Ten days to go!!

Dear all,
This is going to be my last blog before Christmas and I just thought I could wish you all a
Happy Christmas and New Year
before the great day arrives!

I also wanted to say that my GOSH consultant is happy with my scan, and I don't need another one until February. I am also growing well thanks to the Growth Hormone. Everybody here is fine apart from Jack who has broken his arm. He has arm in plaster for the next few weeks but is still his cheeky self!! I wish you all a very merry Christmas. Love from Sophie xx

a brilliant scan

Guess what guys - today I had my MRI scan at Great Ormond Street. Before the scan I also saw the Endocrinologist's assistant at UCL for a chat, which was just to check everything was ok. But the main thing that I want to talk about is my scan. Usually I scream the place down when they do the contrast injection but today this is what happened: half way through the scan I came out of the machine as normal and they took off the tape which holds the cream in place. Then she said they would use the left hand for the injection. I gave her my hand, she wiped it clean and then squeezed it to bring up the vein. I took a moment to compose myself and then let her do the injection. I was thrilled how well it went! Lots of love, Sophie xx

Back to school!

Hi. Sorry I haven't blogged recently since I have just gone back to school. Now I have some time off to tell you how I'm getting on. First, I'm going to tell you about my birthday. It was a bit of a disaster because I woke up in the middle of the night to find balloons everywhere on my bedroom floor. Of course, I was meant to wake up in the morning and have a surprise but.... However, I had a great time going to The Cricketers and, of course, opening my presents. For my party I went to the cinema to watch the Bratz movie with five of my friends. I'm starting L2G this year, and it is turning out much better than last year. But sadly I'm still getting those headaches! Its odd really. We can't work out why I'm still getting them. But I'm having another MRI scan in a week's time which is a bit scary. Guess what? The first week we went back I was "Star of the week"! Love, SOPHIE XXX

summer update

Hello everyone, I'm sorry that I haven't updated my blog recently. I have been so busy having a nice time because it's the holidays! However, I have now some news about my vision and a chat with my consultant. In the past two weeks I have been to Great Ormond Street Hospital three times. First there was an electrograph eye test. What happens is that they put some gel on my head, which feels quite rough, then they attach electrodes all over my head. They test one eye at a time by covering the other with an eye-patch so that I look like a Pirate! While watching a film they interrupt with flashing black and white squares and I have to keep my eyes focused on a red dot in the middle of the screen. The flashing squares get smaller and smaller. The second trip was in order to chat to the Professor who operated on me, for which we were in The Royal London Homeopathic Hospital building (which is next door to GOSH). He was very happy to see me again and I was happy to see him too! He asked me how I was getting on and answered my worries over how my head was feeling. He said I could blame him for every sore thing because he did the operation! The third and most recent trip to GOSH (today!) was for a further eye test and chat with the ophthalmologists. The test was a Visual Field test where I have to lean into a machine called a Goldmann. I have copied some information about this test with a picture. Here it is:

• The Goldmann visual field is manually operated, unlike the Humphrey and Esterman tests which are computerised. The patient fixates on a target at the centre of the screen. Lights are presented to the patient by moving them in from the outside of the screen. The patient presses a button when they first see the light enter their field if vision. The size and brightness of the presented lights are changed in order to map out the sensitivity of the eye to different stimuli. The resulting chart produced from the Goldmann test is similar to a contour map of the sensitivity of the eye.

They said that the results from the two tests showed a slight improvement following my operation! I now do not have another MRI scan until September or maybe October, but I hope to post again soon! Thank you for all your posts. You have all been very kind. Love from Sophie xxx

Hello, sorry I haven't been writing recently. I haven't had much to report but now I do. I am feeling much better. Yesterday we went to the shops and I bought "Howl's moving castle" and an Enid Blyton book. Today I went for a short bicycle ride in the morning and had my face painted in the afternoon, although I should really be resting! Thank you so much for all your kind messages, Sophie xx

Home at last!

I'm finally home. Thanks for all your comments and support. I feel much perkier at home than I did in the hospital, probably because I have been walking on my legs more. My head is still a little swollen and I have to rest for a few days but it is really nice to be back home. Sophie xx

Sophie has had a good day following her op. The neuro-surgeons are fairly happy and she'll have another scan soon. She has asked me to say thank you for all your support, that her head hurts a little, and that she has taken lots of medicine today, mostly orally (a small miracle in itself!). She should be home early next week.

Thanks!

Hi! Thanks for all your comments! At the moment I am really SCARED!!!!!!! I know that doesn't sound good, so to make you laugh I have installed a picture of me pretending to kill my brother. It was Invaders Day at school, and I dressed up as a Viking! Until next time, Sophie xx

operation move out

The operation is definitely going to be on Friday now, and I'm going in on Thursday to have an injection. I shall keep the tube (or cannula) that goes in with the injection for the rest of the day and night. Therefore I shall have to stay the night in Hospital. On Friday they'll put the cannula into use by making me go to sleep using an anaesthetic. I am a bit anxious about everything but mostly about what the bandage will feel like and also the anaesthetic. Sophie xx

JUST A CHAT...or maybe!!

Thank you for your replies! My Dad has just found out that we need to go to GOS tomorrow to chat to the consultants in order to decide what to do next. Unfortunately for me I might have to have a scan the same day or next day, so I have to pack an overnight bag. They might have to operate on Friday, if not then maybe Monday...

Eye Sight!!!

Hi! Sorry I haven't been writing much, but I had nothing much to say. But fortunately now I do have something to say! For a while I have been having headaches and needing to rest in the middle of the school day. Then one day I went up to London to have my eyes checked. Unfortunately, they found out that my colour vision was getting worse!! Luckily for me we didn't have to do the MRI scan that very day. I had to wait a week before the big day arrived. Since I last went for an MRI scan they have done a lot of work on a new reception area and so we went in through a new door. I didn't have to wait long before they called me in. This time they didn't put any magic cream on my hands (etc). But the lady said that I could have the magic spray instead. At first I was scared of the idea but when I heard that it did exactly the same thing (except although it only lasts for five minutes your hand goes numb immediately you put it on) I was convinced. The injection was over really quickly. Mummy said that I could have a present for being so good but in the end we ran out of time so Daddy bought me a bar of galaxy chocolate instead! xx

still growing

Today I went to the Rosenheim building, which is a part of UCL hospital in London. First I was weighed and measured, and I have both grown and put on weight. Then I talked to the endocrinologist about how I'm getting on with my genotropin pen, and the only different thing that I have to do is to use a shorter needle, and have a slightly bigger dose of the growth hormone. Also I will have a blood test in six month's time, at the same time as my next MRI scan at GOS so they can use the same cannula. On the way back Daddy took me into St.Paul's Cathedral before getting the train home! There wasn't any time to go to school before my piano lesson. Lots of love, Sophie x

Check Up at GOS

Hello everybody! I went to see the Consultant Oncologist (Dr.Michaelski or "Ski") last week and I also saw Stephen (the Neuro-oncology Clinical Nurse Specialist!) and I got my scan results. Thankfully my tumour has shrunk again, and I've also grown a centimetre since they last measured me. When they were measuring me I saw "tweety bird". I'm doing much better with my pen.

Lots of love SOPHIE xoxoxo

MRI scan

On Monday 5th I had another MRI scan at Great Ormond Street Hospital. The scanner machine looks similar to this one. I left school early so that Daddy could take me to my piano lesson, then we caught the train to Victoria where we met Mummy. Then Daddy went home to pick up Jack from school whilst we went on to GOSH. On the way to GOSH, every time I said a sentence I always began it with either "I'm scared" or "Mummy" (in a sad sort of tone). When we got to the hospital we went to the MRI department and we were told to take a seat and read a book. When they were ready for us we told the man what I wanted to watch in the scanner but he realised that the DVD was already being watched by someone else. So I had time to wait and go to the toilet. Then a nurse came in with a few questions for mummy and she weighed me and put onto the back of my hand some magic cream for the injection. Eventually we started the scan: as I went into the scanner I was really scared because it's really noisy & dizzy and you feel like it's coming out any moment. When it did I knew that we would have to do the injection which is what I was most afraid of. First off, they wiped my hand with a medi-wipe. Then they held me still, and after I had hugged Mummy, they cleaned my hand again (!) and really held me tight. I screamed for 10 seconds and the first time I didn't feel a thing, but it didn't work. So they had to do it again. This time it worked, and though it did hurt I didn't scream. For the next 15 minutes I lay there happily watching "The Incredibles". On the way home I was all smiles although tired. Lots of love, Sophie xx

The start of my Genotropin pen

The first time I used the pen of course it took a while, and I did scream. The next day I had a sore throat! The second time I did it I screamed, but from then on I hardly made a whisper(except the counting of course). My record is 10 seconds but it has taken as long as one hour 40 minutes! For some strange reason sometimes my leg bleeds and sometimes not! Each day I rate the pain from 0 - 10. My lowest rate is zero and my highest is 9.

Hope you like my blog. LOTS OF LOVE, Sophie xx

sophie's growing

Hello everybody, this is a new experimental blog for all those of you who would like to know how Sophie is doing, and also for Sophie to able to tell you in her own words how she is feeling. Please do post a reply whenever you would like to do so.

She has recently started her Growth Hormone treatment and already we think she has grown about half a centimetre, although the endocrinologists tell us not to expect much in the first few months. So far the daily injections have been a little fraught but we feel she will get into the swing of it soon. We are due to replace the first cartridge tomorrow, and we'll take the opportunity to use the practice cartridge on ourselves to show our solidarity!

Best wishes,

Richard & Clare