Tue, 24 Jan 2012 19:41:25 +0000

Hello everyone, I hope you all had a lovely Christmas and a great new year.
All the family had a lovely one. Santa got us all lots of pressies, i got a lovely red barbour jacket and red matching wellies The jacket is very cosy and i can’t wait to wear my wellies, so i am now wanting it snow or rain lots and lots haha. Never thought i would be saying that. My mum, dad and my sister got dubarry boots so for once my parents are in fashion haha. We had a delicious Christmas dinner, we had sirloin steak, just to be different haha, the best was for pudding, we had clootie dumpling it was so good, its definitely worth all the work that goes into it, well all the work my mum does, thank you.

I brought in the new year at a local night club with my friends, it was very busy and i could hardly move let alone dance haha. I also had a few heels stand on my toes which hurt a bit but i suppose thats what i get for wearing peep toe shoes haha, apart from that it was such a laugh.

Been to Birmingham for the first time this year, everything went fine thankfully no weather hassel’s this time. However we had to get the later flight home this time so that means we got to do some shopping So got a new dress, you can never have enough dresses haha, i think my mum and dad were just happy i actually bought something since i drag them around so many shops and never buy anything haha.

I hope everyone had a lovely christmas and a happy new year.

Oh i almost forgot i’ve thought of new lyrics thanks to my dad singing it non stop for a whole day haha. This is a long one so i’m just doing one haha.

Melanie - ‘Brand new key’ ( can’t drive, due to seizures)

“I ride my bike, I roller skate, don't drive no car
Don't go too fast, but I go pretty far
For somebody who don't drive
I been all around the world
Some people say, I done all right for a girl”

Love Rachael.

Tue, 20 Dec 2011 19:01:57 +0000

Hello everyone, I have got the results of my latest scan and they show that my tumour is stable, which is awesome.

Not had the best of luck with appointments this December, we were supposed to go to Birmingham on the 8th. That was the day of the very windy storm which the Scots named (like the Americans do with hurricanes) Hurricane Bawbag, haha only the Scots. So as we waited at our gate, on the plane to arrive. We watched planes coming in to land, many were swaying and couldn’t land, so they had to take back off again. Our plane eventually landed safely but they were not letting us on the plane until the wind had calmed down and it was safe for us to fly so we waited 45 minutes and were given an update then another 45 minutes and so on. We decided to re-book our flights for next thursday the 15th because even if the flight did take-off, we wouldn’t be able to make the flight back home at night.
As we left to go back to the car park, it came on hailstones which were setting off all the alarms of the cars and we could feel the sting through our jeans. It took us a while to get home as the bridge to take us home was closed so we had to take the long way home but so was everyone else so it was pretty busy.

As i have now been transferred over to the Western General Hospital my new seizure doctors are thinking about changing my tablets to ones that would make me less tired, which would be good as it is very annoying being so tired a lot of the time.

I hope everyone has a very Merry Christmas and a Happy New Year!

Lyrics of The Month

Corinne Bailey Rae - ‘Put your records on’ (about my tumour)

“The more things seem to change, the more they stay the same”

Lets do a Christmas one

Slade - Merry Christmas everybody (keep positive as tumour has finally shrunk)

“Look to the future now, its only just begun”

Merry Christmas and to all a goodnight.....! Love Rachael and Family xox

Fri, 4 Nov 2011 19:17:07 +0000

Had the results of my latest scan they show that my tumour is still stable which is very good to hear.

Amgen company who supply the drug, don’t allow you to be pregnant while getting it as it will cause bone abnormalities for the baby. They have now found out that you must be off the drug for 7 months before its totally out your system and you get pregnant for the baby to be safe and not affected by the drug. So overall you would be off the drug for 16 months which may cause your tumour to grow back. As research shows tumours grow back when the drug is stopped. I’m not planning on having a baby at the moment but finding it hard to realise that i wouldn’t be able to in the future, as well as many other women on the trial i’m sure. Although you never know what may happen in the future as more research is done.

The consultant that runs the trial in Birmingham, he is of to Chicago. There is an Oncology conference there. When he is there he is meeting the rest of the investigators form around the world who run the Denosumab trial. So should have news when I meet him next.

On a happier note, since i’m 18 now been going out to clubs etc, it was my friends birthday on Thursday so we went out for it in Dundee. She goes to Dundee uni and stays in halls of residence, was so jealous of her flat there, it was so nice. It would be so good to live there meeting new people and parties all the time, you would have to go to uni thats the down side hahaha. We got in about 3 and some of my friends had to go to uni at 9 with a hangover haha. I didn’t get a great sleep so was exhausted the next day.When I got home the next day I slept after tea at night, got up for a little while then slept all night. I suppose thats the downside of having a brain tumour you cant’t keep up with all the other people my age. The next day we went back out for a halloween night out at my home town hahaha. I didn’t have the best fancy dress outfit just a animal print jumpsuit, some people take it soooooooooo serious and their outfits and make-up look like they are from movies and stuff hahahaha.

Not much else to report so peace out Happy Halloween. xox

Oh i almost forgot Lyrics time......

Rihanna - ‘Cheers’ (to my tumour and drug)

‘Don’t let the B*sterds get you down, turn it around with another round.’ (of denosonab)

Travis - ‘Flowers in the window’ (tumour stopped growing)

‘So now we’re here and now is fine.’

Tue, 27 Sep 2011 20:57:02 +0100

Time flies as your having fun eh hehe, so thats 3 years since my diagnosis a lot has happened but the main thing is that its al going good now.

I have been having the dreaded funny turns again much more frequently so since i am 18 now, i am being transferred to the western general hospital, Edinburgh. So we had a meeting with Dr Mclellan and Dr Duncan who is from the western and they all thought i should go back on the clobosam half a tablet daily, i have to admit at the start i was exhaustified, i think as it gets into your system and you have a good nights sleep then its not so bad now.

The day after that appointment i had my scan. I’m thinking it might be my last scan at sick kids, which i’m not too happy about as i quite like getting it there as you get to watch a movie making it slightly less boring lol FYI don’t watch a funny one you move when you laugh and your not supposed to move. If you do you have to get parts of your scan done again lol, we got the results back and everything is looking good no growth, my tumour is stable.

the same day we had endocrine appointment and luckily that week i just started a period all by myself so Dr Strachan was pleased to hear that. He thinks as the hormones to produce my periods are working this should mean that the steroid, hydrocortisone that i am taking tablets for, should be working. That means the horrible not nice jag in the bum cheek next time to check if i still need to take the steroid so fingers crossed i don’t need to take it as i do not want the test again no likey :(.

We had birmingham the next week on a tuesday this time, i had just started an evening course on tuesdays. I had the chance to swap to a monday for the rest of the year so i did. Just my luck, what happens when we get to Birmingham hospital, they tell me they are setting up a separate clinic for people just on trials and its going to be on a Monday hahahaha, couldn’t believe it, luckily we all put on our puppy dog eyes and asked to still come on a Tuesday or Thursday and of course they said yes, phew!!

Got some new lyrics here they are.......(8)

The last goodnight - ‘Pictures of you’ (about denosonab, its not released yet)

“There is a drug that cures it all, blocked by the government wall”.

Louis armstrong - ‘What a wonderful world ‘ (in hospital) yes its old but its ghed (aka good)!

“I hear babies crying, i watch them grow”

Mon, 15 Aug 2011 20:35:50 +0100

Summer is nearly over :( but i had a great one. It started off with my 18th Birthday which was great. I got my T in the park ticket, a designer bag which i picked before my birthday and my mum and dad surprised me with a gorgeous Tiffany’s charm bracelet. Its so nice i also got 2 charms to put on it, one was a heart locket and the other is a small blue bag that says tiffany’s on it, i love it. However my mum decided to play a trick on me by putting a cheap bracelet in the Tiffany’s box instead of the real one, so it looked like i got this not so nice bracelet for my 18th and i did believe it was Tiffany’s but later on she gave me the real one, isn’t she cheeky. I always wondered where i got my cheekiness from haha.

Next was T in the Park. This was the best weekend ever so much fun and just non stop. Me and my friend emma, who i was sharing a tent with drove up on he friday morning and trekked about 500 million miles from the car park to the doors of the campsite carrying all our stuff. Then we met with our friends who went up on the thursday so they had a good camping spot, we managed to squeeze our tent into the space they saved us, then that night i went to see...  Big Country  The View
Tom Jones
Plan B
Arctic Monkeys They were all great. I was up close for them all which was mad as everyones all squished up. Then the act comes on so everyone starts to jump while your squished its mad hahaha Saturday i thought was the best i seen...
Kesha
Manic Street Preachers
The Script  Beyonce
Coldplay
I tried to call my Dad when Beyonce sang Single Ladies but i couldn’t get through i think everyone there was wanting to do same thing haha. At the end of her performance she sang “At Last” which he loves, so called him during that hehe, The Script were amazing also i was looking forward to them the most :)
Sunday i seen...
All Time Low
Bruno Mars
My Chemical Romance
Tinnie Tempah
Calvin Harris
There are 2 outdoor stages at opposite ends of the arena. Main stage and NME stage, so acts are on at the same time. So me and one of my friends wanted to see My Chemical Romance who were on at the end of Bruno Mars and start of Tinnie Tempah so we were running back and forward between the stages and the arena is massive lol. We all went to this large tent which has acts playing in it too, its called King Tuts Wah Wah tent lol, we seen Calvin Harris there who was amazing it was so hot and sweaty in there sweat was dripping from the roof eeeewwwwww. the next day we got woken early by this van driving around shouting good morning pack up your tent and go home basically lol. So we started the long trek back to the car i got home my mum and dad said i smelt bad haha. So jumping in the bath and collapsed on my bed and slept for ages. Altogether best weekend ever great atmosphere everyone is your best friend haha cant wait for next year :D.

Next was a trip to Bournemouth organised by CCLASP where they send a group of teenagers down to stay in this house/hotel run by a charity in Bournemouth called the Youth Cancer Trust. There are 8 people allowed there at the same time and there can be 4 patients and each can invite a friend so i invited my friend Natasha. Others invited one of their friends. We travelled down to London by plane, then got a bus to bournemouth we got settled then went out to for a walk along the beach. The next day we were taken to a lake where went sailing and we got to drive a speed boat which was so much fun. The next day we went to a different lake and done water skiing, which is harder than it looks. my legs and arms were so wobbly after it. We then got to do the rubber rings, where the speed boat has 2 rubber rings attached to the rope at the back and i sat in one and Natasha sat in the other. It pulls you along and you get thrown about when you go over the waves from the speed boat and we kept bumping into each other haha was so much fun. That night we went back along the beach and had cocktails in this cocktail bar which was a laugh. The next day was another fun packed day as we went go karting, was so much fun. I came in last both times haha but was fun. I am obviously just a more cautious driver than the others, that was my theory anyways lol. The next day we headed back home to Edinburgh, it was such a great experience which i will never forget.

Last but certainly not least was our trip to London organised by a charity called Rays of Sunshine, they treated my family and i to a few days in london to see Billy Elliot. Firstly we flew to London and we were picked up by a private hire driving company. There was a man holding a sign with my name on it which was so funny to see, he then drove us a long long way to the Hilton Metrepole hotel which was gorgeous inside so posh. we got to our rooms and we had rooms that joined by a door inside, the view from our rooms was amazing you could see for miles. That night we went out for a walk to see the where the shops were that we wanted to go to the next day. So the next day we set out on our shopping trip we had to definitely go to Abercrombie and Fitch as we had vouchers for there for ages and we couldn’t use them online. So we could finally use them, my mum and dad got my sister I a hoody and a pair of joggys, we bought a t-shirt for ourselves. My mum and dad hate the shop as it is like a night club inside. Its dark and the music is so loud and there are people everywhere pushing and shoving you, there was a male model at the front of the shop with his top of for you to get your picture taken with haha. We then went to Tiffany’s so i could give them my bracelet to put my charm on for me. They took my details and can send it back up to us which was great The shop is so posh everything and everyone is so nice, we all felt a bit scruffy in our jeans and t-shirt and it had been raining so our hair was mad as well haha. I mentioned earlier that i got a designer bag for my birthday, the designer is Michael Kors and he has a shop in London. I had to go to that and we did. The clothes there are a bit older than me so didnt see anything. There was a pair of shoes that were £195 with 50% off so i got them for £78, so I bought them. They are the most expensive pair of shoes i own but they are also the prettiest so i’m happy lol. That night we were going to see Billy Elliot so we got ready in our hotel rooms and were visited by a member of Rays of Sunshine so they could speak to us and take our picture. They had booked a limo to pick us up and take us to Planet Hollywood for a meal before the show. However it did not arrive, so we had to get a taxi to Planet Hollywood. Just as we arrived at he restaurant they said the booking was for that afternoon not for 5 which was a mistake but we got a table and they apologised for the mistake. We then got a private car to the Victoria Theatre and just as we thought there couldn’t be anymore mistakes the box office said they had sent the tickets out to us but we hadn’t received them, luckily we had the booking number so were able to get the tickets phew!!! The show started and about a quarter way through they stopped the show and a man came on stage and announced that the boy who plays Billy elliot was feeling ill and could not perform haha. Oh no we were all thinking this cannot be happening after all the things that happened, however hey were getting the stand by ready so the show could still go on lol. The show began again and it was brilliant, it was so funny as well and all my family enjoyed it which is the main thing :). The next day my sister and i went to the pool in the hotel which was very nice, we got dried and packed and we got picked up at 1 to head to the airport and head home. It was a lovely trip and i wouldn’t have changed anything. I got lots of new clothes and the memories will last forever. Thank you Rays of Sunshine for a fabby treat :D

So thats my fabulous summer over thank you to all the Charity’s and my family for an amazing time.

Lyrics Time da da da dum can’t touch this. lol

Last blog i mentioned the handbags and gladrags song by stereophonics  “The handbags and the Gladrags,
That your poor old granDAD had to sweat to buy.”

This is because i got an expensive handbag for my birthday and my dad had to sweat and work hard so he could buy it haha

Beyonce - Irreplaceable (when i look to the left its double vision)

“To the left, to the left
To the left, to the left.”

Mon, 4 Jul 2011 10:56:25 +0100

Happy 18th Birthday Rachael,
Lots of Love, Mum, Dad and Vicki.
xxx

Thu, 30 Jun 2011 21:16:58 +0100

Hello its been a while, i have recently had my results for my scan it shows no change which is great news :).

I mentioned in the last blog that i started these new tablets to start my period so i took them and hurray i did have a period i was happy i had one and the tablets worked, but not happy during it :( i hate them, i ate so much constantly and stomach was sore no likey lol.

I have recently left school as my exams finished and my six years of servitude was up hehe. So to end our six years we had a prom and it was great. I had so much fun the whole day. I got my nails done the night before. I finally managed to get an appointment somewhere, every other girl in my year was getting there nails done basically, so there were no appointments, but i got one. My hair appointment had to be changed to the morning so i was scared that it would go flat. The whole day i hardly moved to make sure it didn’t lose the shape, my dad was laughing at me :( hehe. I struggled in to my dress and my parents, auntie and uncle took pictures of me. My dress was a one shoulder which was ruffled down and then went out at the bottom it was a dark red/black colour. I was finally ready to head of to my friends house for a pre prom party for some drinks and lots and lots of pictures haha. We then off to the school, everyone looked great thankfully no one else had the same dress as me, then on to the mini bus. When we arrived at the venue it was a beautiful building with lovely surroundings even more pictures were taken. We all took our seats and had a lovely meal with a cheeky glass of wine, then the tunes started and everyone was up dancing, even the teachers what a great night. I had to take my heals off, my feet were so sore. i got back to my house about half 12 got changed then headed out to my friends house for the After prom party which was great, didn’t get in until about 4.30 in the morning thank goodness i took a day off work don’t think i could have managed hahaha.

So thats prom over, haven’t been doing much else after school just volunteering at a local nursery until i find out what i want to do, still don’t know :( someone just tell me pwwwwweeeeeeeaaaaaaassssseee.

We have been to Birmingham again another very long day of sitting and waiting in trains and planes, especially waiting rooms waited for like 2 hours, do the doctors not know that i want to go shopping as well, obviously not!! Still glad to go though to get my treatment. Since my last blog and putting my tegretol up. I was still having these funny turns. Dr McLellan, my neurologist decided to increase them again, so i now take two tablets in the morning and two at night. The tablets are making me quite tired, maybe it will get better once they are into my system.

Its time for the New Lyrics! (8)

Jason Derulo - In my head (About my tumour shrinking)

In my head, it’s going down,
In my head, it’s going down ,
In my head, Yeah. In my head. Oh yeah.

Stereophonics - Handbags and Gladrags (I’ll explain next blog, stay tuned ;).......!)

The handbags and the gladrags,
Thats your poor old GranDAD had to sweat to buy.

Sun, 22 May 2011 20:29:33 +0100

Long time no speak hehe, the 411 is that i am being put on yet another tablet to start my periods i have to take 3 a day for 5 days then a few days later i have a period. I haven’t taken them yet as i want to try it after my exams but before i go to T in the park, so will have to time it right or might just wait until after that as well.

Not much else has happened apart from that i have a had a few more funny turns but nothing big thankfully. Due to me having a few more, Dr McLellen has decided to raise my tegretol level. Thats seizure tablets to you and me. I currently take 1.5 tablets in the morning and evening which is the smallest dose you can take. She now wants me to take, 1.5 in the morning and 2 in the evening, hopefully the extra half a tablet will help me stop getting them. I have taken them for over a week now and I have been fine.

As part of the trial I also take calcium and vitamin D. They have been giving me a really sore stomach. I asked Mr Grimer about it the last time we were at Birmingham for my treatment. He seemed to think that I was the only one with this problem. So he changed these tablets to ones that dissolve in water. They seemed to have helped.

Not much else to say but i have recently been sitting my exams, hopefully went ok. I think i mucked them up, but will just have to wait and see, fingers crossed hehe :)
So I have finished school, just to go back for one more exam and then Prom. Ill tell you how that goes once I’ve been. Don’t know what I’m going to do for a job. Anyone got any offers, let me know.

Also my lovely jubbly sister, Vicki just turned 21 so Happy Birthday to you sis, couldn’t do it without you i hope you had a great day, thank you.

Now its time for (drum roll) The Lyrics of the Blog.

All time Low - Break your little heart (good times/laughing going to hospital & surgery won’t benefit me)

“Watch you take the fall, laughing all the way to the hospital, ‘cause theres nothing surgery can do”

Hanson - Mmmbop (tumour shrinking & losing hair during radiotherapy)

“In an mmm bop they’re gone, in an mmm bop they’re not there, in an mmm bop they’re gone, in an mmm bop they’re not there, until you lose your hair, but you don’t care.

TTLY xox

Mon, 28 Mar 2011 21:13:56 +0100

We went to see Dr. Edgar, my oncologist on Monday to get the results of my latest scan. She said that my tumour has shrunk again, very slightly. Sooooo happy it is weird her saying this, as i was so used to going to these appointments already knowing it had grew. Now its great to go and know it is stable and even better to know it has shrunk a little.

I have been told that amgen ,the company that supplies the drug, have decided that i can stay on the drug as long as it is benefiting me which is great news. Thank you so much :D.

It was all happy and good news until i had another funny turn and Dr Mclellan, my neurologist wanted to see me about them. I hadn’t had a funny turn since March 2010 and Dr Mclellan was classing them as seizures. I have to wait a year until i can learn to drive, which is rubbish. Oh well, so my mum and dad applied for my provisional licence start of March 2011. So i could start learning to drive after the year was up. No, i had to have 3 more funny turns haha. I asked Dr Mclellan if it was seizure related or not and she thinks it is. So unfortunately I have to wait another year until i can drive, gutted! It’s not the end of the world, my sister will have to keep her car and not sell it until i can drive and afford to buy it from her hahaha.

Love
Rachael.

So its time for the new lyrics.

Black Eyed Peas - My Humps (hump/lump = tumour)

“My hump, my hump, my hump, my lovely lady lumps.”

Lady Gaga - Born this Way (keep your chin up and i’m on track to getting better)

“Don’t hide yourself n regret, just love yourself and your set, i’m on the track, baby i was born this way.”

M.R.I Report

Technique: Transverse images were performed through the brain, sagittal T2 axial FLAIR coronal T1 volume and post gadolinium T1 volume and SPIN ECHO sagittal and axial images were performed through the brain.

The tumour of the clivus measures overall 2.4cm (AP) diameter, 1.4cm (TR) diameter and 3.3cm (CC) diameter. These dimensions are unchanged with the previous examination dated 15/11/10. There is still some indentation into the right medial temporal lobe and the anterior aspect of the cerebral peduncle. Oedema in the brainstem, however, appears less prominent than in November last year.

Conclusion:
Stable or continued slow resolution compared with examination dated 15/11/10.

Fri, 18 Mar 2011 19:35:23 +0000

Hello i have recently been to the conference at Centre Parks, called Find Your Sense of Tumour. The conference was run by the Teenage Cancer Trust. it was fabulous i had such a good time. All the talks were truly inspirational so thank you so much to Sick Kids Edinburgh and Teenage Cancer trust. Dame Helen McCarther gave a talk about her experiences of sailing around the world, she also mentioned that she takes sick teens on her boat for a few days and would sail around the borders. A chef from master chef was also there who is also a comedian. He gave a talk and had food samples for us to try, he wants to improve food in hospitals hope he manages to do it soon hehe. Although it wasn’t all talks there was great parties at night which were fabby but my feet were soooooo sore at the end of the night/the next morning hehe. So we were all crawling back to our villas lol. The villas were lovely also. Overall it was an amazing weekend you meet so much people and make great friends.

I have recently had my M.R.I scan so will be getting the results next week. Fingers crossed everything is still stable. Luckily i didn’t laugh during my scan this time. I have laughed during previous scans and they keep telling me to lie still, as they have to redo parts of the scan. Well i burst out laughing but it wasn’t when one of the pictures were being taken. After that i kept thinking back to the funny bits but i did have to try and not laugh, it was very hard lol. The movie was monsters inc i should have seen it coming really.

Thank you xox

Love Rachael xox

Sun, 13 Feb 2011 18:56:09 +0000

Hello on our next visit to Birmingham my dad came with us this time which was a bit more relaxed haha.

Our appointment was later on in the day so we didn’t automatically go straight to the hospital as usual. We went to the NEC and seen that there was a big show on that sold things to businesses. We knew about it as my supervisor from work goes with management to order knew stock from different companies. Unfortunately we were unable to go into any of the halls but we seen outside them there was a lot of halls it looks massive.

We then went to the hospital for our appointment where we bumped into the guy we met last month and he had just had his first scan since starting on the trial. He was waiting on the results. His fiance and him seemed very anxious about the results as they waited for a few hours but i now know that his results were very positive.

I got blood taken, handed over my pregnancy test, filled in the questionnaire and got my injection. We asked Mr Grimer what was going to happen after the trial finishes in three months? He was not sure, he told us it was only supposed to be for a year. He said he would let us know next month.

After leaving the hospital we didn’t have long until our flight so called a taxi. it was taking ages to come so got a bus back then headed to the airport. We realised that we had been on many methods of transport in one day Car (to the airport) Plane (to birmingham) Tram (from airport to train station) Train (to train station) Taxi (to Hospital) Bus (Hospital to train station) can you think of any more hahaha?

I got the results of that horrible steroid test and (Drum Role) i am still on the tablets boohoo oh well!

Blog Song Quote

Rihanna - ‘Whats my name’

Tumour Saying ‘Ooh na na whats my name, Ooh na na whats my name, whats my name, whats my name’

Love
Rachael

Thu, 20 Jan 2011 20:07:48 +0000

Hello Merry Christmas and Happy New Year
We had a lovely jubbly Christmas here i got the new iphone 4. I love it to bits, keep finding new and exciting things about it. My mum and Dad got a Nintendo Wii and Wii Fit and lots of games. I love Just Dance, it has songs old and new and you follow the dance moves holding the wii remote so it can track if your doing it right. My sister and i like doing the Tina turner song, Proud Mary. I also really like Hey Ya by Outkast. Its endless fun hehe.

So far my treatment is going well and still no side effects. I had another injection last week, however my dad was unable to come so it was just my mum and i. Which was weird as we usually just depend on my dad to do many things but we managed. We were rehearsing what to say when we were in the taxi from the train station to the hospital but we got it right. We think everything was just running perfectly on time that day and we were very early for the appointment, on top of that we had to wait extra for the doctors not so good. It wasn’t to bad, when we were waiting we were approached by a woman whom had been emailing my dad about Denosumab. Her boyfriend has the same tumour as me but in his leg he is also receiving Denosumab. We were both waiting in the waiting room we were all chatting about our experiences and i was able to ask him personal questions about the tumour and Denosumab drug. He had also had radiotherapy so was able to ask him about that as well. It was a great experience and I wish him all the best.

So this month has been good, apart from today when i had to get the horrible steroid test. The one where i get blood taken then the horrible jag in the bum cheek, wait 30 minutes and then take blood again. It went ok, will have to wait a few days. Hopefully the results will say i can come off the hydrocortisone tablets.

Lyric of the month/blog

Outkast - “Hey Ya”
to my tumour (knows how to shrink)

“Oh you think you got it, But got it just don’t get it, Till‘ there’s nothing at Aaaaaaaaaaaaaaaaallllllllllllllllllllllll

Rhianna - “Whats my name”

Love this song right now hehe  “Ooh na na, whats my name  Ooh na na, whats my name Ooh na na, whats my name Whats my name, Whats my name” 
Thanking you xox

Thu, 23 Dec 2010 19:52:34 +0000

Hello i have recently visited Lapland to visit Santa thanks to a lovely charity called F.A.C.E. 
On the day we were leaving, i had to get up very early so i could be at the airport at 5.45, not so good hehe. It then took 3 hours on the plane to get there which wasn’t too bad. When we arrived we were taken off the plane to a bus, we were then taken to a large tent where there were many people. We then changed into boots and thermal suit, the people in charge were telling us to leave our clothes on and put the thermal overalls on top as it was extremely cold. The nurses were saying that this is the coldest it has been compared to all the other years they had visited, not good.

After we had got changed everyone had the choice to travel to the santa land by bus or bob sleigh thingy. So some people were like “yeh bob sleigh that will be fun, never been on one before” ect WORST DECISION EVER,lol it was soooooo cold i couldn’t feel my feet everyone was the same. I thought it would be about 5-10 mins along the road, nope i was wrong it was like half an hour along the road i was nearly in tears lol. When we arrived at santa land we all ran inside as quick as we could lol and had a few cups of hot juice and hot chocolate lol. After that we were in groups i was with another teenager and two nurses we went on a husky ride and a reindeer ride where they pulled us around a track i liked the husky ride as it was faster than the reindeer one and more exciting hehe. There were different parts of the area and some indoor houses one of which santa lived. When we visited him i was like WOW lol he looked really real and his beard was real haha. He gave me a cuddly toy dog that barks hehe and the other teenager in our group got a gift too, before we left he said to us “You must promise to go to your bed on Christmas eve and to not go out clubbing” i about peed my pants with laughter hehe. We said our good buys and got some pictures and then we headed of to things like jet skis but for the snow hehe and we got to drive them around a track which was very fun.

After we had done all the activities we headed back to the airport to get changed BY BUS NOT SLEIGH haha someone told me that it was -35 degrees C so a bit chilly hehe.

It had been snowing on and off all day in Scotland and Edinburgh airport had been open and closed all day. However we were very lucky to return. Before the plane left Lapland the pilot was rushing everyone on as he had a time slot to arrive in Edinburgh. We did get back, my Dad brought me home then i jumped into a hot bath and didn’t want to leave hehe and had a very very long lie in the next morning hehe.

Overall the trip was extremely good definitely different than any other holiday i have been on and it taught me to never complain about -3 degrees C ever again hahaha.

Thank you very much to F.A.C.E and all the doctors and nurses on the trip, i had a fantastic time and i will never forget it.

Sorry its awfy lang laad cheerio hehe

Love Rachael xox

A Merry Christmas and Happy New Year to everyone

Thu, 25 Nov 2010 19:41:44 +0000

For some weird reason my Dad named this “The Magic Bullet” no idea why but oh well fair enough eh.

I have just had my second scan after starting denosumab i was told that my tumour hasn’t grown woohoo so is still the same size as the previous scan. So stable then.

Mr. Grimer told me that he has just got back from a conference in Paris. He met with the Amgen team and a doctor from Australia, who has been working closely with Amgen on denosumab. He told me that they first thought there was an 83% success rate for denosumab. Now they think it should work for everyone with GCT. They have also discovered that once you stop getting the drug, some tumours have growen again. So now they are trying to figure out. Once you get to a stage where you can stop getting the drug, calcification. How often after that you need a top up injection. I think they are talking about three or six months.

I am having hardly any side affects from the drug which is good.

I have recently had quite a few appointments had to get the horrible jag in the bum cheek to check my steroid level. Hopefully it shows thats its all good so i can stop taking the minky tablets, they taste yuck and no more jagging in the bum which sounds good yeh. Also had my scan on the Monday then Birmingham on Tuesday so my veins are not looking so pretty right now (N), it took a few jags in the arm to get some blood from me in Birmingham eek! School has been really rubbish right now because i have missed so much due to all the appointments. I don’t have another appointment for a while so thats good, i don’t know why i am moaning at having a day off school haha. My next appointment is with Dr Sumpter, she’s my neuropsychologist. I have been doing a few test with her, so I’ve got an appointment with her in a while. She’s going to tell me how my brains working. I’ll tell you about it next time.

Now for what you have all been waiting for the Blog Lyric thingy:

Firstly because i wear sunglasses a lot when its sunny lol
someone saying to me:
“you got designer shades, to hide your face, you wear them around like your cooler than me” Mike Posner - cooler than me

My tumour is saying:
“Get me outta here, cause my eyes are burning” Esmee Denters - Outta here

Just because my Dad hates it so much i thought i would just write lots of hehe’s hehehehehehehehehehehehehehehehehehehehehehehehehehehehehehe!

Byeeeeeeeeeeeeeeeeeeeeeee love Rachael xox

Fri, 22 Oct 2010 20:10:49 +0100

Hello!

We have finally sent my scans to Amgen as no Doctors were able to do so as the NHS wouldn’t allow them too, which was rather annoying but my Dad has very kindly copied every single scan i have had from my first one at the victoria hospital to my last one a few weeks ago at sick kids so thank you to him (round of applause) hehe! So if anyone from Amgen is reading this hopefully you have received the sans and see the reduction of my tumour thanks to the Denosumab drug so thank you.

Anyhoo, my friends all clubbed together to got me a helicopter ride ages ago. I could never go as it was always on a Saturday, which is when i work. There was one on a wednesday and that was the day i had an appointment but it was pouring down rain that day so it was cancelled. I rebooked for tomorrow and just having to take a day off work which isn’t too bad, but its my last holiday and the forecast for tomorrow is rain. We are hoping it is going to clear up by he afternoon as it is at 3, so have all your fingers and toes crossed yeh :D.

I am still applying for uni and had a work experience thingy at my local hospital x-ray department. It was really interesting actually so will have lots to right in my personal statement about that. Just need to write it lol.

I have decided to write a lyric of a song on every blog for the banter haha so heres a few:

To my tumour “Pack up your troubles in your old kit bag and bury them beneath the sea” Eliza Doolittle - Pack up
I just like this line as i have lost my keys lol “Where are my keys i lost my phone” Lady Gaga - Just Dance

Fri, 24 Sep 2010 21:51:46 +0100

It definitely is a ‘weight’ of my mind hehe i thought that up after the last blog and thought it was quite funny lol. I also forgot to thank Rob Grimer and Andrea Hughes at ROH Birmingham, for running the Denosumab trial, oops. It is hard to realise if i have any changes for example by eye sight, some doctors are saying they notice a difference in my left eye movement however others don’t, i can be the only judge, I find it hard to see it. My dad came up with this fabby idea to take frequent pictures of me looking up, down and left (I) what a genius eh lol so will let you know if we see any results hehe.

Recently i have been applying for university so had to write my personal statement. i am applying to Queen margaret university for Diagnostic and therapeutic Radiotherapy also nursing and midwifery at Dundee university. So will have to get my head down and study study study to get the grades i need, so wish me luck hehe and if you have anythings you think would be good to write in my personal statement for these courses, let me know please hehe.

My cousin and her boyfriend have had a party, they are moving to Australia. The party was soooo gooood and i was acctually allowed an alcoholic drink :O going to miss them lots but wish them all the best and am sure they will have a fabby time.

Well gtg ttyl lmao rofl cya. xox

Fri, 20 Aug 2010 17:51:43 +0100

I was at the Sick kids Hospital on Monday for my M.R.I. This is my first scan since starting Denosumab.
We went to Birmingham to get my next injection with my mum, dad and sister. I wanted Vicki to come with us as we were receiving the results of my scan. We finally got them and the results were (Drum Roll) the tumour has shrunk by 1.4cm and shows signs of necrosis (death). Wooohoooo, I couldn’t believe it, I was not too sure what they were going to tell me. This means the drug is working, when released it can work for millions of other people with the same type of tumour even if the tumour is in a different location. So hopefully it will continue to work, thank you to Amgen for the drug i don’t know where i would be without it :D Thank you.

Anyway, I’ll let you know about Florida hehe. It was really really good, we got our park tickets from a great charity called Christian Lewis. We also got a special disabled badge which got us in the fast past lane at Disney. At Universal we got a special gold badge which got us right to the front of the queues for the rides. It was amazing, we didn’t have to wait in the heat which is the worst and i dragged my mum and dad on the big roller coaster and they loved the Hulk Coaster hehe. We also visited Harry Potter world which was sooooooo busy haha. There was a 2 hour queue just to get into the area, then you had to queue for the rides. Thankfully we got right on, which was amazing we couldn’t believe it, the ride was cool it was like you were flying and followed harry around Hogwarts. They had also built a massive castle in the harry potter world which looked exactly like the one in the film. Even inside, they had those pictures that moved was great and had all little houses with snow on them for the shops and shows. Oh and obviously we done lots of shopping and got lots of clothes hehe but we managed to fit them in our suitcase lol, so overall was the best ever :D

Fri, 9 Jul 2010 21:01:38 +0100

I have finished my loading dose of Denosumab which is three injections weekly then miss one week and have your fourth injection the next week, i am now receiving the injections monthly for a year. That’s only if my scan shows the drug is working.
The doctors said that there are no serious side effects. After my first injection which was on a Thursday i had an upset stomach at the weekend which has been on and off since i have had the injections therefore some bowel movement trouble. The doctors are unsure if these are side effects of the drug or something else. Also after the first few injections i had a few sore heads probably due to location of my tumour, also slight sore joints on my legs at points but definitely nothing serious, which is great.
There are also others going to be started on the trial in Birmingham. If there are any questions just ask hehe.
I got a letter the other day telling me that my next MRI is on the 16th August. This will be my first scan since starting the Denosumab trial. According to Mr Grimer the trial states that you have to wait 3 months before getting your scan.
They also told us the last time we were at the hospital, the people from Amgen had visited the Hospital to check they are conducting the trial correctly. Serious stuff then.

So it is summer now woohoo and i am off to Orlando Florida tomorrow with my mummy and daddy lol, cannot wait, will be great to get away for a while. We are visiting both the universal parks and most Disney parks, some water parks and lots of shopping hehe.
Although all my friends are away to TITP, which i wanted to go to but would rather go to florida lol. TITP stands for T in the Park which is sponsored by Tennants lagger. It is a massive music festival in Kinross, Fife, Scotland.There are great artists playing there this year such as Muse, Dizzee Rascal and Eminem ect. It is on from friday morning to sunday night most people take tents and camp all weekend in the fields and get very drunk. This year, as it is Scotland its going to be heavy rain most of the weekend. The fields will be very muddy haha, so glad i am not going this year but really want to go next year for my 18th birthday present. The tickets are really dear because its so popular, its about 85,000 people there, so hopefully get to go next year and the weather will be good.

Sun, 4 Jul 2010 21:36:56 +0100

Happy 17th Birthday, Rachael.
Lots of Love. Mum, Dad and Vicki

Mon, 28 Jun 2010 20:57:14 +0100

Hello, thank you to everyone that donated to CCLASP for my Run thingy. Well i done it yesterday along with Alison and Stacey who i have been training with. I had great support from them while doing the race as we slowed down when someone needed a rest and then kept a steady pace throughout. We finally got it finished in about 25minutes, couldn’t believe it but I was absolutely exhausted after it haha. We kept thinking it was just a wee bit to go, it wasn’t haha. The hills were not too steep but they were really long, there was down hill too, so we were wishing we had a skateboard to fly down them lol. So thank you i couldn’t have done it without everyones support.

Got me 4th Denosumab injection tomorrow, so same time at the hospital tomorrow, it should have been last Thursday. Because that grimmer dude couldn’t make it, it was moved to Tuesday

Its the last week of school this week so can’t wait to get away on holiday to Florida WooooooHoooooo!
Hope you all have a lovely jubbly holiday hehe :Dxox

Sun, 30 May 2010 16:26:26 +0100

Hello, my lovely sister kindly done my last blog so its back to me now.
Had my first injection of denosumab on thursday, was not bad. This is the first trial of this drug in the UK, lucky me I’m the first to receive it. Just annoying as we had to get up at like half four to get the plane at ten past seven and we arrived in Birmingham 45 minutes later which was much better than a 5 hour train journey. I haven’t had any side affects so far.
When we arrived I had to fill in this questionnaire which I will have to do every time. The nurse who is running the trial with the consultant. A lovely woman called Andrea. She is very organised. Took my blood, she had a car and driver waiting to take the sample to the labs, they don’t have one on at the hospital. My blood was to be spun on the centrifuge, to be tested for antibodies. Part would be kept in Birmingham, the rest sent to Amgen in America. She told us to come back at 1.30 p.m, she would have the results by then and she could give me the injection.
We went for some lunch and went back to see her. Mr Grimer was there, he is the consultant running the trial. He is very nice to me, not to serious and likes a laugh. He did all the usual tests. Andrea asked where I would like the injection. The injection is subcutaneous, which means just under the skin. I had the injection in my stomach because it had to be in a flabby area lol so will keep you updated byeeeeeeee xox

Fri, 21 May 2010 19:17:34 +0100

Awright folks. Vicki here. (Rachael’s sister)
Rachael is away out with her friends tonight so i though i would have a go at this. Rachael is fine. She is quite tired still and has some weakness down her left side. She went to see an occupational therapist last week and they gave her a few exercises to do to improve the movement in her arm and hand. My mum, dad and I have been helping her do the exercises. We got an email from Birmingham saying that she has been accepted on the denosumab trial and her first treatment will be next thursday. We are all really happy that she was accepted because this drug has a very good chance of working to stop her tumour growing. She has been studying hard for her biology exam., however.... her exam is the day she will have to go down to Birmingham, so , she won’t be able to sit the exam. Rachael will be the first person in the UK to receive Denosumab. Hopefully the trial will be a success and the drug will be allowed to be given to others with the same type of tumour as Rachael.
Rachael will get injections every week for the first three weeks. She will then get another one two weeks later, then monthly for a year.

Love
Vicki

Mon, 26 Apr 2010 20:00:04 +0100

All right girls and boys, how are we all?
well just had our wee trip to Birmingham and it was good haha. Well we met the consultant that is in charge of the trial and they examined me, took blood and urine sample. They also had all my scans, biopsies and consultants reports from Edinburgh. I also got 10 pages of information to read on the first day. We had to go back the next day, I had to wait 24hrs before I could sign the consent form, which I did. Mr Grimer has sent all the information onto Amgen, the company that owns the drug. They then look at all the information and decide if i get the drug, Denosumab.
So if i get on the trial I will go down to Birmingham every week for 3 weeks, then every month for a year woohoo. My cousin pointed out that although a year sounds long, it would actually just be 12 times, so this made it seem not so bad.
Well we were not long at the hospital at all, so went shopping at the shopping centre called the bull ring and it was absolutely massive. We were hunting for one of my favourite shops Jane Norman and bought a bag haha. I love buying a new bag lol and bought some tops at other shops.
In conclusion the Birmingham trip was great, except the train journey was a bit tiring. We were supposed to fly down, because of the volcanic ash we had to train it.Walking from the B&B to the train station and then to the hospital. We finally found shortcuts. Our legs and feet were very sore lol. So was pretty koowal see you all later
Love
Rachael

Sun, 4 Apr 2010 20:58:51 +0100

Since FYSOT i have had a busy few weeks due to having more transphenoidal surgery, courtesy of Dr. Doom (Mr Statham), thanks again which was another biopsy as my doctors had thought my tumour had turned malignant. Thankfully the results came back benign so my tumour is still a Giant Cell Tumour woohoo. This means i will hopefully get on this new drug trial taking place in Birmingham. The drug is called Denosumab (not a scooby how you spell it sorry) i have a meeting with the people running the trial on the 22nd of April. They will decide if i can get it, fingers crossed. My dad found out i have to be 45kg or over, to be accepted on the trial, I have lost a lot of weight due to loss of appetite and i am exactly 45kg right now. I have to fatten up a bit so eating lots o full fat diary stuff right now hehe. For the trial i have to get the drug once a week for the first 3 weeks then every month after. Thats only if i can get on the trial my dad just reminded me lol. So i really hope i do get on it as i have been told it has shown good results. Well my doctors are having a meeting on Tuesday to decide if i should have an operation before the treatment. They are thinking of going ahead with the craniotomy, if it would help me.

Anyway on a happier note i have had my special day that the willow foundation organised for me. I wasn’t sure if i would be able to go as i got out hospital on Friday and it was on Monday. I went anyway to Crief Hydro to be pampered with my mum who brought my Auntie, my sister and my friend, i have known since i was very young. It was great the first day me my sister and my friend all got a facial, my skin felt great after it but my hair was sticking up because of the moisturiser was rubbed in to it. My sister and friend got hair bands to cover their hair so it looked fine and we were all laughing at my hair haha. We stayed for tea and went back to our executive suite. My mum and auntie were not included in my special day, they were there as responsible adults so they had to book a separate room . The next day me my friend and my sister all got a massage which was very relaxing, we had to lie on a bed with a whole in it hehe. After that we got a full manicure and i got my nails a shiny red, they are absolutely gorgeous. The women who was doing them gave me some nail care tips as i mentioned i liked doing my nails hehe. My friend got shiny dark blue polish hehe and my sister got a similar to me. We came back and we were all refreshed it was lovely. I will put picture of the days on the site so ya’ll can have a wee looky. Its a great place and the meals were delicious. I had duck, we went to the less formal restaurant than the formal one. So i encourage anyone to go to it, it was very busy as it is the holidays, especially the pool. My mum got us into the adult spa which was much quieter and had a sauna and steams room, it was great have i mentioned that lol. So i shall finally finish this blog entry haha hope you all had a good easter
Love Rachael xox

Sat, 20 Mar 2010 22:43:17 +0000

I have to write this blog as Rachael is not here. She is in Nottingham at the Teenage Cancer Trust conference, My sense of Tumour. What little we have heard from her, she’s having a great time.

Last weekend Rachael was really unwell, she was having these funny turns, as she calls them every half hour. She looked really ill and we were worried. This was the purpose of the 24hr EEG, to see if these turns were seizure related. By Monday they had calmed down a bit.

We were at the hospital on Monday for Rachael’s 24hr EEG and also the results of her latest MRI.

We met with Dr. Edgar and one of the neurologists. They told us that the Bisphosphonate infusions hadn’t worked and that her tumour had grown again, quite considerably. Dr. Edgar went on to say that because of the aggressive nature she thought it had turned malignant. Seemingly this can happen to these tumours after radiotherapy. They went on to explain that she wanted Rachael to start chemotherapy without delay. even if it was benign She had also arranged an appointment with Mr Statham, Rachael’s neurosurgeon as they want a biopsy to confirm this.

We all just sat there, we didn’t say much, just shocked. Rachael was fine, no tears. I think we all knew it was coming.

We returned to the ward Rachael got these electrodes glued to her head , 24 of them I think. These connect to a box on her side and this records her brain activity. She had to stay in her bed as much as she could as there was a video camera recording her. It was a long and boring 24hrs for her.

Dr. Edgar had explained to Rachael that she would have to get a central line fitted, if she were to get chemotherapy. This is a tube that is inserted under the skin into the main artery and a connection is left under the skin. It is called a portacath. Before leaving we went down to another ward and they had a plastic model, which showed how it is fitted and the nurse explained it to us.

We met with Mr. Statham aka Dr. Doom as Rachael calls him. He told us that he could do the biopsy on the 30th March. This would be similar to her other surgery’s, through her nose, transphenodial. We told him about the chemotherapy plans and according to him it would only work if the tumour was malignant. Therefore if the biopsy comes back benign then it’s back to him for a craniotomy.

Yet again we seem to be getting conflicting information.

Through a bit of research we have managed to get in contact with the team running the Denosumab trial in Birmingham. I have been in contact with the consultant running the trial, he is aware of Rachael’s status and informed us that she would be a good candidate if her biopsy came back benign.

Fri, 12 Mar 2010 20:54:08 +0000

Heeeeey Hoooo! I have recently had my MRI scan and will be getting the results on monday 15th. Hopefully the tumour has shrunk or stopped growing ,so i don’t need anymore treatment or surgery, so fingers crossed.

i have also been having these ‘funny turns’ as my family and i call them, this is when i suddenly get a bit hot and feel sick and shakey and my heart is racing. We have mentioned this to all my consultants and they don’t have a clue but are going to do some tests like the one i am getting on monday. Its called an EEG which consists of sticking sticky circle things to my head so you can see my brain activity to see if my ‘funnny turns’ are linked to my seizure or not. The test will last 24hours, so will have to stay in hospital overnight. I will also be videoed during the test. During this test the Endocrine department is going to test my blood and urine as there is too much salt in my blood. They believe this may be why i am getting these ‘funny turns’. Mr Strachan my endocrine consultant, would also like to put a heart rate monitor thingy on me to measure my heart rate, when i have these ‘funny turns’ which is called an ECG. This is booked for 24th March and will have to wear it for 24hrs, then return the machine. I will have to have a ‘funny turn’ when i am having these tests or it won’t tell them anything I am currently getting at least three ‘funny turns’ a day so hopefully will have one during these tests.

After the EEG test on that week on Friday i will be going to Centre Parks, with other kids from the Sick Kids Hospital. Which will be a good wee holiday it is a mixture of spa thingys and parties there is a Mama Mia party haha which will be interesting lol.

Sun, 7 Feb 2010 19:27:04 +0000

Greetings fellow giant cell tumour patients and others hehe
I have recently had my second Bisphosphonate infusion thingy mabob and it was fine didn’t feel rubbish the next day like last time. Still had a day off school just incase i did hehe, but i was also very tired. I had just done my hospitality prelim in the morning before going to the hospital. The prelim consisted of cooking a three course meal in two and a half hours which was very stressful and extremely hot in the room due to cookers and grills and hobs on most of the time, thankfully i managed to serve all dishes, WooHoo go me. For the result I got a B. I also had two other prelims Biology and English which went ok but didn’t get my quotes for english until the night before haha. I am so glad i only had 3 prelims as i dropped one subject, because it was to much for me after the seizures and i do higher maths over two years. Therefore will just do the final exam next year which i am not looking forward to. We do NABs which is a test on the unit you have just done, we get these through the year. I think i did very well on the first NAB but i just done my second, for unit two but didn’t do as well on this one but oh well. I did miss some off the work due to being off which sucks. Anyways I got my Biology results back, i got 60% which is a pass and a C5 which is good but not what i had hoped. I need an A or a B to do higher next year which i want to do because i want to be a nurse or a midwife, so wish me luck I get that in the final exam.
Anyways I am feeling great except from the odd weirdo feeling when i feel kinda sick, I am also going to Nottingham with the teenage group at Sick Kids we are going to Centre Parks. Its called find your sense of tumour lol, which will be good its a conference thingy for teenagers with illnesses and stuff with party things.
Oh i am also getting a special day organised by a charity called The Willow Foundation they have organised a Spa Day at Crieff Hydro, which is a swanky hotel. I will be getting spa treatments along with my great friend Natasha and my sister Vicki. My mum and Auntie are also coming along and staying over. Natasha, Vicki and I are staying in an executive suite, very posh.
Thank you to everyone from around the world who sends me emails. I read and reply to them all. They are all very encouraging and cheer me up.
Well i will let you all get on with the rest of your life, i have took up enough of your time so until next time see yaaaa later.

Sat, 9 Jan 2010 20:37:18 +0000

Greetings, I’m back hehe, did you miss me.

I had a lovely Christmas and got lots of pressies from Santa, i also had a good new year at my friends house. I couldn’t have a drink because of these seizure tablets i am currently taking. I had some irn bru the whole night which makes me hyper because of these tablets so i guess i will be a cheap night out haha.
Hope everyone reading this also had a good Christmas and New year and all the best for the wonders,
Over Christmas and New Year we had to decide what i would have next, either surgery or have drug treatment instead. We decided to go with the drug treatment for 3 months and if my tumour continues to grow through these 3 months i will have surgery.
I was at the hospital yesterday for my first treatment which wasn’t too bad but unfortunately i am not feeling very well today. the doctors said this might happen.
Yesterday was a really long day because i had to have a kidney function test before i could get the drug. this test consists of testing blood and urine, we had to wait on the results which came back fine.
I also met with Dr Mclellan yesterday, she is my neurologist. I told her the problems i had been having with the seizure tablets and she changed me to a newer type, which releases the drug slower into my body throughout the day, the main point of the meeting was that she said i could still go to Florida in the summer woohoo!
I have to go back on the !st of February for my next Bisphosphonate infusion which is during my prelims, it shouldn’t take as long as I won’t need another kidney test.
We now have a villa in Edinburgh, only joking. The charity clic sargent have a massive house next to the hospital, we were told we could stay there the night before anytime i need to be at the hospital early in the morning, instead of getting up really early and rushing to catch a train or drive.
Hope you are having good weather where you are instead of this cold weather we are having here but at least the snow is here. Me and some of my friends went sledging at the local park and golf course before Christmas, it was a laugh, i am such a child, who isn’t when its snowing.

Love Rachael

Thu, 24 Dec 2009 19:48:29 +0000

Mon, 21 Dec 2009 21:40:38 +0000

Rachael hasn’t been that great this past week. She has been really tired, sleeping enormous amounts and was unable to go to school. Which is really unlike her. She has been going to bed at 9 p.m. and not getting up until 10 a.m. and then napping in the afternoon for a couple of hours. Her short term memory is still a problem to her, which really frustrates her.

Rachael is on two anti seizure drugs. One is fast acting which she was given just after her seizure. She was given another drug prior to being discharged from hospital, which is slower acting. She has to keep taking both of them until the slower acting one builds up in her system. Rachael got blood taken at the hospital on Thursday to check her phenytoin level. Dr. Mclellan called us on Friday to let us know she could stop taking the fast acting drug, as her level was too high.

We had a meeting with the dynamic duo, Mr. Statham (neurosurgeon) and Dr. Edgar (Oncologist) last Thursday. It was a pretty intense meeting, lots of awkward silences and raised voices, usually by me.
I wont go into all the details basically it went like this:

Mr. Statham, surgery is still an option. This would remove the part of the tumour that is growing, it may remain stable but may also grow back. The main part of this, is the risk involved, paralysis down one side and Rachael’s eyelid remaining closed. We do not know the percentage risk factor, were waiting on a call back about that.

Dr. Edgar, give Rachael Bisphosphonate infusions, this is a drug used in osteoporosis to strengthen bone. As her tumour grows from the clivus, which is a bone in her skull. This may halt the growth. There is a trial for Denosumab to start in Birmingham next year, Dr Edgar has been in touch with the professor who is running the trial and Rachael has a good shot of being accepted. We would have to go to Birmingham for this treatment. Previously Dr. Edgar had said that she would be able to get this drug. This now does not seem the case. The team in Birmingham would have to assess Rachael prior to acceptance.

Anyway they gave us the two options and we have to decide. We have to meet Dr. Edgar this Wednesday to let her know our decision. Man what a decision, we can’t even decide what to have for our tea, (chip shop, seems popular Adrian, family joke).

I know what your thinking, go for surgery, then treat with Denosumab. Unfortunately Rachael would only get accepted for the trial if there is a measurable amount of tumour.

If we go for surgery and something happens, paralysis, her eyelid closing permanently or her tumour growing again in a couple of weeks. How would we live with that. On the other hand she may come out of it fine and the tumour may never grow again.

If we go for the drug treatment and it doesn’t work, the tumour continues to grow and causes her more problems, which may be irreversible. On the other hand the treatment could work and could and stop it from growing.

Rachael would like to go for the surgery, she is petrified of the possible side effects. The thing is Rachael was psyched for the surgery, ready to go now they throw this in.

Anyone else out there having to make a decision like this at christmas? email us, we could swap notes, ha ha

DECISIONS, DECISIONS

Thu, 3 Dec 2009 21:02:01 +0000

I have to write this blog as Rachael Can’t remember what happened.

Rachael had a full blown seizure on Monday night.
She had been unwell since Sunday night, having dizzy spells and feeling generally unwell.

She went to school on Monday morning, she came home at lunch and lay on the settee. During the day I had phoned the oncology department and told them of Rachael’s symptoms. They called back and said to bring her through on Thursday.

At tea time she knocked her glass over and was unaware she had done it, she was out of it not responding that well to us. We helped her to the settee. I went and called the oncology department, Dr Edgar agreed that she must be seen tonight, she advised me that if she was unable to go by car I should dial 999 for an ambulance.

I went back to see her and she was not right. My wife and I agreed that we should call an ambulance to take us the 30 miles to the hospital. I was on the phone to the emergency line when I heard a scream and my wife shouting. I ran through to the living room to witness the most frightening thing I had ever seen in my life. Her body was shaking violently, her face was contorted and my wife held her until the seizure stopped. I was screaming to the guy on the phone to get an ambulance. The guy on the phone was brilliant he stayed on the line until the crew arrived, telling us what to do.
A HUGE appreciation to my wife Fiona, she new exactly what to do. She works with special needs kids who have these seizures occasionally. I was so glad she was there.

The paramedics were excellent, so calm. Once the seizure had stopped, Rachael was unconscious. They put a cannula in the back of her hand and gave her drugs. Seemingly the brain shuts down after a seizure. They gave her oxygen and she came around a bit. They put her in the ambulance and took her to the local hospital, my wife went with her and I followed in the car.
Once at the hospital she came around even more, the doctors prepared drugs incase she fitted again. They phoned the sick kids hospital in Edinburgh who confirmed they were waiting on her. The hospital arranged for an ambulance to take us but due to shift change and other emergencies we had to wait a while.

Once at the sick kids accident and emergency she was seen right away, they examined her, took a history, weighed her, this was to make up the right amount of drugs incase of another fit, they took blood and generally looked after her. The doctor left the room to phone the neurosurgeons at the other hospital. Rachael started looking at the corner of the room. I was talking to her and she would not answer she was away with it, we were shouting at her to answer but she just stared into space. We were terrified, we shouted on the doctors and all hell let loose. There were doctors and nurses everywhere. To cut a long story short, this happened a total of 3 times. So we count 4 mini and 1 full blown seizure.

Eventually they got her settled. The neurosurgeon at the other hospital told them to give her a CT scan this was to check for tumour growth. Once the on-call radiographer had come to the hospital. The doctors and nurses prepared to take her through for a scan, the nurse wore a back pack and the drugs were at the end of the bed. The doctor came as well this was just in case she had another seizure in the CT scanner.

After a really long night she was eventually transferred to high dependancy given drugs to stop the seizures. The high dependancy room was amazing, one to one nursing every scary machine you could imagine. She got settled my wife stayed with her and I drove home at 4 a.m

Late afternoon on the Tuesday she was transferred to the neurological ward, she just kept sleeping. This was due to the trauma of the seizure and the anti seizure drugs, she was also still confused and actually seemed drunk. Her muscles were also aching.

Wednesday she was given an EEG, this was to check her brain, this came back clear. The neurologist came to see her and explained that she would have to stay on these drugs. The ones she is on are fast acting, she has to keep taking them while we build up the other ones as they take a while to build up in her system. Then we can stop the fast acting ones. Rachael will see the neurologists in three weeks to check the levels in her blood.

We got out of hospital at tea time on Wednesday. Once home and settled she was still really forgetful, she was really frightened that this would be what she would be like for life. The neurologists explained to us prior to leaving that she would be like this for a couple of weeks just until the drugs got into her body. Today she is still really tired but a great improvement already in her memory.

A BIG thanks to everyone at the Victoria Hospital and The Royal Hospital for Sick Children. Everyone was brilliant and so attentive, nothing was to much bother, even a cup of coffee for a weary dad at 3 in the morning. Everyone bitches about the NHS, we must admit we could not fault them, they were brilliant.

Sat, 28 Nov 2009 21:31:20 +0000

We went to see Dr Edgar last Wednesday, she said she had a call booked with the professor who is doing the clinical trials for Denosumab in Birmingham to find out more information about it. She told us that it would depend on the results of the biopsy of my tumour to see if it had the right receptors for this drug to work. Obv if it does not have the right receptors the drug will not work. In this case the options would be more Radiotherapy. She said that she would talk to Dr Peoples about Stereotatic Radiosurgery as this is part of her field of expertise.

The hospital have arranged a day trip to Lapland to meet Santa woohoo! the trip is organised by a charity called FACE (Fight Against Cancer in Edinburgh). Not too sure if i am going to go yet. The hospital have also offered me a day out as well, to do anything i want. I have not decided what i want to do yet, maybe a trip to London shopping or to go see a west end show or go to a music concert or a big party hehe. Decisions decisions. It is funded by a charity Willow Foundation.

Mr Statham aka Dr Doom emailed us back, thank you for that. Here are the questions and answers.
A. how long will it take me to recuperate after surgery?
A. Approximately 6 weeks
A. Can i still go to Florida in the summer?
A. Yes
A. Why can you not remove all my tumour?
A. Difficulty in removing all the tumour is that it goes through an important structure called the cavernous sinus. The carotid artery runs through the middle of this. Damage to the carotid artery will produce a bad stroke, so must be avoided.
Multiple nerves also runs through it, taking sensation from the face, and taking messages to the muscles around the eye, and eyelid.
Q. What would happen if my tumour was to grow back after surgery?
A. If the tumour grows back the options would be further radiotherapy or further surgery, neither of which would be easy. Stereotactic radiosurgery could be considered, and is available in the western.

Thank you for reading catch you later, ciao ciao.

Love Rachael xox

Thu, 12 Nov 2009 20:40:07 +0000

Looks like i got talked into doing this blog again, i think its because i am a fast typist.

We met with Mr Statham (neurosurgeon) yesterday, who did my transphenodial surgeries.

He went onto tell us my tumour had grown. He brought my scans up on the computer screen to show the difference in size. It was quite a large difference. He also explained that part of the tumour is stable but the other part has grown and he plans to remove this part by entering through my skull, this operation is called a craniotomy. He is going to remove one section of my skull thus allowing him better access to the tumour, although he mentioned it is not possible to remove all the tumour due to all the vital structures surrounding it. I will not have to get my hair shaved off just a strip where he will make an incision to enter my skull. the operation will take roughly 4 to 5 hours and i will be in intensive care for 24 hours afterwards, this is one to one constant nursing. I will have quite a lot of bruising around my right eye and face, i will be in hospital for one week if all goes well and i recover quickly.

The side effects of this operation could be that my right eye might remain closed, there is a slight possible chance that i will have a slight weakness on the one side of my body, which scares me.

Halfway through the meeting he got his diary out and said to me how about the 12th of January, so i guess that’s when i am getting it, which is near the time of my prelims again which i missed last year as well because of the operations.

We asked many questions:
Can you inject the part of the tumour that cannot be removed during the operation with something that will stop it from growing. His reply was that it has proven to not work as it has been tried before using pure alcohol.
What would happen if i did not have the surgery. He said that it would continue to grow and into my brain causing me to have blackouts and fits and some kind off dejavu experiences.
What can be done if my eyelid is closed after the operation. Dr Doom explained that i could have plastic surgery to open it, fingers crossed i don’t need it, so he better be careful when in there.
Since i have already had radiotherapy, is there a back-up treatment to kill any bits that may grow again. Yes, there is a form of radiotherapy which is a one shot deal called Stereotactic Radiosurgery.
Dr Doom realised that we would have loads of questions after we left so he gave us his email address, so we could ask him any. As soon as we left the hospital we thought of more, tune in for next week for the questions and replies as we just emailed him tonight.

Love Rachael

Wed, 4 Nov 2009 19:30:34 +0000

I thought i would write this blog as my dad’s rubbish at it hehe.

Yesterday we went to the Sick Kids Hospital for a meeting to find out the results of my MRI scan i had in October. The meeting was supposed to be with Dr Edgar and Dr Peoples but Dr Edgar was on holiday therefore Dr Mark (something) was taking her place.

They explained to me that part of my tumour had grown approximately 5mm in one dimension and (something)mm in the other dimension. Obviously this was not the good news i was expecting and i cried like a little girl haha.

They explained that the radiotherapy had not worked. Which annoyed me as it was pointless going through the radiotherapy.

They said that the next step was more surgery. I have to meet with Mr Statham (neurosurgeon) who done my last two operations next Wednesday to find out about what type of operation i will be undergoing and all the side affects. According to the doctors at the meeting they seem to think it will be a big operations woohoo!

Dr Edgar, when she is back from her holidays, will meet with us to tell us about a new drug she is looking into called Denosumab which stops these tumours from growing.

After all information has been collated a decision will be made, however i am not experiencing any headaches or any other pain only have double vision when looking left, up, down and still have droopy eyelid, so the surgery and treatment may not be in the immediate future. I will have to wait and see what Mr Statham says next week.

Also i have had the second of my cervical cancer jag which is not too sore but my arm kills after it, especially when my dad nudges it! Also i am getting the swine flu jag and normal flu jag woohoo go me!

Love Rachy xox

Wed, 28 Oct 2009 21:08:37 +0000

Rachael hasn’t been that great this past week. She has been getting dizzy spells, hot flushes and a sore throat. She is also really tired. We doubled her steroid dose. We got a leaflet from the metabolic unit that tells you if you are unwell this is what you have to do. Seemingly your body does this naturally, since Rachael doesn’t produce steroids she has to take twice the amount if you have flu or anything like that. We took her to the doctor, he checked her over and everything seemed fine. He advised us that Rachael should get the flu and swine flu vaccines this year. She seems to have perked up a little over the last couple of days, maybe just a touch of the cold or something.

Rachael has an appointment next Tuesday 3rd November. A consultation with Dr Edgar (Oncologist) this is to give us the results of her last scan, metabolic unit results and ophthalmic results. Fingers crossed.

Sat, 17 Oct 2009 20:33:15 +0100

It’s been a busy week fro Rachael. Good job she’s on holiday from school.

On Monday she had her latest MRI scan at the Sick Kids Hospital, Edinburgh. According to Rachael the scan went well, she was in for about an hour. They have a TV in the scan room, there is a mirror attached to the headset, this gives them the picture from the TV. She was bummed because she didn’t get to see the end of the movie. As per usual when they inject the dye in her arm, they get it everywhere.

On Tuesday night, the Teenage cancer trust organised an event for 16 to 25 year olds. This was for kids, male and female from the Sick Kids and Western General Hospital. It was held at the Maggies Centre at the Western General Hospital, Edinburgh. The Event was called, Look good feel better evening. When we arrived, there was a room set up, there were beauticians, they helped by giving beauty advice. Rachael told me the beauticians were from chanel and were movie makeup artists. When we returned to pick her up, everyone came out the room looking beautiful all made up and most importantly smiling. They were all given a bag full of cosmetics and perfume. According to Rachael it was full of high quality cosmetics. Hey what do I know.

On Thursday morning Rachael was at the Metabolic unit at the Western General Hospital. This was for her steroid test. She absolutely hates this test. The nurse takes blood, they give her an injection in the bum cheek, this is the part she hates, she says its really sore especially when the fluid goes in, she goes away for half an hour, then they take more blood. Needles and the like don’t bother her, for some reason this jag really hurts. The doctor phoned us on Friday night, Rachael still has to keep taking the steroids everyday. We had a look on the net at a medic bracelet as it looks like she’s going to be taking them for a while. These bracelets allow for engraving on the back and are recognised by the medical profession. In the unlikely event she is in an accident and taken to hospital, the information is invaluable.

The other night I was messing about with this web site. I asked Rachael about changing the picture on the about me page. She agreed and chose a picture of her and her sister Vicki.
Don’t I have two beautiful girls.

Sat, 26 Sep 2009 19:22:03 +0100

It is a year to the day since Rachael’s tumour was detected. Man What a year.
To this day I don’t know how we all managed to get through it, especially Rachael. She has been amazing, coping with everything that has been thrown at her, attending school, studying at home and sitting and getting excellent grades in her exams. Also carrying on as normal as possible.
I think one of the lowest points came after her second surgery. Mr Statham, her neurosurgeon wanted an MRI 48 hours after her surgery, this was to check if there had been any growth in the tumour, which went ahead. We came home from the hospital on the Friday. I came home from my work on the Monday night and my wife was on the phone. I asked who it was and she replied, Mr Statham. She promptly told him that I had just come in and would you explain to him what you just said. I took the phone Mr Statham told me that he had checked Rachael’s steroid levels and they were fine. He went on to tell me that he had looked at her scans, sure enough there had been growth within the 48 hours. He then went on to say that he had been in touch with Dr Edgar and he thought the best thing for Rachael was chemotherapy.
My wife and I discussed it and had decided not to say anything to Rachael as we had an appointment to see Dr Edgar on Thursday. Rachael asked what her favourite neurosurgeon wanted. I told her that she could stop taking the steroids, she knew he had said more as I was on the phone to him for ages, so I, after a lot of question eventually gave in and told her what he had said. Rachael burst in to tears and told us that she wasn’t having it. The four of us stood in the kitchen in a group hug everyone crying.
We went to the appointment on the Thursday, expecting Dr Edgar to tell us all about chemotherapy. Not the case, she told us that the consultant radiographers had time to have a better look and now thought that the growth was actual swelling from surgery. There would be no chemotherapy instead we would be going with the Radiotherapy as originally planned.
The Radiotherapy would be happening as soon as possible.
This has happened again to us after her scan on 3rd June, her first scan after her radiotherapy. They told us after the scan that there had been growth. This was another devastating blow. Yet again after they had a chance to have a better look at the scan, they decided it was swelling from the radiotherapy. Now we wait until everyone has had a long enough look at the scans.
A bit of good news this week for Rachael. She is doing fine. No change in her vision. The news is she has managed to get herself a Saturday job at a local department store. She went for an interview the other week, when she came back I asked her how it went. She replied, “guess what the first thing the woman said to me”, obviously I replied “I don’t know”, the woman had said to her “oh you have different coloured eyes”. (her bad eye looks black because her pupil is constantly dilated). We both laughed and off she went. She didn’t tell the woman why they look different.

Wed, 2 Sep 2009 20:59:03 +0100

Rachael, my wife and I were at the Sick Kids Hospital today. We had a meeting with Dr. Angela Edgar, oncologist and Dr. Sharon Peoples, oncologist.

This was basically a meeting just to see how Rachael was getting on. They asked how she was feeling, headaches and double vision. Rachael told them that she hadn’t had a headache for a long time. She went on to tell them that the double vision was just the same as the last time we saw Dr. Edgar. Rachael explained that the double vision down and up the way, didn’t bother her too much, the double vision to left really bothered her and her pupil being permanently dilated. The problem with the pupil is bright light as the pupil can’t constrict. we were at the fringe in Edinburgh the other week. On the way home Rachael sat in the front of the car, it was pitch black, the car headlights from the cars coming in the other direction, really bothered her and she had to sit with her sunglasses on.
Dr. Peoples went on to explain that sometimes it can take up to eighteen months before if any further shrinkage occurs. Dr. Edgar told her that her eye might not ever improve. Dr. Peoples asked if she was tired, Rachael told her that she was fine, but by the end of a school week she was getting tired.
We asked about the treatment that she had wrote to the professor in Birmingham about, sorry can’t remember it’s name. Dr. Edgar said he had not replied to her letter yet. She was quite sure the treatment should work and she would be able to get it for Rachael, should her tumour start growing again. We didn’t understand the statement, “we should be able to get it for her” I don’t know if it is a money thing or something else. We also asked about Mr. Statham, Rachael’s neurosurgeon, Dr. Edgar told us that he was still informed about Rachael and he was primed to look at Rachael’s next scans and would be involved in the next meeting about her. We went on to tell them that Rachael was also feeling cold all the time, both the doctors agreed that her thyroid gland could have been affected by the radiotherapy. They took a blood sample and will let us know the results.

Rachael has her next MRI scan on the 12th October, eye appointment with Dr. Fleck on the 22nd October and an endocrine appointment to check her steroid levels. After all these appointments the doctors will have all the latest information and will have there meeting, as they do every month. We will then meet them on the 3rd November.
Before we left they told us that if there was any change in her vision or the headaches came back we were to contact them immediatley.

Wed, 5 Aug 2009 22:15:21 +0100

Rachael is doing fine. Her vision is just the same. We had a call from her consultant the other day telling us that the scan she had on the 16th was unchanged. She went on to tell us that she has talked to Rachael's neurosurgeon and had written to a professor in Birmingham about a treatment to shrink tumours. This treatment is seemingly used in cancer that has perhaps started as breast cancer then spread to the bone. She is unsure if it would shrink Rachael's tumour hence the letter. We have a meeting on the 1st of September, perhaps they will have some answers then.

Rachael got her standard grade exam results today. She had been really apprehensive about this, the last couple of days. She got six 2’s a 1 and a 3. She has done extremely well considering the amount of school she had missed. We are very proud of her achievements.

Sun, 26 Jul 2009 21:46:30 +0100

Rachael has made some good progress these past few weeks, not physically but mentally.
After her radiotherapy she had three large patches on her head that were bald. As time has passed her hair has started to grow back in the patches, it is about 1 inch long now. Rachael was always very self conscious about this. She changed her hair style, so as to cover the bald patches. She wouldn’t wash it my wife had to do it, she wouldn’t go to the hairdressers, my sister had to come and trim her hair, she wouldn’t go swimming.

The other week she decided that she wanted a new hair style. My wife made an appointment for her, she washed her hair before going, she didn’t want them washing it. She came back with a new style and quite happy with it.
Rachael has started going back in the shower now, she used to have baths, she didn’t like the shower hitting her bald patch and especially touching it.
As she is on holiday from school now, along with my wife. Rachael and my wife went swimming. She had to wait six months after her surgery anyway. They went swimming and according to my wife Rachael wasn’t that bothered about her patches showing.
I know this may sound trivial, for us it is real progress. I know people that have been through radiotherapy and chemotherapy and lose there hair shouldn't bother. It’s not the people with the baldness, it’s us staring at them.

The meeting was to take place on Friday at the hospital to discuss Rachael’s case. They said they would phone to let us know what happened.

Fri, 17 Jul 2009 21:05:50 +0100

As I said in my previous blog we had been in contact with a girl in London. As she is not my daughter I cant tell you her name. We have also had contact from a girl in Canada and America. So that’s four, who all have the identical tumour. If your reading this and have this tumour drop us a line.
Anyway the girl in London had her operation on Tuesday, this was a massive operation, I wont go into details, it’s not my place. Her Father emailed me on Wednesday night to let me know they had managed to remove all the tumour, she is in intensive care but recovering well. To remove all the tumour is truly remarkable.

Get well soon, all our love and best wishes.

Fri, 17 Jul 2009 20:20:06 +0100

Rachael’s double vision has got worse. Previously she had it looking down, up and her pupil was dilated. Since the episodes last week with her vision going fuzzy, she now has double vision looking left and her pupil is fully dilated, you can hardly tell the colour of her eye.
We called the oncology department, as they had asked us to, if her symptoms progressed. They called me back and they had arranged for an MRI and opthamology appointment. Dr Edgar and Dr Johnstone would meet us after the scan. This was all done at the Sick Kids, Edinburgh.
After the scan we met with Dr johnstone who assessed Rachael. He went and got Dr Edgar and we had a meeting. Dr Edgar went on to tell us that after a quick look at the scan, there doesn’t seem to be any tumour growth, she also warned us that it was a quick look. All the doctors and radiologists have a meeting on a Friday and Rachael’s case would be looked at next Friday once the consultant radiographer has had a better look.
The meeting continued and Dr Edgar went on to tell us that she was writing to Mr. Statham, Rachael’s neurosurgeon. This is to see if there is anything else he could do to remove the tumour. We told her about a girl we had been in touch with in London. Last Tuesday had a massive operation and the neurosurgeon successfully removed all her tumour. Obviously it is the same as Rachael’s. She also told us that she was looking in to a new drug that manages to switch of this type of tumour. She also told us that there was a new nurse that has started, she works between the Sick Kids hospital and The Western General, that if we had any problems we should contact her in the first instance. I kind of felt that we were getting the dump and basically, stop bothering us, hey that’s just me. They never yet told us what had caused Rachael’s double vision to get worse, they just put it down to one of those things and it could get better. We left the meeting I must admit i felt quite angry. At least she doesn’t get the headaches any more, which is a blessing.
We went to see another Opthamologist in the afternoon. He basically said the same as the other one we saw two weeks ago. Her eyes could improve but may not and could take up to a year.

Thu, 9 Jul 2009 20:56:55 +0100

A bit of a break through for Rachael, yes that’s her name, she finally allowed me to write her name.
Rachael has not been that great the last couple of days. She has been getting blurry vision, with what she describes as a zig zag line through her field of vision. It only lasts for about ten minutes, worrying non the less. She hasn’t had any problems for the last while.
Rachael was at the ophthalmic clinic last week. This was for a check on her vision. She was told that her vision wasn’t any worse, but no improvement. We had hoped that they could have done something for her double vision looking downward. This is a bit of a worry for the likes of coming down stairs. Unfortunately the consultant said there was nothing they could do for her. We also asked about glasses for her reading, as it’s fuzzy when she reads as one pupil doesn’t dilate. He told her to buy a cheep pair out of the supermarket. Not the answer we were looking for.

Sat, 4 Jul 2009 21:11:59 +0100

Happy 16th Birthday, Rachael.
Lots of Love. Mum, Dad and Vicki

Fri, 3 Jul 2009 17:47:54 +0100

Its been a busy week, my daughter went to London last Sunday, on the bus with her school and came back Wednesday night. She said she had a brilliant time. They went to the o2 arena, London eye, the lion king and the cinema. Fortunately when they went to the cinema. It was Johnny Depp’s film premier, so that was a real buzz for all the kids.
We had a phone call from Dr Strachan this week. He informed us that my daughters blood test had showed her steroid level was low. Therefore he called her GP and asked him to write a prescription for them. We have to return in October to have the blood test repeated. This will determine if she will have to keep taking them. According to her GP, who she saw today, it looks like it’ll be a long term thing.
She is going to start the steroids and contraceptive pill tomorrow. Looks like it will be a life thing, she is not to bothered about it, more of an inconvenience I think. She was happy that the steroids are hydrocortisone and that it is a small dose, these wont give her any side effects.

Thu, 25 Jun 2009 21:24:33 +0100

We went to an appointment at the metabolic unit this afternoon. My daughter had a blood test about three weeks ago. Basically she had to lie in a bed and they took blood every 15 minutes, it was a hard test for her to go through. The nurses kept this warming blanket on her arm where the cannula was, this was to stop the blood clotting. At the end of it she felt faint and sick. I don’t really understand why it had to be done this way, hey I’m no doctor.
Dr. Strachan today told us that her growth hormone levels were normal and would not need any tablets for that. That was good news as we were told by the oncology doctors she was not to be given any, this would make the tumour grow. Unfortunately her estrogen levels are low so she will have to go on the contraceptive pill. I suppose this will be a good thing as Dr. Strachan explained that you need estrogen to keep your bones strong. As a father having his 15 year old on the pill, well I suppose its for the best.
My daughter had recently finished a course of steroids, so the doctor wanted a blood test, to check her level. There were tears, she does not mind getting the blood taken, its the jag in the bum in between the blood taking she hates. Basically they take blood, jag in the bum, go away for half an hour then they take more blood. She tells me the jag is really sore. We made her laugh and she was fine. I offered to get the jag for her, ha ha.

Wed, 17 Jun 2009 21:12:15 +0100

Were just back from the meeting with the doctors at the hospital. The meeting wasn't until 6p.m. tonight. All of the people involved were meeting at 5 and then us at 6. The doctor we were meeting with, Dr Edgar is going away on a course tomorrow so she waited to see us, so we didn't have to wait until she came back next week, pretty good of her I thought.
Basically my daughter has to wait another 3 months for another MRI scan. The doctors are unsure if the growth on the last scan is actual tumour growth or swelling from the radiotherapy. If it is tumour growth then the options will be chemotherapy and possible surgery. She still has double vision looking down, no headaches and her pupil still does not react. If her symptoms get worse we have to contact them. The doctor went on to tell us that her vision might never improve, she has made an appointment with the ophthalmic consultant to see if she can get some kind of glasses to help her read. As my daughter says its fuzzy when she reads. Dr Edgar also went on to tell us that the radiotherapy had fried her pituarity gland and she would have to be on hormone replacement therapy the rest of her life. Not a big deal really, not after she has been through.
The meeting was held at ward 4 at the sick kids Hospital. We had never been there before. Every kid in that ward was on chemotherapy, some of them must have only been 2 or 3, heartbreaking. Perhaps it was a tactical move by the doctor, just to let us see this sort of thing, after all were used to seeing the geriatrics at the Western general hospital, ha ha.
My daughter is now getting support from the hospital, she is going karting on Monday night with a bunch of other girls who have had some type of serious illness.

Wed, 3 Jun 2009 20:32:47 +0100

Went to the Western General Hospital in the morning for my daughters MRI scan. This scan would determine if her tumour had stopped growing after the radiotherapy. The scan went fine, my daughter goes in herself, no problem. I suppose she has had that many, it doesn't bother her any more.
We went for some lunch, then a look around the shops.
Her appointment wasn't until 2.30 in the afternoon, with the oncology doctors.
We arrived at Dr Edgars office at the Sick Kids Edinburgh prompt my wife daughter and I were all pretty quiet. We went in and Dr Edgar went on to tell us that she had received the scan results from the morning. The scan showed that part of the tumour had stopped growing and actually shrunk. Unfortunately another part of the tumour had grown by about 6mm. At this point my daughter was in floods of tears, just not the news we were looking for. The meeting lasted about an hour, there was lots of discussions, which I wont bore you with.
We have to return on the 17th of this month. Basically there is going to be a meeting with the radiographers, neurosurgeons, neurologists and oncology doctors to see what the next step is. They will come up with an answer and let us know on the 17th.
We all had a really tearful night.

Thu, 21 May 2009 19:21:50 +0100

My daughter is doing well, hasn’t had a headache for a while. She still has the double vision. She is still taking the steroids.

We received a letter today about the MRI scan. This is her first scan after finishing her radiotherapy. This is a BIGGY, this scan is to confirm whether the radiotherapy worked and stopped the tumour from growing. She also has an appointment in the afternoon with Dr Edgar at the sick kids. As we were going to the hospital we popped into see Dr Peoples at the cancer centre. We wanted to ask her about the scan and if we would have to wait another week for the results. She explained that she would not manage to be there in the afternoon, at the sick kids. She had spoken to the consultant radiographer, he would look at her scans and contact Dr Edgar with the results for our appointment in the afternoon. According to Dr Peoples, this consultant had examined all her scans and had remembered her case well.
She had an appointment today at the metabolic unit (Endocrine), with Dr Strachan. This is to check her hormones. The doctor wanted a major blood test. He explained that it would take about three hours and would take blood every fifteen minutes, this is to check her growth and hormone levels. She will now have continuous appointments within this department to ensure her hormone levels are in working order.

Tue, 12 May 2009 20:17:42 +0100

A bit of an improvement for my daughter, I wish I could write her name. Unfortunately she just wont allow it. It took me all my time to convince her to let me publish this site. She gave me strict instructions that her name was not to be written or any recognisable pictures of her. She is still really embarrassed about having this tumour. To be honest I don’t know why, the only thing we can put it down to is this age thing she has in her mind. That this is an older persons thing. We received an email from a lovely girl in Canada, she has a similar tumour and been through surgery and is currently undergoing radiotherapy. When I showed my daughter the email, the first thing she said was, “how old is she”.
Anyway, all her symptoms seem to have subsided. She is still on steroids but a reduced dose. She still has a dodgy tummy but seems to get by with the aid of a hot water bottle. Her double vision is only when she looks down now, the headaches are only now and again, she is still quite tired and the sick feeling in the morning has gone. Her pupil in her right eye still doesn't react, it stays the same size all the time, this is nothing new, it’s been like that since the surgery. The ophthalmic department told us that it could recover, but may not. Seemingly it can take months for nerves to heal.
The big news this week is that we have hair growth, yup, her hair has started to grow back. She doesn't seem that excited about it, perhaps once it’s a bit more prominent and thicker.
It is my eldest daughters birthday today, we stayed home and had a family meal, she didn’t want to go out or anything.
Happy Birthday.