20th to 26th August 2011
Saturday was the Australian Cross Country Championships, Canberra weather did not improve too much for the event as it was still wintry with rather arctic winds however the rain did hold off although the clouds did look extremely ominous. Jarrett's 6km race for the 16/17 year boys was at lunch time, we were all so very excited to have him racing on home turf this year. In a huge field of over one hundred Jarrett looked so tiny but he has a huge heart and enormous determination so size does not really matter. The first lap was the 1km loop and it was at a lightning pace, then the next two laps were of the 2.5km loop. Jarrett ran his own race and ran it well, he had to use his asthma puffer three times during the race just to prevent a repeat of last years attack. He made his way up the field, had a look of pure courage on his face and came 20th in his age group, 40th overall and in a time of 19:51, a twenty nine second personal best. He had gone into the race with a goal of coming in the top 20 for his age group and running under twenty minutes. We were all so proud of him and although he was exhausted at the end of the race, he managed a dazzling smile. Congratulations to all the boys in that age group, they all ran extraordinary races.
On the Sunday Jarrett had a team excursion to the AIS where he went on a tour and then went into the interactive sports area called Sportex. Then the team and families had lunch at the AIS meal hall where all the athletes have their meals. The food was incredibly delicious and healthy, that must be why so many of our athletes are performing so well, the food they get to eat everyday.
Monday was the relay day, each State enters a team of its top five runners who in Jarrett's age group each have to run 3km. The race was on the criterium bike course at Stromlo, that meant it was on an asphalt surface, which is quite hard on your legs. Jarrett's legs were tired from his race on Saturday but he was fortunate enough to have physiotherapy early in the morning so his muscles were loose which meant that running on the asphalt was a little easier. He was the fourth runner, he took off, he put everything he had into his run and was excited to run an amazingly fast time of 8:43 for the 3km, another huge personal best. When the last runner finished the whole team had run splendiferously and they won the bronze medal for the relay. As I took photographs of the medal presentation, I was so proud to see Jarrett with the rest of the ACT team smiling, that smile still has not left his face and he wore that medal around his neck until bed time that night. He even let me wear it, it is his first ever Nationals medal and to win it at home was extra special for him.
After all the excitement of the Cross Country it was then back to school for the rest of the week, I think it was quite an anti-climax for us all. In Science we did crosswords about chemistry and a periodic table bingo game. In English we are doing work on The Boy with the Striped Pyjamas, in Maths we are still working on algebra, there are so many different areas to learn, our main work in algebra this week was on factorising and expanding. In Textiles I finished my cross stitch bookmark and I have now begun work on a butterfly design for a greeting card.
On Thursday I visited Sarah, we have been trying to catch up for ages, she is working on a new project to try to get politicians behind the effort to get brain tumour co-ordinators for brain tumour patients and their families, many countries overseas have them and they make a huge difference to everyday life for the people they work with, there is some information about them on Sarah's website which I put on my Blog last week.
13th to 19th August 2011
As I type this post, the winds outside are powerful and ever so arctic, they are rattling the doors and windows, as they blow they are whistling with a high pitch sound that makes you cringe and rain which is more like sleet is falling from the grey skies. We were out in the weather all rugged up for the opening ceremony of The Australian Cross Country Championships at Stromlo. Although the weather is so bleak and miserable I had a smile on my face and felt so very proud as I watched Jarrett in his ACT School Sport Uniform during the ceremony. Athletes who make it to that level truly love their chosen sport and show amazing dedication and skills. Tomorrow is Jarrett's race, he is really excited about it and is hoping for a personal best time, I think he really deserves to do well.
We have had miserable weather for the entire week with two inches of rain falling in just the past day. At School in English I am now reading the novel The Boy in the Striped Pyjamas, we are still continuing to do algebra in Maths, in Science we are continuing our work on Chemical and Physical Reactions. In Textiles I have begun a cross stitch bookmark which has my name on it. In World Studies we have an assignment and I have chosen to do research on Child Poverty in the Developing World. It is hard to believe that next week we will be half way through this Term, time just flies.
I saw Rhiannon for physiotherapy, as usual she was able to provide me with some relief from stiffness and pain I have been experiencing. She worked on my neck and shoulders, knee, foot and hamstrings then she gave me some more exercises to help strengthen my upper body in preparation for the athletics carnival which is on 16th September, I am hoping to compete in all the throwing events and by strengthening my upper body I will be able to throw the discus, shot put and javelin further.
Nalani has had so many assignments over the past week I feel so sorry for her, she works extremely hard on all her work. With all the school work she has, it has been difficult for her to continue her rehabilitation on her knee but today at the opening ceremony she went for a jog on the course and she was so thrilled when she was not limping.
I have nearly finished my latch hook craft, when it is completed I will take a photograph and post it on my Blog. In the footy tips I am still winning, Nana is five points behind me and poor Pop is twelve points behind me. I am hoping that the West Tigers continue to play well this weekend.
Sarah who is a very inspirational lady, who I have mentioned before on my Blog has a website which tells all about her journey it is http://www.sarahmamalai.com/, her story is truly extraordinary and provides hope and inspiration for many people you may like to look at it.
Today I saw two beautiful rainbows in the sky, I hope that they will bring all those people who are going through a difficult time or just feeling blue some happiness and hope throughout the coming week.
6th to 12th August 2011
Some people dwell on the negatives in their life, this only weighs them down, I like to look on the positive side, to see the light rather than the dark side. By looking at everything in a positive way it can empower you to overcome the challenges that are thrown your way.
We had a dreadfully wet Saturday, with puddles rippling as the heavy rain drops fell into them. We were at Stromlo for a Cross Country Race for Jarrett. We found some shelter but Jarrett had to do his warm up and came back with soaking wet hair and clothes. As it drew closer to the race, thicker, heavier clouds moved across the already dismal grey skies and then the rain poured down. The race began, the course was not too slushy for the runners and they took off at a lightening speed, the pace remained fast with the front group taking a comfortable lead from the rest of the field, Jarrett was one of them. It was a 3km and as the runners came round for their second of the 1.5km laps they were truly flying. The rain did not ease at all during the race and neither did the pace, Jarrett finished fourth, he ran an amazing personal best time of 9:07 for 3km, his previous best for Cross Country was 9:35. He was really pleased with his time and was even happier that despite the bleak weather conditions his asthma was well controlled. I am always so proud of Jarrett when he runs, he is now tapering ready for National Cross Country which is on 20th August and I will be there cheering him on as loudly and proudly as possible.
Sunday after a walk around the AIS whilst Jarrett was training, Mum and I finished our packing ready to leave for Sydney. I had a long week of tests and appointments to face, it is always so very tiring and means that Mum and I have to spend time away from the others during that time as well as time off school. The trip to Sydney is short, the longest part is having to arrive at the airport an hour before the flight. We touched down in a sunny Sydney, we were the last to leave the aircraft because they have to get my wheelchair for me. We headed to the lift so we could go and get our baggage, we waited and waited and waited for the lift with another lady with a pram, but it did not come. So a Virgin Australia staff member found out the lift had broken down, the only other way down to the baggage area was down the step escalator, so Mum held me, one Virgin staff member took our hand luggage whilst another took my wheelchair down, we must have looked a sight. Then they helped us get our baggage and escorted us all the way to a taxi, they kept apologising for the inconvenience. It is interesting that at an airport when the lift breaks down there is not a better alternative.
Our week was filled with appointments and tests, unfortunately we did not have any time for pleasure, although we did manage to sneak in a walk along Coogee beach to watch the waves come crashing in, all white and frothy as they hit the sand. I had a blood test, which was followed by my MRI, they decided to put the cannula into my left hand as my right arm vein had been used so much, however even though they thought it had gone into my vein, it had not because when they put a flush through it, it leaked out and my hand all puffed up from the fluid. So they went for the right arm vein again, it went in easily with no problems at all. I went into the MRI room, was all lined up properly, had ear plugs put in and all secured, Theodore once again came with me, he lay on my stomach throughout the whole time and of course Mum was there too as always. During an MRI you have to lie extremely still, I have learnt to just drift off and relax, it can be difficult for some people and even some adults have to be put under anaesthetic when they have one. Half way through the MRI they come in and put contrast into the cannula then they take more images. This time my MRI went for longer, I had to lie still there for almost two hours, at the end when I sat up they told me I was a perfect patient and they were amazed that I could stay that still for so long. I think part of my secret is that I have a good scratch and shake before I go in and I try to relax during the procedure.
My next appointment was Oncology Clinic, you get weighed and measured and they ask you several questions about how everything is going. Then they do some neurological tests, test reflexes and other general functions. I was told some preliminary results from my MRI, it showed that I have a moderate diffuse enlargement of the ventricles and of the extra-axial CSF spaces, these have remained stable from the last MRI, there is post surgical enlargement and distortion of the fourth ventricle and gliosis surrounding the posterior fossa and there is diffuse high signal on my vertebrae from radiotherapy. The residual tumour has thickened from the last MRI but is still stable at present and in a new finding there is an amount of fluid leaking into pelvis. When the final report comes through further investigations need to be done but they will be able to done in Canberra.
I had to have another lumbar puncture which means a day in Hospital, before a lumbar puncture you have to fast because for children it is done under a general anaesthetic. It was a busy day on the ward and I had to wait much longer than usual for my lumbar puncture. While I was waiting I did some work on my latch hook craft, everyone on the ward was fascinated by it and thought it looks like lots of fun to make and also looks terrific. It was after five before I was taken in to theatre for the lumbar puncture, it turned out that I was last on the list for that day. As the anesthetist put the mask over my face, he asked me to tell him a joke, I could not think of any then he asked me to sing a song by my favourite band, so I started singing 'Princess' by Short Stack but ended up giggling from the gas they use in the mask. The next thing I knew it was all over and I was in recovery. I was taken back to the ward and there was Mum waiting there for me with an apple juice and two delicious looking cupcakes. I was so hungry as I had been fasting for so long, we had to wait until six thirty before we could leave the hospital as they have to make sure all your observations are fine before they let you go. It was such a long and tiring day and the next day I had my neuropsychological testing.
The neuropsychological test is an intense one that is extremely fatiguing. Firstly we had to fill in some paperwork and answer questions then the neuropsychologist talked to Mum and I. I have to do these tests because the high doses of radiotherapy that I had can cause neuropsychological difficulties. I already notice these when I am at school in the areas of processing, memory and concentration. Firstly in the test I had to write my name and draw a picture, then I did some pattern matching, working out what was missing from a picture and each time it became more difficult, I was given a word and I had to chose a word that had a similar meaning, then the neuropsychologist read out numbers and I had to try to remember them and repeat them and the last test in this section was following given numbers and letters. I was then given a break to have a drink and go to the toilet, I was so tired I just wanted to go and have a sleep. There was still more testing to do though, so a twenty minute break was all I got. On returning I had to make a pattern with blocks that matched a picture I was shown, then I had to copy drawings and then do them by memory, I could feel my eyes flickering like crazy, my nystagmus does that when I am tired. More memory testing was next as she read a list of words and I had to repeat them from memory at the end of the list, the lists became more difficult and it was just too hard for me. We went back to drawings again and then more word lists. I was given another break for twenty minutes again for food and drink. I was then on the final lot of tests, I was given a letter and had to come up with words, I was given certain topics for the words that I had to come up with. Because I had had the lumbar puncture the day before and anaesthetic stays in your system for forty eight hours afterwards the neuropsychologist could see that I just could not do anymore so decided to stop the testing. She is going to write a report and send it to us within the next few weeks, she did say though that she could see that I had difficulties with concentration and memory. It had been a long, long day the testing had gone for almost five hours. When we went back to the hotel I had a lovely relaxing bath and nearly fell asleep in the bath, after I was dried I lay down on the soft bed and did fall asleep, I did not wake up until dinner time.
I was supposed to see the neurologist but they were unwell so that appointment was cancelled which was a relief because my body and mind were exhausted from so many really hectic and demanding days. I was able to have dinner with Tess, who was my Starlight wish granter, it was so wonderful to see her and catch up on all her news, she is a special person in my life.
It was raining in Sydney yesterday and exceptionally windy, it actually reminded me more of Canberra. The hotel staff told us that the week before they had temperatures of twenty four degrees and dolphins had been frolicking in the ocean. Yesterday there were sirens on the beach, they were shark alerts, no one was in the water at the time, it was too wet and cold.
I always think that there is no place like home and being away from home makes you appreciate it even more. I will find out more results throughout the coming weeks, I will also find out what extra tests and procedures I have to have. As I said in the beginning of this Blog I try to always be positive and even though my preliminary MRI result has shown increased enlargement of the residual tumour and fluid leaking into my pelvis the word stable is always comforting to me.
It was stupendous to read in last weeks comments that Ruby, who I met in hospital last year decided to raise money for the Sydney Children's Hospital Foundation Brain Tumour Fund after reading my story, if every young person in Australia was as thoughtful as her imagine what a difference we could make. I continue to save all those five cent pieces ready to make a large donation at Christmas time. I also believe that Dr Teo is now going to focus much of the funds that Cure 4 Life raise to help his research to find a cure for brain tumours, he is such a compassionate and caring doctor, I hope that the money he raises will help him find a cure.
How about my West Tigers, they are splendiferous, five wins in a row and against some of the top teams, I have a feeling that they may pull off a miracle and take out this years premiership that would be a definite rainbow moment for me.
Next weekend I will be cheering Jarrett on at Cross Country Nationals and also praying that he does not have any breathing difficulties, he trains so assiduously and always shows such courage and good sportsmanship, I think he is an inspiration.
Take care everyone and remember to find the positives in your lives because it will make a comprehensive difference to your day.
30th July to 5th August 2011
Another week has come and gone, the weeks go so quickly, before we know it, it will be Christmas time. In a lifetime everyone has a dream or goal they would like to achieve. I have been watching MasterChef on television and many of the contestants have spoken about realising dreams. I think that if you picture yourself achieving your special dream or goal, if you really place yourself in that picture, think and hope deeply, take positive action then you will be surprised to find how your visualisation can become a reality.
I found a wonderful new craft activity on the weekend, it is called latch hook craft, you use a piece of canvas with a printed illustration on it, have coloured wool that matches the colours of the illustration, then you have a tool called a latch hook, using that latch hook you pull the wool through each hole. When it is finished you can make a cushion, wall hanging or rug from it, they really look amazing. You need patience and time but when you finish it you have something to be proud of. The one that I got was a pattern of a sun and a rainbow, I will be taking it to Sydney with me to help the time I have to spend in hospital and at appointments more bearable.
At School this week I have continued with algebra in Maths looking at positive and negative number substitutions, today in English we finished reading and listening to The Merchant of Venice, in Science we are continuing worksheets on Chemical and Physical Reactions, in Textiles we are working on a design for a calico bag that will hold our work and in Christian Living we learnt about the music within us and how having a positive attitude can change the outcome of an event.
On Wednesday I had appointments at Canberra Hospital, firstly I saw the Cardiologist who did an echo cardiogram on my heart. Often when you have chemotherapy it can affect your heart, fortunately my chemotherapy did not cause too many problems in the area of my heart, although my heart beat has become irregular and my heart is a little smaller than average it appears to be healthy at this stage, which is terrific news.
Then I had to see the Endocrinologist, that is when I did not receive the greatest news, my cholesterol remains high and this is of concern to him, I have to be put on a low fat diet and be monitored closely, if there is no improvement with diet then they will look at medication but because the high cholesterol is caused by the treatment there is no guarantee that the medication will work. It has also been confirmed that I have insulin resistance which is the early stages of type 2 diabetes, this has to be watched and treated also. My thyroid appears to not be functioning correctly either and there has been a drop in my thyroid function test. He ordered a new blood test for that and if it has dropped again, I will need to have further tests done for this.
We had to fill in all the paper work to apply for me to be able to have the Growth Hormone injections, it can take approximately two months for approval, that works out because when you have had a brain tumour and the treatment for it you can not have growth hormones until two years after completion of treatment and that will be on 17th November this year. I will have an injection every day, there were various types and brands but the one best suited to me was an injection with no preservatives in it. Once I start having the injections which will initially be at a high dose, my legs will begin to grow, they are hoping that in the first twelve months I will grow five centimetres. I have been told before that only my legs will grow, my spine will never grow because of the high doses of radiation I had. There are side effects from the injections and that is that in the first three to six months whilst I am on them that I will experience severe pain in my bones and muscles as they grow, I will require pain killers and physiotherapy to assist this side effect.
The Endocrinologist also told me that the period two years to five years post treatment is when recurrent tumours occur and if the remaining tumour grows or new tumours appear I have to be taken immediately off the growth hormone treatment. The Endocrinologist also sent me for several blood tests for some painful symptoms I have been having, he is checking out lactose intolerance, heliobactor, crohns disease and coeliacs disease.
Today I had physiotherapy with Rhiannon, she worked on my neck which has been sore and tight, it was so tight it was making my head tilt to the side. She then worked on my still repairing heel, my calves and hamstrings. Rhiannon has put so much time and effort into my rehabilitation and I feel so blessed to have her.
Mum and I leave on Sunday for a busy week in Sydney, I have so many appointments and tests, we are going to be near the beach but unfortunately won't get much time to enjoy it, I have also checked out the weather forecast and it looks rather gloomy with rain and winds predicted the whole time we are there.
Jarrett is running in a 3km race this weekend then his training tapers because on Saturday it is only two weeks until Cross Country Nationals. We are all very excited, we are all hoping that this Nationals will be better than last year for him, when he had his severe asthma attack.
Nalani continues to do well with her rehabilitation for her knee, she is still going to the gym and has begun running again. She is extremely busy at School, she has four assignments at the moment all due in two weeks, as well as she is looking at options for further education next year. She wants to do study in the area of sport, either massage, fitness, exercise science and coaching or sport management. It is a very exciting time for her making all these decisions.
Many people comment on the wigs that I wear, some people have even thought that it is my real hair. Although it would be nice to have real hair, I do have some but it is so sparse and patchy I feel that I am fortunate that you can get such lovely wigs, I can have a new look, style and colour every day, not many people can do that. I have purchased many of my gorgeous wigs from a place called Play With Hair, they are an online company and their web address is http://www.playwithhair.com/, you should see all the different wigs they have, you may recognise some of the ones that I have worn in photographs and on television. Having acess to lovely wigs is important for many people, especially teenagers and women living with cancer because a wig can make them feel more confident and beautiful when they are going through such a difficult time in their lives.
Keep following all your dreams, never give up on them or yourself and one day you will find that your vision becomes a reality.
