PAEDIATRICIAN AND PHYSIOTHERAPY

12th and 13th July 2010

As I sit to type this entry the rain is tumbling down out of the sombre grey skies, tears from the angels who look down upon us. It is such a contrast to the weather we experienced yesterday which although began with bleak, foggy skies, eventually cleared to a crystal blue, cheerful sunny sky.

My nights have remained constantly disturbed by this debilitating pain that I have been experiencing, I am so exhausted and it is taking its toll on me and Mum, she looks dreadful; dark circles under her eyes and just looking really tired also. However life goes on and like I always say I am lucky to wake each day and be able to face it the best way I can and that is usually with a smile on my face even though deep inside I do feel a little down.

I played Upwords with Nalani and Jarrett before we went grocery shopping, this week Nalani came while Jarrett went for a long run. I enjoy grocery shopping, it is like an adventure to me and I like to look for specials that Mum can buy as well as some new and interesting food we might like to try. The lady at the checkout was extremely friendly and was chatting to me, I felt really embarrassed though because I could not always hear what she had said, I hope she did not think I was rude as I tended to nod my head when I could not understand and I thought it was a bit annoying for her if I kept saying "pardon" all the time.

The rest of the day until the afternoon was spent answering some letters, emails and watching one of my Barbie DVD's. They always have a lovely moral to them and are light and easy to watch. They often teach you that it is important to always be yourself and follow your dreams, I really believe this is something every one can learn by. If we try to be like every one else then what a boring world we would live in and every one is an individual with a variety of extraordinary gifts and talents and it is important to use those to make the most of our lives and enhance the lives of the people around us.

It was then time for my appointment with my Paediatrician, I felt so fatigued and barely had the energy to sit. At the appointment we went over all that had occurred when I was in Sydney in June and what has been happening to me lately. Firstly, he felt that I have actually gone backwards and that is not my fault, it is due to all the side effects that are starting to take hold of my body. I could not stand very well and toppled, then he had to help me take any steps, I could not put any pressure on my right foot and I was so unsteady and in considerable pain as I attempted what he requested. I was measured and my height compared to the last time I saw him has decreased which is what happened in Sydney also, my weight has also dropped again, perhaps it is due to the pain that I am experiencing and it is draining me. He described what is happening to me as like my body going into hibernation, as even my pulse rate has slowed. He was writing my letter for my hearing aid, so that I will be able to have it fitted on 30th July, he thinks this is extremely important, especially with school going back next week, how am I supposed to sit in a classroom and learn when I can not hear at all, have trouble hearing correctly and have to concentrate so intensely that it tires me so quickly. He restated that my tumour has grown but is stable at this present stage however it could become aggressive next week, next month, three years or even five years down the track. There are two new areas of enhancement on the brain that are unexplained at this present time and the enhancement on my spine has remained stable. It is so difficult to try to live a normal life when you don't know what could happen. Yet I do see each and every day as precious and treasure every moment I have. He thinks that every child that has to go through a chronic illness should have to see a child psychologist so that they can discuss feelings. I always try to be positive, courageous and strong, he said that is great, but sometimes I am allowed to feel angry, negative and upset. He wanted Rhiannon to have a look at my foot when I saw her today to see if there was anything she could do to assist with it. We spent an hour with him and he will see me again on 22nd September but is always available to talk to in between appointments. He is a little disappointed about the lack of information that he is receiving from Sydney, I guess this is what happens when we don't have a paediatrics hospital here in Canberra, that is really sad, considering we are the Nations Capital.

I watched MasterChef on television and was surprised to see Jonathon go, he had avoided the bullet so many times but this time he just couldn't. When I went to bed I was still in pain but I snuggled into my warm bed seeking some comfort and sleep. However another sleepless night again has left me feeling rather like a zombie at the present time.

Today as I have said is a horrible day in Canberra and the sun has not even made the slightest appearance in our skies. My morning was spent playing Upwords and a card game called Happily Ever After. It was then time to go to my physiotherapy appointment, I always eagerly anticipate these as I find I do get some relief even though it is limited it does help for a few days. Rhiannon had a look at my right foot and agreed that the swelling and pain was caused by an injury, most likely when I was attempting to walk and collapsed. It seems the ligaments around the cuboid bone, now that bone comes off your metatarsal bones and it is the slightly lumpy, well it is actually a cube shape bone on the side of your foot, have pulled tight and have made the bone lift. She did some work on it and then taped it to take some of the load off it, hopefully it will provide some assistance for the next few days. She also worked on my knees and hamstrings, when these are released I find it helps me. Although my knee, hip and ankle are still extremely painful. She thinks a walking frame may provide some assistance to help me with my walking and is going to look into it for me. We do not have an occupational therapy contact here in Canberra anymore because our assigned person went on indefinite leave and no replacement has been found to take over her cases. I have to set myself little goals each day, when I have a bad day I can't be too disappointed and when I have a good day I need to make the most of it. I have another physiotherapy appointment in two weeks. I also have to continue working on my upper body exercises as well.

In the mail yesterday we received my next appointment letter for my MRI, that is on 7th September. So it looks like I will have all my appointments during the second week in September. I hope that this time the appointments are not made too close together as missing out on appointments is not only disappointing, it often means that I have to wait another three months to have some of my issues taken care of.

I also received a wonderful letter and that was from the paralympic committee and I have been given a provisional classification as a disabled athlete. I have a T/F 36 classification and it means when I compete at my school sports carnival it is in my own class, not against everyone else. This then means that I may be able to qualify to represent the school at a zone level also. This has given me encouragement to work devotedly on my upper body exercises so that I can prove that when you have a brain tumour you can do things that you used to be able to, just a little differently. Some people in Sydney have thought I should give up on my dream of doing athletics again but I did not want to, I feel I have already had to sacrifice so much since my diagnosis and this is one thing that is not going to be ruined by my tumour, surgery or treatment.

We are off to running training this afternoon for Jarrett who has fortunately made a full recovery after his injury. I am going to rug up and sit in the car to watch, there is no way I want to try to brave the miserable weather.

Tomorrow is Nalani's MRI, I really hope that it is nothing too serious and that she will be able to be back doing what she loves, I know how it feels to be deprived of those little activities in life that really do mean so much.

'There are times when life isn't all you want but if you have your wishes and dreams you can be driven forward over the biggest bumps and the deepest potholes'