Monday, March 1, 2010


1st March 2010

We arrived in Sydney yesterday at lunchtime and settled in at Ronald McDonald House, it seemed so different because all the people that were there when we were there for all my treatment have also gone home and there are all new faces. Our room is small but it is a place to sleep.

Today was cool and wet and we started early with my MRI on my right knee. I went in and they thought I wouldn't need any contrast, but half way through they came in and told me that they would have to insert a canula and put in contrast to have a closer look. Having an MRI on my knee was very different because it was much shorter and the sounds were not the same, I did not know the results straight away, I would find out later today.

My next appointment was with the neurologist she checked my eyes, my reflexes, my coordination and was checking how I am going. She found that I have not had any improvement in my condition since December when she last saw me, so that is probably what I will remain like. My coordination on my left side has become stronger and my right side is worse and more noticeable now. My balance will not improve more than it has at this stage and my eye flickering and drooping will also remain as they are. It was also found that I have nerve damage in my hands and feet and this is was caused from the Vincristine and it will be permanent. They were hoping for an improvement but unfortunately because of the severity of my tumour and the treatment that is the best I can hope for. She also told me that where my hair is not growing back, that it is now not likely to grow at all but did say that these areas can be covered by my other hair as it grows longer. This was not news that I wanted to hear. She talked about school and felt that perhaps I should only go twice a week instead of the three times as it seems to be taking too much energy from me.

It was then time for me to visit the Orthopaedic Specialist, he was extremely nice and so was his registrar who assisted him. He did quite a few tests on my knee and checked the results of my MRI. He told me that my knee cap was sitting out of place, instead of being in the centre it is sitting to the outside, so everything connected is also pulling to the outside and this is what is causing my pain and swelling. He also said that because of the chemotherapy my muscles and bones have been weakened. He said to bandage or tape my knee as much as possible and to have physiotherapy to strengthen my wasted muscle on the inside of my knee so it will get stronger and start to pull my knee cap back to the centre. He finished by telling me that this will all be a long, slow process and that he want to see me in three months.

My last appointment for the day was my one hour long MRI of my brain and spine, as always I had to have contrast with this test. My day had been so tiring I fell asleep while I was having it. I will not know the results from this until sometime next week.

The lift at Ronald McDonald house was getting finished so Mum had to carry me up the stairs to our room. Tomorrow I have a early start because I have to have a blood test before eight in the morning.

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