. Tass told me about a lady who asked him if I would be interested in painting a canvas to raise money for the new Ronald McDonald House that is being built here in Canberra. They are going to have an auction evening on 28th May next year where it would be auctioned off to raise the money and then it would be given back to hang in Ronald McDonald House. I eagerly agreed to such a wonderful opportunity and even though it will be a larger canvas than any that I have completed before, I know that I will put all my heart and love into painting it, it will be extra special.
I was so fatigued from all my pain, it takes so much out of me and even though I thoroughly enjoyed the afternoon tea, I felt like I had spent all day out. I had my dinner which I found difficult to eat because when I am fatigued I also feel so nauseous as well as I experience headaches. Headaches are not something I am used to because even leading up to my diagnosis, I did not have headaches which often people think you would when you have a brain tumour, I think some people may but I did not. I watched Master Chef and what an interesting twist they presented by bringing back most of the eliminated contestants. I was hoping that Matthew would make it to the final six and have a chance but it was not to be for him, his pancakes just did not make the grade. After Master Chef I went to bed where I lay for hours trying to sleep as the pain just seemed to take over my whole body. As I lay there in pain, I found that my ears were ringing more than they ever have before also and even with light music on in the background it did not ease up. Eventually I must have been so exhausted that I did fall to sleep only to wake three more times during the night with pain, stiffness and a knee that was stuck in the one position.
Today the morning was frosty and bitter cold but the sun forced its way through the cold to shine brilliantly in the sky. However the air has remained so cold it feels like there is still frost all around you. We went grocery shopping today, which I enjoyed gathering ingredients ready for cooking. The shop was cold though, I wonder if their heating was even working or perhaps it had been frozen by the icy frost, my whole body throbbed from the cold with pain and I was relieved I had worn my warm, pink coat in. Poor Mum her hands were cold and she had trouble opening the plastic bags to put the fruit and vegetables in, she kept rubbing her hands together like trying to warm them over a fire.
I have played Upwords again today and I am finding it extremely difficult trying to type this Blog today with my left hand as it seems to have a pins and needles feeling in it as well as a hint of pain. I wanted to ride the exercise bike today but I just could not pedal because my knee was swollen and ached with pain. I have physiotherapy tomorrow, I hope that I can experience some relief again like I had the other day. I am going to watch a DVD and I perhaps try to have forty winks.
'It is not having everything go right, it is facing whatever goes wrong. It is not being without fear, it is having the determination to go on in spite of it.'
Saturday, June 26, 2010
After such a brilliant day on Thursday where I thought perhaps I was heading towards my rainbow the storm came thundering back on Thursday night when I was totally crippled by pain and only had an hours sleep. I think I could describe my pain as like being trapped in narrow walls that keep moving in and crushing you tightly, making you feel like you can not breath. When you are in pain you are often asked to rate it out of ten and for me Thursday night was a definite nine.
Unfortunately even with pain killers, massages and heat the pain still continued with the same intensity throughout the entire day on Friday. I know it is important for me to try to forget about it and get on with my life but when it is so dreadful this is so difficult. I played Upwords, cooked some delicious short bread biscuits especially for Jarrett to cheer him up after his injury and attempted some drawing. Distraction can often help ease pain or rather take your mind off it but my body was not coping, the pain travelled from my right foot, right the way up my weakened right side and into my shoulder which felt like a brick it was so heavy with pain.
We had a visit from Bob, his wife Evelyn and Caleb their Grandson, who by the way was so cute. Bob is a Reverend, he is an extremely kind and caring person, he visited me a few times when I was in Sydney and since I have been at home, he sold a box of my books for me and came to give me the money, he also gave me an inspirational letter from his daughter-in-law Kate. I know that God is travelling this journey beside me, I don't pray for myself but I know many other people do, instead I talk to him wondering how through my journey I can help others.
Tass, my number one salesman called and we are going to meet him and Gloria for afternoon tea on Sunday, he is after another box of books to sell, that will be over two hundred books then that he has sold for me, he is a mega salesman and has a heart of gold.
It was so disappointing that my Wests Tigers lost to the Dragons, they still had a chance at 22-10 but unfortunately the game just slipped away from them. Hopefully the loss will not place them further down the ladder and they can pick up next week and show the strength and courage that I know they have.
My night was restless through pain again, I am not the only one who does not get any sleep, Mum is there by my side when I am suffering holding my hand, stroking my head, massaging my feet, hands, back, knee, shoulders, administering medicine, warming hot water bottles and just comforting me with love.
Today not only can I not use my right hand at all, I have been experiencing pain through my left foot which means that I could not even stand up and in fact when Mum took me to the bathroom I fell and it was just fortunate that Mum caught me. I don't feel sorry for myself that is not the right thing to do, I know that through what I experience it may help other children in the future.
I attempted to play soccer on the playstation with just my left hand, it was frustrating and difficult but with practice, I could not believe it because I actually managed to score a few goals. I was nowhere near as good as what I was prior to my diagnosis but I did it, so it was almost like conquering a mountain for me.
We have had some rather upsetting news about Bill, although he was out of hospital, he was readmitted when he had another seizure. Some more tests revealed that his tumours are so aggressive that they have grown, as well as new tumours appearing in just a short amount of time. They were going to do some radiotherapy for him but he has now being booked into palliative care, that is a place that people whose disease is unable to be treated go to be cared for and live out their lives. I feel so terribly sad, this is what I mean about there is always someone far worse off than you and my problems with pain seem so minor compared to what he is facing. I hope that we can all keep praying for him and his family, maybe there is still the chance of a miracle. I am willing him a rainbow that will shine gloriously in the sky for him and take away his storm.
My pain is still constant and throbbing, I feel exhausted and nauseous but I will remain courageous and strong. I often think that the Vincristine dose should have been reduced when I was having my chemotherapy, getting so much pain and experiencing paralysis but the doctor wanted to keep up the high dosage to try to destroy the tumour. Here I am now having so many difficulties because of it and I still have tumour remaining, it makes you wonder. I think if people are having the chemotherapy that I had then they should question their doctor if they are having lots of muscle problems from it, when it is happening to you at the time you go along with what they say but I think it is okay to question as it is your body it is happening to.
I would like to share some lovely words that were sent to me, these are for those who may be going through a tough time. 'May you receive strength and hope and healing as I hold your hands in love and softly cradle you in my arms of prayer'
Thursday, June 24, 2010
I realised today that I forgot to mention the Wests Tigers fantastic win over the Raiders on the weekend, that is twice they have beaten them this year. I so vividly remember the wonderful day that I had watching them win in their first clash, what an exciting day that was and of course the highlight was meeting the wonderful Benji Marshall, I have my picture frame with the photographs of that day that Mark the camera man gave me hanging ever so proudly over my bed.
Although I have still experienced dreadful pain I have taken on a new totally positive attitude and have set myself a new goal for the next few months and that is to strengthen my upper body so that I can compete in the shotput, javelin and discus at my sports carnival at school on 10th September, I am going to talk to Rhiannon, my terrific physiotherapist and see if she can help me achieve this new goal.
When Nana and Pop left on Tuesday night after dinner, which by the way they absolutely loved my Mars Bar Slice and have since said they wished they could have taken some back with them, well when they left I started to cry, if I could have run, I think I would have run after their car so I could give them another hug. It was a special time having them here with us and I gain strength from having them near me.
Jarrett had physiotherapy to find out exactly what damage he had done when he was racing and he was quite relieved to discover that he has a Grade One Quadriceps strain, he did the right thing by slowing down in the race and it meant that he did not make the injury worse, the injury will take approximately two weeks to recover, he has already started on exercises to help it. He hates not being able to run, it is so frustrating for him because he is so dedicated to it and enjoys it so much. He said he knows how I feel and he is only off for two weeks!
After Jarrett had physiotherapy we went home and I wrote letters and answered emails which I had fallen behind with because of the pain and difficulties I had with my hand, not being able to use it. I spoke to Briana on the telephone, she was so courageous about her surgery and is doing well. Then Nalani had physiotherapy, wow, I think we virtually live at physiotherapy, she has been given the all clear to begin running again which she is pleased about, she is able to compete in the ACT Club Cross Country Championship in two weeks however she will not be at full fitness.
The rest of the day I spent resting, playing Upwords and helping Mum with change of address notifications. Nalani went to school to see what her rankings were for her exams and she was so surprised to find she was top girl of the class in PE and fourth top in Human Movement, she was also in the top fifteen in Maths and did extremely well in English and Psychology. I am so proud of her because it is difficult for siblings of people who have cancer to cope with things too, she is inspirational to me.
Our new oven arrived and was installed today, how exciting, I will now be able to continue with my cooking, I have missed doing it, I think the first thing I will make is some shortbread, I know Jarrett loves it and it will hopefully cheer him up following his injury.
Last night I had a sore throat and the sniffles when I went to bed and it took me ages to fall to sleep between that and the pain that was shooting through my body. However this morning I woke and I felt much better than I had in days, the pain was still there but it was no where near as horrific as it had been. I was amazed and began to think that maybe today was a turning point, a step forward and hopefully I will have some more good days to follow.
When you are in less pain it feels like you are light and full of life so I rode the exercise bike with a new enthusiasm today. I rode for eighteen minutes and twenty seconds and did four kilometres, I felt really proud of my effort today. Next I played Upwords, then Disney Think Fast, watched The Frog Princess again and typed up the footy tips for this week. It was like a new door had been opened today and I was walking through it with my head held high, smiling like a Cheshire Cat.
The School called to say that the sibling of a person in my Grade has chicken pox, so it was decided that I will not go to school tomorrow, just in case there is a chance I come in contact with it. We also had our meeting with the Head of Middle School Curriculum today and we discussed next Term. Not having my hearing aid tomorrow so I can get used to it is a drawback as now not getting it until 30th July means I will have to get used to it whilst at school. I am going to do a Monday afternoon to do double English every second week and a Thursday afternoon to do PE and Integrated Studies every second week. I am hoping that I will be able to cope with this and if I can then we can extend some other days perhaps later on in the Term. At school they sold fifty four of my books so that is more money we have raised for Brain Tumour Research.
My peripheral neuropathy is still causing problems but I guess as each day goes by it is just something that I have to adjust to and learn to live with and I know that as part of it I will have good days and bad days and it is important for me to really make the most of the good ones.
'I believe that everyone is a special star that shines, but how brightly we shine depends on how beautiful we are on the inside'
Tuesday, June 22, 2010
On the day which was my Nana's actual 70th Birthday which also happens to be the day with the shortest daylight hours, I was in horrendous pain. The night before I had hardly slept because of the intensity of the pain and I felt so dreadfully ill and tired. I was supposed to go to school but even though I tried to be determined I just could not. The tears flowed freely and I just so desperately wanted it all to be taken away. I went back to bed and slept for a little longer, my pain still took control of my body. Nalani was sick, she had to go to the doctors, she was diagnosed with a sinus infection and was put on antibiotics. I wish my problem could be so easily treated.
I played Upwords to try to take my mind off the pain and my miserable mood. My Nana and Pop came over and we watched Herbie Fully Loaded together, I found myself dozing off throughout the movie, it was actually good to be relaxed. My pain eased off a little but returned with a vengeance in the evening which there seems to be the pattern for me and that is why I am so sleep deprived. The doctors in Sydney had mentioned taking stronger pain killers and this may have to be an option that I consider just to try to have some decent nights rest.
We spoke to Australian Hearing and my appointment to get my hearing aid on Friday has to be postponed until 30th July because my oncologist forgot to send them the letter before he went away to his conference. I am seeing my paediatrician who returns from his holiday on 12th July so I know that he will do the letter for me and I will be able to then hear in my right ear a little better with the help of the hearing aid. I am so disappointed that I have to wait for another month, my hearing is something that is so frustrating and makes it difficult for me at school to learn.
I had a bit of a runny nose last night so I hope I am not coming down with anything too sinister, that is all I need now. This morning was so overcast and looked like it would most likely rain. Today was the day that Jarrett was running in the ACT Schools Cross Country race at Stromlo Forest Park. The weather improved and the sun even started to peep through the thick clouds when it was time to leave to get to Stromlo. As we headed towards South Canberra the sun was fully out and it looked like the perfect day to run cross country. We watched a few races before, I saw some of my friends from school running and cheered them on, I had hoped this year to have been there at ACT Cross Country running against them but unfortunately that was not to be.
It was then time for Jarrett's race and the clouds had started to cover the sky again making it rather chilly and even though I was extremely rugged up I could feel my bones ache and that brought on my pain. I was so excited though to see Jarrett run and from the start he led the race, he had it all planned, in the second lap he would take off and demolish the field but tragedy struck and coming round the bend into the second lap he felt his thigh go heavy so he had to back off because when he tried to push he could feel a throbbing pain, he continued running but was unfortunately overtaken part way through the second lap, he was determined and showed courage and finished second which was fantastic. I am so proud of him, he runs so well and he did not deserve to get an injury. At the moment we are all feeling very much like nothing seems to go right for us and that our lives are just full of bad luck.
Jarrett will have physiotherapy tomorrow to find out exactly how much damage he has done, he is supposed to be running in a point score event on Saturday and then at the Club Championships the following Saturday.
Nana and Pop are coming over for dinner tonight before they fly home tomorrow, I have made a special desert for them, mars bar slice, I wanted to make them something delicious before they went home. I think they will be glad to go home to the warmer weather and their little dog Chifley.
'Life goes on and tomorrow is a new day and hopefully we may all see a rainbow shinning on our lives in the very near future.'
Sunday, June 20, 2010
We were blessed with lovely weather for our weekend which was a pleasant surprise and I think Nana and Pop must have brought the sunshine from Queensland with them to brighten our days here in Canberra.
Saturday whilst Dad worked in our garden I played Upwords and did Sudoku puzzles these take my mind off my pain for a while which just won't seem to cease no matter what I do. I would be shocked not to be in pain, I wonder if everyone who has been through what I have has to suffer with this atrocious pain.
Nana and Pop came and spent some time with us for the rest of the day and they showed me their photographs of their holiday to New Zealand, it looked so exciting and beautiful, they had a fantastic time. I needed to have a rest in the afternoon as I was feeling really worn out, trying to listen to conversation tires me. I needed to rest because we were having dinner with Nana and Pop that night at Figaro. We had a lovely dinner, the food was rich but delicious, my sensitive little stomach could not handle too much of it though. We gave Nana her Birthday gift, she loves earrings so we bought her gorgeous 9ct gold sapphire earrings that were so delicate and sparkling. I also gave her a very special gift from me, that was a canvas painting I did with a path, it said "Sometimes our path in life is unpredictable and challenging, if we don't travel this path we would not discover our true self".
I received a lovely gift and a meaningful card from a lady at my Uncle James' work, her name is Vicky and she gave me a fairy with a little quote, it says "Once you choose hope anything is possible. Learn from yesterday, live for today, hope for tomorrow." I think those words are so true and I have them sitting on my tall boy where I can see them every day when I awaken.
Today could be described as the ultimate winter's day in Canberra, the sun shone ever so brightly and strongly in the sky and the air was much warmer than it had been. You would think that such marvellous weather would alleviate my pain, unfortunately it did not but it did put a huge smile on my face because I love the sun, it is like everyone in heaven is smiling down on us.
My right foot feels like it is all being pulled up at the heel and then the front and my toes feel like they just droop and I can not stand on it at all, let alone attempt to walk. This is part of the peripheral neuropathy which also affects my right hand, some days it is much worse than others and today was one of those days.
Jarrett needed new running shoes, he goes through his so quickly, that is because he is running so many kilometres in them every week so we had to go to Belconnen to get them from Athletes Foot. While we were there I saw that the Disney movie The Princess and the Frog was out, I had some of my Birthday money left and I bought it. When we came home I watched it, it is a really terrific family movie.
Great news is that the owner of our property came over and measured for an oven, he then called us and told us that we would be getting a brand new one on Wednesday, I can hardly wait because then I will be able to do lots of cooking, just in time for the school holidays which begin on Friday, we have three weeks holidays which is a real bonus.
I am trying to think of new ways to raise funds for the Brain Tumour Fund, I think summer is a much better time to do activities in Canberra so I hope that I can come up with a few ideas for then, it would be magical if I could raise double what I already have before the end of the year.
Please keep Bill in your prayers this week and also a friend of mine, Briana who is having surgery at Sydney Children's Hospital on 22nd June on her legs.
Friday, June 18, 2010
Thursday we had the most inclement weather with heavy rain and powerful winds I was so relieved that I was not going to school. Even in our lovely warm home I still suffered with severe pain throughout the day and as the weather was so dismal I could retreat to my lovely sunny spot to warm my aching bones.
In the morning whilst I was awaiting the arrival of some special visitors I amused myself with a game of Upwords. I did not have long to wait until the people who I love so dearly and who make my smile dazzle like the brightest evening star arrived - my Nana and Pop. They flew down from Queensland to spend some precious time with the family as that was my Nana's wish for her 70th Birthday. Their cuddles cheered me up and seemed to wash all my pain away for a short moment. They spent the day with us sharing memorable conversation, then at lunchtime we went to school to hear Nalani sing. As we walked it began it rain and even though I was rugged up and had my Barbie umbrella the cold made my bones throb like never before. Finally we reached the shelter of school, we made it just in time to hear Nalani sing in her angelic, gentle voice her song she had written herself for Mr Foulcher the Head of Senior School who is leaving on the adventure of a lifetime to write poetry in Paris. Her song is full of meaning and the tune is very catchy I was so proud to be there to hear her and I know that Nana and Pop were too. We heard some other amazing singers also then left to return home where I knew my aching bones could be warmed. Today I could not use my right hand at all and my foot was so painful even touching it on the ground sent shooting pains up my whole right side.
During the night I woke several times crying because the pain was so intense and there was nothing Mum or I could do to ease it, even heat did not seem to be helpful. Today I had school and even though I could have easily opted to let my pain stop me from going, I chose to go after having pain killers. At school I had Integrated Studies first, the class are doing a project on Ancient Egypt and they can chose what they would like to present, some are doing housing, others clothing and some the Egyptian Gods. I flipped through some books trying to decide what I should do but with my pain pulsating through my body I could not really focus on it. We then had double science, my teacher loves science and is always so enthusiastic about presenting what we have to do. Today the class were making silly putty. You can imagine all the cheers of excitement when they found out this is what we would be doing. We used beakers with PVA glue just covering the bottom, added a little water to that and stirred it, then we chose a food colouring colour for it but we were warned not to use too much especially of blue as our hands would remained coloured for a few days, the teacher then added some borax which is a soapy like solution to it and we had to mix it. The mixture became sticky and we had to then wring it out like washing and then mould it in our hands. I was unable to mould it because my hands are too weak and today I could not use my right hand for anything, so Mum got to have a play with it. Unfortunately, perhaps because of the cold weather or it could have been Mum's cold hands ours did not work out but we were not the only ones. Even though the teacher warned people about adding too much food colouring there were several people who were walking around with green and blue hands.
I was so glad when it was time for recess as I felt so debilitated with my pain and I just wanted to have some more pain killers, cuddle up under a snugly, warm blanket and have a soothing cup of tea. I found my sunny spot in the house and sat and cried with my pain, you don't always have to be brave when you are in so much pain and it is okay to cry. I felt relieved after I had a cry and even though the pain still ripped through me I could cope better.
We had a house inspection today at lunch time and she thought we kept our house beautifully, there has been some confusion about our oven, as she thought the owner was going to buy a new one so the electrician was cancelled. We do not know now how long it will be until we have an oven to cook in. I hope it won't be too long as I love cooking, it is almost like a form of therapy and I am anxious to cook some short bread, muffins and vegetable slice. I had been hoping to cook my Nana an extra special cake for her birthday but I don't think that is going to happen.
We planted some roses in the garden and I chose one to be my special one, it is called Cinderella and it is a fragrant, pink rose I can hardly wait for Spring to see it bloom. I wanted to finish off my last painting, once again my right hand just could not grip anything and the paintbrush just kept falling out, so I used my left hand again. You can't give up, you have to try and try again and if that does not work you look for a different solution and that is what I have done by using my left hand.
It has been extremely slow typing my Blog today and as I come to an end my throat is tight and I have a little tear trickling out of my right eye down my soft cheek. Tomorrow hopefully will bring more sunshine in my life but if it doesn't I will just soldier on the best way I can with determination.
Some interesting news from today is that a libray in Singapore are interested in purchasing my book, world interest, I am so touched and honoured to think that I might just yet reach that dream of having my book read by everyone in Australia as well as all around the World.
'Love your family and friends with your entire being because they are the most important part of your life'
Wednesday, June 16, 2010
Canberra winter mornings are so icy cold yet they can be the most beautiful to look at with snow white frost covering the grounds and grass that crunches under your feet when you walk on it, this may sound strange but I wish I could walk on that grass and hear it crackle under my feet, I am sure it would make my bones ache but it is something I would love to experience again. It is the little things in life like that we all need to take the time to appreciate.
Yesterday was a typical winter morning here in Canberra and when you take in the cold air you do appreciate life even in its coldest moments. I was anxiously waiting to see Rhiannon for my physiotherapy appointment, I knew that she would loosen those tight muscles of mine. Seeing Rhiannon did brighten my day because she was able to work on my muscles and then she did some tests that were required to fill in the form for my classification as a disabled athlete, she understands how important being able to participate in sport is for me. We also discussed my peripheral neuropathy and how we can work together to manage it. I will continue to see Rhiannon every two weeks and work on my program at home that has been set for me. I have used Voltaren on my knee but it does not make any difference, it is just like using deep heat, the physiotherapist in Sydney had thought it would make the world of difference but it has just been another let down.
I came home and rested taking the day quietly until the afternoon when it was running training. Although the sun was shining in the late afternoon sky, it was chilly, so I am not able to go for a walk in my wheelchair like I can in the warmer weather. It was dark by the end of training and when Mum went to start the car all it did was make a noise almost like a machine gun. She tried again and again but nothing happened. Even Jarrett who reckoned he had the magic touch, turned the key and it did exactly the same thing. Mum called the NRMA and we had over an hour wait before they could come and fix it. The car was fogging up as our warm breaths filled the car. Finally the NRMA came, got the car started, told us it was the battery which was the original one, not bad as it was five years old. The NRMA battery people came later that night to replace our old, worn out battery with a brand new one, so we should not have any of these problems for a few years. We had to laugh though, at the moment it seems like only these things could happen to us. I am sure they don't but at times it feels like we have just had a run of the worst luck possible.
I was extremely sore when I went to bed last night and woke several times throughout the night again, but as I have said before this is normal for me and to have a great night sleep would be a miracle.
This morning I awoke still in pain and our run of bad luck continued from the night before with a few minor setbacks prior to going to school. I was excited because today was elective day, my elective is art and this is only the second time I have been able to go to that class this term. Before art though we have our class roll marked and Insight. Today the teacher was talking about Bullying and the difference between friends just having a disagreement and real bullying which I have experienced and know what it is all about. It is the continual harassment by one person or a group of people against a person or people, it can be verbal, physical or psychological. Today the teacher mentioned Cyber bullying and how people are using Face Book, MSN and BeBo to write nasty messages to or about other people and it seems to mostly be girls. People who bully just do it as a form of power and it is terrible what they can do to the person they are bullying. I wish there was no such thing in our World as bullying and it makes me feel so upset to think that people at school would even think of doing it. I hope that from now on people use technology and only write kind words about other people, maybe they should all set themselves a goal of saying one nice thing a day.
It was then time for art, today in art we were working on another ink printing, I had to choose a person or character who was famous and inspired me. I tried to do a sketch of Matt Preston but it just did not turn out and it looked too feminine. I drew a sketch of my oncologist and that looked fantastic, it was so life like but I decided not to do that one, I then drew Theodore but to have it life like it was a little too difficult with all his fur. Finally I decided on Belle from Beauty and the Beast because she inspires me with her kindness and empathy, she is different to other people and is so helpful to others. I drew her on some foam and then went over the lines so they were indented, this is how the print works. Once I was happy with my tile, I then rolled the pink ink I had chosen all over the foam. I then took a piece of paper and pressed my print onto it, it turned out magnificently, I repeated the process and ended up making six prints altogether. Next week is our last lesson of art because next Semester we have new electives.
After my tiring morning at school I left to go home, have a rest and a warm drink. We then had to take Nalani to physiotherapy for her knee. Whilst at physiotherapy, Rhiannon gave me the forms she had completed for my classification for a disabled athlete, I just have to get the one from my neurologist and I can then send it off for the association to review. Nalani's knee is slowly recovering but she won't be able to race at the ACT Schools Cross Country on Tuesday. Hopefully she will have recovered more fully for the Club ACT Cross Country Championships in July.
I have been taking the rest of the day quietly as I am still experiencing uncomfortable pain all down my right side. The skies have clouded over and I am so pleased to be in our warm home, tomorrow it is supposed to be very windy with some showers, so I am glad that I don't have school.
Monday, June 14, 2010
With the thick, white, glacial frost covering the lawn and freezing the water in the bird bath I needed to wrap myself up snugly for running training, I think I ended up with five layers. Whilst Jarrett went for his long run up Black Mountain we went for our usual walk around the AIS. The suns rays shone and made the frost covered grass glisten like diamonds as the warmth melted the icy frost, it also warmed my tortured bones but they still throbbed with pain. The waves frolicking along Coogee Beach had given me a peaceful feeling but taking in the sensational bush views in Canberra also give you that feeling of freedom, peace and tranquility.
After running training we returned home and I found the most wonderful spot in the house to sit, in the family room with the sun streaming through the glass sliding doors, it was here that I sat and painted my canvases. I could not paint with my right hand, I had it sitting on a hot water bottle to try to warm it, I could not hold anything in it or bend my fingers without having bolting shots of pain run from my hand up my arm so I used my left hand instead and I have become reasonably expert using it. Each painting I create is unique and original so using my left hand makes it even more special. After using my left hand to paint however I found that it was also causing me some problems, this is because of my peripheral neuropathy and it can occur on both sides but my right side is more damaged by it.
Whenever I am feeling a little down and defeated I do activities that I enjoy or can be distracted by, so I played Upwords. I began to feel extremely fatigued and think this is because of the pain and also after my huge week in Sydney, so I rested, letting my body relax and my eyes closed as I drifted off into a light slumber. Rest helps the body to recover and I awoke feeling refreshed and revitalised.
Close to dinner time my pain returned at an agonising level and I actually cried because I just could not cope with it no matter what Mum tried to alleviate it. Then I pulled myself together, took a deep, long breath and chastised myself for letting it get the better of me. After dinner I watched MasterChef, I felt so sorry for Callum when he broke down because his Chicko Roll interpretation did not work out. The pressure seemed to have got the better of him and I willed him to be strong. It is not always easy to be strong it is something you have to really work on but with strength comes courage and optimism.
Lying in my warm bed I felt comforted even though I was still suffering and I prayed for all the people who were in pain at this time and I said a very special prayer for Bill, I am sending him my rainbow to touch his heart and give him hope.
I experienced yet another restless night sleep with pain and joints locking but I still try to always wake smiling because a smile gives you sunshine in your heart for the rest of the day. I found my lovely, warm, sunny position in the family room again this morning and played Upwords again to warm my brain up for the day ahead.
It was another freezing morning, minus five degrees with a thick, white frost covering the ground, when the day warmed up a little we went to the shops, where I finally had my ears pierced. It has been what seems like forever but it finally could happen today. I chose sterling silver, pink (which I am sure you would have all guessed) earrings. The girl was so lovely and gentle and I did not feel a thing, it was all over in no time. So I now proudly have my ears done which I had saved my Birthday money from February to pay for it. I have to keep them in for six weeks, using an antiseptic spray regularly and also turning them often throughout the day. I love how they look and I really appreciate being able to have them done. I think when you have been through what I have, you do tend to appreciate all the wonderful little opportunities that life offers you, things that other people just expect or take for granted.
Ouch! My hand is pounding with pain, I have tried to type this using my right hand a little but I just can't do it, typing one handed will have to do for now. I have heard about people who have no arms at all and they don't sit back and say "I can't" they use their feet to be their hands. I draw inspiration from the fact that there are people who are less fortunate than I am and I should never feel sorry for myself.
I watched 101 Dalmatians today, the old Disney movies have some marvellous characters in them. I have physiotherapy tomorrow and then will return to school on Wednesday which I am excited about as I have art, I have only had one lesson of it all Term due to camp and NAPLAN. Anyway, as my right eye is flickering away and I have the beginnings of a headache, I think I am becoming quite fatigued again, probably from the pain I will have to rest.
Please remember to pray for Bill and his family this week, I am hoping for a miracle for them and the power of many prayers may do this.
Saturday, June 12, 2010
To end my week in Sydney, it was like Friday was a day that was designed to brighten my spirits and warm my heart. Looking out at the clear blue ocean with the frothy white waves making their way onto the sand I thought of what the week had brought. I had found out that I had Peripheral Neuropathy, my MRI showed enlargement of my tumour but it remains stable which I have now found out means that it is not spreading rapidly again at this stage, I also have some new enhancements on the brain, my spine remains enhanced but their are no cancer cells there at present. I still have not heard about my blood results so I assume I will receive them next week. I have continued to inspire, raise awareness, help others and raise funds.
In the morning after enjoying a stroll along the beach front we met with Leanne the Manager of the Crowne Plaza and spoke to her, she was so lovely and is another person who has a honest, caring and generous heart. Having somewhere so splendid to stay out during these stressful times really lifted my spirits and I was able to reflect in a more positive way what had happened during the week. I gave her a signed copy of my book which she was thrilled to receive and she took ten more to share among staff. I sold all eighteen books that I took to Sydney with me.
I was going to meet up with a friend but they were sick so we did some shopping at Westfield East Gardens, I had thought of having my ears pierced while I was there but I changed my mind and decided to wait until I came back home to familiar surroundings and people. How funny is that, when you can finally do something that you really wanted it becomes less important than you thought it was at first.
One more stroll along the beach front in the late afternoon when the weather was still warm ended the day in a perfect way. I wished that everyday I could feel as calm and peaceful as I did yesterday, even though I was still suffering from constant pain, the atmosphere seemed to help my body relax and help the pain.
My night was disturbed by pain and a headache that made me feel so dreadfully ill as well as like my head was perhaps the size of a watermelon. With pain relief it gradually disappeared but the next thing I knew the alarm was beeping to signal it was time to wake up and ready myself to leave to fly home. Leaving Sydney I still feel that there are so many more challenges that I am going to have to face until the next visit but I know that I will still remain strong and continue to believe that each day is so glorious and like opening the most beautiful gift imaginable. The traffic was extremely light to the airport but the airport terminal was a flurry of activity. Finally we were able to check our bags in and go for a stroll around the airport before going to the departure gate to await our call to board the plane. Once again we were the first passengers on and before too long it was time to taxi to take off, there were delays on the runway so we sat there for quite a while and finally had clearance to take off. The flight was terrific it was a clear sky and I had a window seat and was able to look out at the soft, fluffy white clouds. Sydney to Canberra is such a short flight and before I knew it they were announcing we were descending into Canberra. We had the perfect landing, Mum did not have to put on her pretend brakes this time. Jarrett was a little spoilt and got to sit in premium economy so had heaps of leg room. On landing they announced that it was seven degrees at the present time and this was at lunch time! I shivered as I thought how cold that was compared to our last week in Sydney. We were last off the plane and walked into the airport to see Nalani and Dad who welcomed us home with hugs.
When I walked in the door at home I could hardly wait to hug Tinkerbelle and she cuddled me back. After unpacking we talked about the fun things that we had done in Sydney like the WS FM interview, dinner with Gavin and lunch with the Focus Creative Team and Tess. I was so fortunate to have some really special and fun memories from this visit, it helps take away the stress of the medical news that came my way.
Canberra is so freezing to me even with the winter sun shinning the air is just like standing in a freezer. I will have to get used to this type of temperatures again. My bones are aching and even though I have wrapped myself up I am still feeling it dreadfully.
I had some letters waiting for me and a special gift from Neah and her family, a cousin with a butterfly and my name on it and a little box also with a butterfly, they know I love butterflies. Jarrett also had a surprise he received a birthday card from Steve Ovett who is one of the World's greatest middle distance runner, he is an Olympic Gold Medalist and six times world record holder, Jarrett was thrilled and it will inspire him in his running.
'In the garden of life, smiles can grow and dreams can blossom when there is kindness and happiness to shine upon us'
Thursday, June 10, 2010
On a sunny, crystal clear Sydney morning we went to the beach for Jarrett to run, whilst Jarrett was running Mum and I went for a walk, then sat with the sun shining on us and taking in the breathtaking views across the deep blue ocean. It would be so fantastic if every single day I could have the warm and glorious feeling I had at that moment.
Today was a day I had been looking forward to because I was having lunch with the Focus Creative team and the terrific Tess. Tess pick us up from the motel and chauffeured us to their office in Paddington, there are so many historic buildings in the area which I found was quaint. Gavin came and swept me off my feet to carry me up the stairs to their office, I was introduced to Carlos who runs the business, he has also been involved in my book, he is a really wonderful person. I then met the lovely Tanya, I was excited to see the familiar smiling faces of Paul and Ben and I really loved seeing where these amazing people do their work.
They decided to take us to an elegant, upmarket Pub in Paddington for lunch, unfortunately Paul was unable to join us because he had to go back to work. The food was fresh and delicious even though I only had chips, we laughed, we talked and had a splendiferous time. On the way back to their office we called into a unique cafe for coffee and hot chocolate, it was here that Ben took a piece of basil out of his shoe which he had put in a lunch time, and he ate it! It was part of a bet with Tanya, he won ten dollars for it. I don't think anyone else should attempt this! Then when he had his coffee he was trying to drink it without the pattern in the froth getting wrecked, he did a magnificent job doing this. It was almost three o'clock when I sadly had to say farewell to them all, I had a marvellous time with them. Tess dropped us back at the motel and I gave her a huge goodbye hug.
Gavin lent us his collection of the Simpsons DVDs to keep me laughing and told me not to return them until I have watched them all. I know that every time I watch one of them I will think of how Gavin always makes me happy.
As we had not received my results from my lumbar puncture, MRI and blood test we had to call the hospital to get them, then had to wait for them to get back to us. My MRI preliminary result shows that the remaining tumour has enlarged but remains stable, there is no recurrence in the cerebellum but there are two new enhancements in the area. My spine enhancement has remained stable from last time and the lumbar puncture indicates no cancer cells but the enhancement is most likely seeding which has to be closely monitored as it is the beginning of cancer cells. Not all my blood results are back and we will be contacted by the Endocrine doctor for in depth details on these either tomorrow or early next week. They are highly concerned over my weight and if it decreases too drastically or I become ill I will need to see a doctor immediately. One of the side effects from having the radiotherapy and the chemotherapy at such high doses is a high risk of secondary cancer so more examinations may be required prior to my return to Sydney in September.
My hope was that my news in Sydney would be good news and I guess in the back of my mind I would love to hear that all the tumour was gone but considering the severity of my tumour I guess I should appreciate that I am still here to be able to inspire others and keep raising that awareness and funds.
Bill, who I told you about in my last Blog was released from hospital and is now home with his family, they meet with specialists next week, so extra prayers would be greatly appreciated. I have always said there is always someone worse off than you and even though I am disappointed with my results and new diagnosis, I feel like I am the luckiest girl alive compared to him.
The WS FM interview with Amanda and Jonesy went to air but they decided that it would make more impact by them telling the story, so the part that I recorded was not in it, but they used what I said themselves to help promote my book. I hope that this will be sucessful and that having celebrities of their status talking about my book will encourage everyone in Sydney to buy my book. I am a little disappointed that this is what they decided but it is not about me being on the media it is about raising the highest possible awareness and funds to save other children's lives and to continue to inspire and touch as many people's lives as I possibly can in the time that God gives me.
I still remain in pain especially in my knee, I am fortunate the weather here has now been kind to us but I worry about the freezing cold weather back home and the effect it will continue to have on my pain and my ability to cope with it, it is not always easy to have this constant pain but I try to put it in the back of my mind and focus on as many positive thoughts as I can, however the pain is always there.
Thank you again to everyone who has been sharing their positive and encouraging thoughts with me, you have truly helped me each and every day on this journey.
Wednesday, June 9, 2010
What is it like to have a night where you sleep the whole night through? I would not know anymore, every night I wake in pain and last night was no exception. After all the examinations yesterday my right knee throbbed constantly with the most excruciating pain I have ever felt and it was so huge, then I could not even bend or straighten it properly. It was not just my knee that drove me to tears, the pain ran up from my ankle and into my bony little hip, the pain was so intense that it made that whole side feel numb and heavy. To cap it all off, I had a headache that made me feel quite dizzy, this can occur after a lumbar puncture but I have never had it happen before.
The skies were overcast and the clouds floated quickly as the wind carried them through the sky, fortunately they cleared and it was a glorious winters day with only a hint of chill in the wind. People were even sun baking on the Coogee Beach around mid morning.
I had to do a stool sample this morning which is not the easiest thing to manage. Mum had gloves and a container to work with and coped amazingly well, nursing may be a career in the future for her with all this experience she is gaining! Jarrett however just thought it was all too gross. We made our way up to SEALS to have my blood tests. It was crowded and surprisingly most of those waiting for blood to be taken were children. Finally after a long, boring wait I was called in. They had to get ice to put one of the tubes in because it had to be kept cold. There were six vials to be filled with my blood. These tests had to be taken from my vein which I actually don't mind at all. The blood nurse told me I was a great patient and she loved my beautiful smile. Some of the tests will take a couple of days for results to come through.
I still have no results for my lumbar puncture or MRI so I am hoping that no news means good news. Keeping positive has been the most important thing throughout this journey if I was not then every little challenge would have seemed like a huge mountain that I would never be able to climb.
We then met with Janine from the Sydney Children's Hospital Foundation, we talked about my book which she was amazed by. She is keen to promote it on the Foundations Website and hopes that by doing that then it would increase sales. She is going to send some information to my teacher about the Brain Tumour Fund to help with the Walk-a-Thon that is going to take place next Term in Week 5 and then she asked us to make a comment about The Sydney Children's Hospital to be placed in an article in the Canberra Times that is being done. The Sydney Children's Hospital at Randwick as part of Gold Week are having a telethon on Channel Nine on Friday and they have asked me if I can be at the hospital that morning so that a cross could be done and they could talk about my book.
After our time with Janine it was then time to go and have a weight and measure done for Endocrine. My height was checked five times because since my last measure I have shrunk, perhaps it is due to the curvature of my spine or a side effect from the radiotherapy but the height difference was 1.2cm. My weight was also checked and as it has been noted by other doctors it has gone down slightly again. In fact it is lower than what it was on completion of my chemotherapy, obviously they are concerned about this. They will check me further in September when we are due back.
We ran into a Mum, Maria who we met in Ronald McDonald House last year. Her little boy Alex has had transplants and even though he is now disease free,he has had some complications from the transplants in the form of viral infections. They have now been in Sydney for ten months, that is a month longer than we were in Sydney. She bought one of my books and thought that it was fantastic and was going to spread the word.
We walked back down the hill to Coogee, Jarrett went for a run while I had lovely warm shower as my pain was still unbearable and making me ill. I am having a rest so that I will be ready to have dinner with Gavin.
We had some terrible news about a member of the family, a Cousins husband who lives in Queensland, he was driving a truck for work, he had a seizure and crashed. He was taken to hospital for tests, there are no serious injuries from the accident however it has been discovered that he has three inoperable tumours on his brain, cancer in his lungs and liver, he can not be treated and has only been given months to live, he is only 52, it is so sad and I would like to ask everyone to pray for him and his family.
See how fragile and precious life is and how we really do need to make the most of every single day and realise that life is far more important than money, work, things like exams or being popular. Life is a marvellous gift and we really need to treasure it.
Dinner with the magnificent Gavin was so much fun, he is such a wonderful person, he always lifts my spirits and makes me feel special, it was disappointing that Gill was unable to make it due to work. I was able to see his new car 'Hercules' which I named for him, it is a smart car, they are really not much bigger than my wheelchair, so it had to have a name to make it seem a bit tougher and larger, he told me not to laugh at it but I have to admit I did have a chuckle. I am so looking forward now to lunch tomorrow with the Focus Creative Team, Paul and Tess these people are the most genuine, caring and determined peopl. I feel extraorindarly blessed to have met them on my journey, I would compare them to the pot of gold at the end of a rainbow, true treasures.
We also saw Janine when we were having dinner and she let me know that Channel Nine are unable to cross live to the hospital during the morning, so even though it would have been wonderful to be able to share my story, it is not possible.
With some disappointing news though came some splendiferous news and that was from Tess, Womans Day contacted her after Amanda had given her a contact there and they would love to do an article on my story in their magazine. This is huge, incredible and exciting, Womans Day is sold all around Australia, this means that through this story more interest will be generated around Australia, hopefully meaning being able to reach out and touch more people then in turn more funds raised for Brain Tumour Research. This is like a rosebud that starts tightly closed and then with sunlight and water gradually opens into a beautiful rose.
Tuesday, June 8, 2010
To wake to the sun shinning in the balcony window and the surf rolling gently onto the soft sandy beach gave me hope for a glorious day with many positives. When we left our room to go for a walk along the beach front paths while Jarrett did his running training we found the clear sunny sky was deceiving as there was such a winter chill to the air, it was almost like being at home in Canberra. We overheard some people say that it must be snowing somewhere and I thought of the majestic mountains at home covered with a white cap of soft, cold snow.
As the sun shone more brightly the air warmed so we decided to walk from Coogee up to Randwick for my appointments. It is extremely hilly around the area and I am sure Mum had a massive workout today. My first appointment was with Judy the physiotherapist, she asked me a series of questions about how I was doing and then had me walk a little which although painful I gathered strength and did. She then had me walk along a line which I failed miserably as I just continually off balanced. She would like me to continue setting myself small, achievable goals which I will attempt with my usual determination and courage. She also spoke to my oncologist who has now given the all clear for me to use Voltaren Gel on my knee, ankle, hip and spine for pain and swelling.
Following my physiotherapy review I then had oncology clinic, I had to wait as it is always so busy on these days. My oncologists new registrar checked me over thoroughly first and asked me a series of questions about how I am feeling and what I am doing. Then after my oncologist was doing an interview with Channel Nine which should be on television on Friday he came and saw me. He told me that I am now able to stop taking Bactrim once the bottle I am on is finished but I still have to be careful if I fall ill and have to see the doctor straight away. My results are not through from my MRI as they need to look more closely at them but he said he will contact us as soon as he is informed of the results. He talked about school, my mobility and my book. He is not sure that a hearing aid will help me hear much more clearer without also having a amplifier, he is proud of how I am coping with all that is happening to me. He has been doing research into better treatment for Medulloblastoma and they have had some success with mice in laboratory tests but it is a long way off being tested on humans. He said it is because of people like me who are raising funds that this research can occur and then in the future children will not have to face the same side effects as I have had to endure and maybe even closer to finding an eventual cure.
I was given information about my peripheral neuropathy, it is damage to the peripheral nerves which are the nerves outside the brain or spinal cord. Even though I feel so much discomfort in my muscles and joints the real damage is actually to the nerves that control the muscles. These nerves are made up of special cells that carry messages to and from the brain and spinal cord. Damage to the nerve is often caused by a breakdown of the myelin sheath that is the coating around nerve fibres that act as electrical insulators. There is also direct damage to the nerve cells from the pressure of the tumour. There is no treatment that can cure or reverse nerve damage but treatment is directed towards symptom management. I need to keep the areas warm as weather changes will affect it. There are prescribed medications to control the pain and tingling but they have side effects of their own. So this condition is yet another part of my every day life and I have to learn to cope and live with it.
It was realised that I had not been given blood forms and I should have been, so I had to go from that appointment to have bloods taken urgently before my lumbar puncture. I went to SEALS and had a finger prick test done, I knew my platelets must all be back to normal as it did not flow easily and it also began to clot part way through it.
The day was flying by and because oncology clinic had taken a while and I had to have bloods, I had missed my Occupational Therapy review, however Renee came and visited me on the ward before my lumbar puncture. She went over some techniques I can use to assist with my peripheral neuropathy including in cold weather when having a shower not going directly into a hot shower but rather gradually warm it. Some fingerless gloves will help my hand also and I should wear them even at school during the colder months. My knee, hip and ankle are a little more difficult to assist but the electric blanket and thermal wear are a start.
Liz is involved in a project to raise funds for The Brain Tumour Rehabilitation Program. It is a CD called The Skat Kats and they are family and friends of babies and children being treated for Brain Tumours along with Celebrity guests and cancer survivors themselves. You can read more about it at http://www.skatkats.com/. I was fortunate enough to be given a copy of the CD and hope other people will also support this project.
I gave Liz, my Oncologist and Judy my physiotherapist copies of my book, although I should have asked my oncologist Dr David for my gold medal he had promised for not being admitted to hospital during my chemotherapy for a temperature before I gave him his copy!
I felt so nervous waiting in the ward for my lumbar puncture, although I am under anaesthetic when they perform this procedure it is very uncomfortable afterwards. It was finally my turn, Mum and Theodore came into the operating theatre with me, Mum had to leave once I fell asleep but Theodore as always, stayed. I was given gas to put me to sleep first and I drifted off hearing the anesthetist comment I was smiling and so happy. I woke up in recovery had some observations done and then I was taken back to the ward where Mum and Jarrett were anxiously waiting for me, I smiled at them and they both gave me a hug and Mum gave me a kiss that Gavin had sent to me, he had rung while I was in theatre.
After having a lumbar puncture you have to wait for a least an hour prior to being discharged. While I was waiting the Endocrine Doctor whose appointment I was unable to attend because my lumbar puncture was being done at the time, came to see me on the ward. She wanted me to have some blood tests tomorrow, when I was given the blood form, it is two pages of different blood tests, I also have to do a stool sample to be tested. They are checking my thyroid function, hormones, cortisol, iron, Vitamin D and antibodies. There is also talk about me having an endoscopy to check internally to see if everything is functioning correctly inside my stomach. She was talking about me having growth hormone replacement looked at next time I am in Sydney as my growth has plateaued, they will also look at estrogen patches at this time also to bring on puberty. I sometimes feel like this is just never going to end, I know I am not like any other normal twelve year old girl but I wish I was when I hear all these things.
Finally, I was given the all clear to leave the hospital and return to the Crowne Plaza, it was dinner time. My spine is a little sore now and my knee, ankle, buttocks and spine are so painful, I am hoping to have a decent night sleep ready for my day tomorrow, I have a blood test, Endocrine measurements and we are meeting with Janine from the Sydney Children's Hospital Foundation.
I am still feeling anxious about my MRI and lumbar puncture results and now with the blood tests I have to have tomorrow I am a little concerned what may show in those results. This may sound strange but one positive from today is that I can have my ears pierced now, this may seem something silly to be excited about but in my life of so many lows it is a huge high.
It does not take one star to fill the evening sky, it takes millions. One person can have a dream and it can become a reality with the generosity of many and replicate that evening sky.
Thank you to everyone who has been writing beautiful messages of support to me, I truly appreciate them they keep my hopes high.
Monday, June 7, 2010
I fell asleep last night to the soothing sounds of the waves rolling into Coogee Beach, I needed a decent night sleep before my big day today unfortunately my body had other ideas and I once again suffered with severe pain in my knee, hip, ankle and hand, I am learning how to operate though with little sleep and if I can smile through it, it makes me stronger to face whatever comes along in the day. On waking I was pleasantly surprised to see the sun shinning and this made me think that today was going to be a spectacular one.
The amazing Tess came and picked us up for our interview with Amanda Kellar and Jonesy. The morning traffic in Sydney can only be described as chaotic, we don't know how lucky we are in Canberra. When we arrived, Laura met us and took us to the recording studio where the interview would be taking place, we also met Ben who chatted to us. Jonesy and Amanda walked in, they were so friendly and hilarious, Jonesy had being to the hairdressers the day before and had a $120 haircut, it looked pretty cool but I don't think I would pay that much for it. The interview was a pre-recorded one so they can edited parts in and out of it. I was asked some questions which were quite different to what many other interviewers had asked, they talked also throughout it with their opinions and ideas, it was lots of fun, they are terrific people. I then gave them both a signed book, Jonesy wanted his to say 'You're the best' and in Amanda's I wrote 'You're Splendiferous'. We then had some photographs taken together and I will post them on this Blog once I return home to Canberra. The interview will be on WS FM later in the week, as soon as I know I will let you all know. The trip back to hospital was much quicker than on the way there as the traffic was much lighter. Tess gave me a lovely bag of surprises today and that as a beautiful crocheted jacket and long socks with pink love hearts from her Mum, Effie, some Lindt Chocolate which is my comfort food, a lovely butterfly cross stitch to keep me busy and a special bag from Matt Preston with his book that he signed especially for me, his CD and you won't believe this one, a cravat! I feel so overwhelmed and grateful to receive such wonderful gifts.
I then had an appointment with my Neurologist on C2 North, I felt quite nervous whilst waiting in the waiting room, I hate feeling this way but I guess it is all part of my journey and I have to breath deeply and find courage. Firstly she asked all about my book and she bought one from me which I signed especially for her. Then it was down to the medical side of the appointment, the check up. She asked if I had any new symptoms and we talked about my pain, knee, headaches, scar pain and how I generally felt. I did my favourite test, the nose to finger one, trying to walk as if on a tightrope, which I epically failed at as I totally off balanced and fell, testing of my nerves and muscles and looking in my mouth and eyes. I was weighed and measured, my weight has dropped again but I have been eating perhaps it is the pain taking its toll on my body. After my examination the Neurologist who is such a kind and caring person, looked at me with a look that made me worry, her forehead creased as she informed me that she had feared that earlier my tumour had caused a condition known as neuropathy and she confirmed that I do have it. This condition, which has different strains has seriously effected my muscles and nerves in both my legs, feet and arms, it is also what is still causing so many difficulties with my balance and walking, her prognosis was that I will be in my wheelchair for a very long period of time and most likely indefinitely for distance. She said she will converse with Occupational Therapy, this could mean that I will need a different wheelchair and looking to the future for my desire to do sport she is encouraging it but it looks like I may be a wheelchair athlete and I can tell you now if that is what occurs I am going to be an inspiring one. One storm, now for another, I also have developed a curvature of the spine which is a rare effect of the radiotherapy and I will need to see the orthopaedic specialist next visit about my knee and my spine. In a small rainbow moment I was told that I have gained some strength but it seems to be more prevalent earlier in the day and it decreases later on. Such is life and now I have some new challenges that I have to face, I will stay strong and I am not going to let them deter me from my goals and dreams. I will be honest I did cry, this news really hurt and upset me and really had me questioning again, why me and why so much? It just does not seem fair some days.
From my doctors visit I decided to continue on my main purpose in life at present and that is getting my story out there in the world, so we visited Ronald McDonald House which had been our beloved home away from home during treatment. I gave Michelle a signed copy of my book and she was so thrilled and said that it was the most incredible wish she had heard of anyone having, they are going to let sponsors and families know all about it and she wants me to send her all my newspaper clippings so they can display them in the house. Doing this warmed my heart after my devastating news and made me realise that this is why I have been given this journey and I have to see it through to making a difference to other people's journey's. I don't want other children to have to face the same side effects I have, something has to be done to change this.
When we came back to our welcoming Hotel room I cried again, I felt so low and disheartened, then as if in a twist of fate, we read emails and I discovered that Natalie had sent me the article and front cover of Canberra Weekly, she is a talented and marvellous journalist and told my story with so much compassion, empathy and understanding and to see myself on the cover in the photograph taken by Cole really blew me away and gave me a small rainbow moment, this could really start the sales sky rocketing this week, that is my dream and I hope that it will come true. I also heard from Denis, he forwarded an email message from a person in Paraguay about my book, my story is reaching distant places in our world this can only be a huge positive. Then Tess forwarded me an email from Carol whose friend Jayne did an article on me in her magazine Sunny Days Magazine and it was just magnificent also, the link is:
In this visit to Sydney so far even though my appointments have not brought me the best of news, what my book is doing is making a huge impact on other people's lives and what more can I ask for. I am now hoping that my MRI later tonight will be okay, I still have that dreadful, sickening feeling that I spoke about yesterday. I will only receive preliminary results whilst I am here and will be informed of the full results in next week after I return home.
While Jarrett went for a run along the Coogee Beach Front and up Dinningham Park Mum and I went for a walk and took in the picturesque views and the fresh sea air. As I looked out to sea I wished that the waves could come and wash all my troubles away and carry them far out to sea. I still feel a sadness within my heart but life is too short to dwell on your troubles no matter how terrible they seem, over the horizon there has to be my rainbow. Having Jarrett here has been great though because he always makes me laugh and gives terrific hugs just like Mum when I am feeling blue.
The rain is pelting down outside as I am typing this, it is as if the people in heaven are all crying tears upon our earth. I certainly have shed my fair share of tears today also, I am hoping that tomorrow there will be glorious rays of sunlight and my smile will match it. We received a telephone call from the MRI people to ask us if we could come in earlier as they had received a cancellation. So instead of having my MRI at 6.20pm I was in there having the canula inserted by 5.30pm. Having the canula inserted is so easy for me, it stings a little but that is nothing compared to the pain I experience every day. I had a good stratch of my head prior to entering the room because it has been itchy this afternoon. The MRI began and I closed my eyes and listened to the various different noises that it makes as it takes the images of my brain and spine. Then towards the end they come in and add the contrast which shows enhancements clearer. They then took more images and came to inform me that they wanted to take a few more, they did not say why and it was not because I had moved so maybe they just wanted to take a closer look at something. So instead of it taking the usual hour it took one hour and twenty minutes. Theodore was there with me lying on my legs and Mum was beside me holding onto my legs and stroking them. We always ask for a disk copy of my MRI so that I can keep it in my treasure box, they tell my story from the beginning.
I am so tired now and tomorrow is an enormous day for me starting at 10am with a physiotherapy review and ending at 3.40pm with an Endocrine appointment in between I have oncology clinic, occupational therapy review and a lumbar puncture.
Sunday, June 6, 2010
If you could call a Winter's day perfect then that would describe the day that greeted us on Saturday. Jarrett had running training at Stromlo but I did not go this time as Mum wanted to make sure everything was organised in the house for our return to Sydney for a week on Sunday. Once everything met Mum's high standards Nalani, Mum and I went to the shops to buy a gift for Celina whose Confirmation we were going to that night. The shops were so busy, I started to feel really uncomfortable and the noise really affected my ears, as they began to ring more than usual.
In the afternoon we had a visit from my number one Salesman, Tass and his lovely wife Gloria. They had been to Melbourne to see the stage shows Mama Mia and Fame and they brought me back the most beautiful and delicate lilac butterfly mobile. Then Tass excitedly told me some magnificent news that he had received on Thursday and that was that Mick from Canberra Weekly had called him to tell him that after Natalie had interviewed me, she and the camera man went back to the Office inspired and in awe of my story. Mick, who normally sells the front cover to people for advertising has decided to change his format because of me I can not believe how my story is affecting and chaning so many people's lives and this week I will be featured on the front cover of the magazine. Wow, me, a cover girl and attracting more attention to my story and my dream of helping and inspiring others this is just unbelievable! I am now hoping that every person in Canberra who picks up that magazine will also buy a copy of my book, this would be a true rainbow moment then.
I managed to grab a quick cat nap before we had to go to Church to see our family friend Celina make her Confirmation, a very special occasion. The Mass was lovely and reminded me of making my Confirmation last year when I returned home after radiotherapy for five weeks. After the Mass the family held a dinner at a wonderful new Italian restaurant near Yerrabi Ponds. The food was presented artistically and would have met approval of the MasterChef judges. I was getting extremely tired and after speeches and the cutting of the cake we left to go home to bed. It had been magnificent to be invited to be part of Celina's special day and she really loved the gift that I had chosen for her. I had also got to catch up with another friend Briana who has to have an operation soon and she is really nervous about it, so I was able to give her some tips on how to get through the difficult times. The only thing that was really dreadful on this night was that it was overly noisy and I just could not hear and it was so frustrating, I wished that I had my pink hearing aid and then I would have been able to answer questions people asked me and join in converstions like a normal person.
After a restless nights sleep with pain and probably nerves I woke to what could only be described as the most miserable, foggy morning Canberra has had in weeks. The thick fog made the air so damp and icy, Jarrett went to running training at the AIS while Mum and I packed our bags for Sydney. I received a lovely gift from Jenny who had knitted me a rainbow beanie and scarf, it is different to the one Tess and her Mother made I think rainbow beanies and scarves may be the new fashion statement this season, she also made one for Theodore which he is wearing. She had found a butterfly badge that she had bought years ago for a fund raiser for hearing impaired and she said she thought I would love to have it. The morning flew by so quickly and then it was time to leave and drive to the airport. As I hugged Tinkerbelle goodbye I felt a wave of sadness come over me, which made me choke up in my throat and made my stomach churn. As we drove the tears began to fall freely from my eyes and I found it difficult to stop. I don't know what this visit to Sydney will bring, I always hope that it will be positive but I had this gut feeling, so similar to the one I experienced prior to my line insertion surgery which went drastically wrong and caused me so much pain because the surgeon made an error and thought they were inserting a port-a-cath and not a double lumen central line and it was also the same feeling I had during my second and third chemotherapy when I had dreadful problems with my blood pressure, I am feeling so nervous.
Jarrett, Mum, Theodore and I were escorted to the aeroplane first, when you are in a wheelchair you are put on the aeroplane first and you always sit near the front of the aircraft. The flight was extremely quick, one minute you are up in the air the next you are landing. Unfortunately, it was raining in Sydney when we arrived and as the taxi drove us to the Crowne Plaza Hotel at Coogee Beach, Paul had organised this for us, Ronald McDonald had no accommodation,the Motel we had booked at is being renovated and Paul did not think it was a nice place for me to stay. Paul is one of the miracle men behind my book and he has a heart of gold, I feel so fortunate to know him. The Crowne Plaza is incredible, our bags were taken to our room, there was a lovely card written to me welcoming me, flowers and chocolates in the room and the most magnificent view of Coogee Beach with the pounding waves crashing onto the delicate sand, I honestly felt like Royalty today. I thought that it would be marvellous if all children who are ill and have to have tests would be able to stay at such a tranquil place it would certainly lift their spirits. We had a telephone call from Tess who is picking us up in the morning for my interview at WS FM with Amanda Keller and Jonesy. I am so excited about this, a Sydney radio interview this means that I can let everyone here know about my story and my burning desire to inspire, raise awareness and help others. I am so hoping that this interview will create a renewed interest in my book here in Sydney and that the sales will sky rocket and then that will mean so many more funds for Brain Tumour research. I also have my appointment with my neurologist tomorrow as well as my MRI, even as I write this I have felt a wave of fear engulf me.