2nd March 2010
"Life is the art of drawing without an eraser." You can't change what is happening in your life, even though you would like to. Today I felt like that.
On a cloudy Sydney morning we had an earlier start than yesterday, we had to be at the hospital for bloods before 8am. Which actually turned out quite good because there were not many early birds today so I was taken in quickly. One of my blood samples for the Endocrine team had to be put on ice to keep it stable. This was something new and interesting.
After bloods it was then time to check into C2 North for my Clinic appointment. It was back to the old routine of height and weight which I have lost a little more weight but then again I had to fast for my lumbar puncture later in the afternoon.
I was taken to my hospital bed on the ward where I would be for my lumbar puncture and then the registrar saw me. My oncologist is in Singapore at the moment at a Brain Tumour Conference and my case was going to be talked about by all the Brain Tumour experts over the world. My blood test results all came back as normal for someone who had finished chemotherapy but they are not that of any average twelve year old. I was told that the dietitian would be coming to talk to us about my weight loss. But first I had two appointments to attend one with physiotherapy and the other with Endocrine.
At my physiotherapy review the physiotherapist agreed that my knee recovery will be long and slow and noted that my right knee does not glide correctly. She taped my knee and then we did an exercise to strengthen the inside muscle of my knee, I then did some cycling which she thinks will be beneficial but I must stay within pain limits and swelling limits or it could do more damage. She they did some ultrasound on it and that always feels great and then she retaped it again and put the tubular bandage over it. She wants me to have another session tomorrow to check to see if the taping had irritated my skin and to have some more ultrasound.
Then it was time to rush off to my Endocrine appointment where I was measured, weighed, had my arm span measured, my sitting height and my head circumference. They then discussed various aspects of my growth with me. They told me that because of the high doses of radiation that I received and so close to my pituitary will affect my hormones so it is most likely I will need hormone therapy as I grow older and they are thinking that they may have to start with estrogen patches at the end of this year. It all sounds a bit terrifying and strange but the team seem very nice so I know they will do what is best for me. I have to go back to see them in three months so they can also check for any changes.
It was then time to go back to the ward ready for my lumbar puncture. While I was waiting the dietitian came to see us and she wants me to put more fat into my diet and try to build up my weight a little as I am underweight. It was then time to head off for my lumbar puncture, Mum came in with me while they put me to sleep and Theodore was there with me also as he has been the whole way through. Because I don't have the central line anymore they gave me laughing gas and then the smelly gas to put me to sleep. When I was taken back to the ward, Mum was there waiting and the nurses told her that I woke up and gave them a huge smile. I had to wait for an hour and have my observations done which my temperature was great and my blood pressure was its usual low. I was then allowed to go back home to Ronald McDonald House, I was really happy because I do not have too much pain in my back this time, the last one I had was quite painful.
When I was waiting for my lumbar puncture the play therapist came to the room and she gave me some sewing to do. It is a Hopes, Dreams and Wishes pillow you stitch two rectangles of material together and then you fill it with stuffing and throw in some star sparkles which are for luck and then you stitch up the final seam and then you decorate the front. I have some flowers and a butterfly to do that and also some beaded fringing to sew around the edge.
Some very exciting news from today is that Tess called and she is going to visit us on Friday afternoon to talk about my wish, it now seems that my book is going to go ahead and it will hopefully be published soon. This is so wonderful because I think my story can make a difference, inspire others and help people know more about what children with cancer go through.
There are some preliminary results from my MRI on my brain and spine and that is that the remaining tumour or what they call the residual disease in the floor of the third ventricle has grown but is stable, they have also found an increased enhancement in the erector spinae muscles bilaterally, my 4th ventricle is enlarged and slightly deformed and there is a small amount of blood products around the margin of the 4th ventricle particularly on the right side superiorly and there is evidence of cerebral and cerebellar atrophy which is noted by enlargement of the ventricles and surface CSF spaces and widening of the interfolial spaces within the posterior fossa. They said we will have to wait for the final result and results from the lumbar puncture in regards to the enhancement in the spine. Whatever happens though I will keep searching for my rainbow knowing that it must be coming soon.
Tomorrow is my hearing test and physiotherapy so I will let you know how that goes.