Sunday 28th December

DISNEYLAND WAS FAB!!!!! After a quiet few days at home, and me going to work for 2 of them, we set off to Disneyland Paris for Sarahs 'Starlight Childrens Charity' wish. The train was at 9.13am from Ashford International in Kent, and after a nights stop at my brothers in Meopham, we got up early to check in by 8am. Much excitement, and a tricky climb on to the train up 3 steps over a huge gap later, we were on our way.We arrived at 12.13pm, exactly to time, and dropped our bags off at the Disney Express luggage drop (they would take our bags to our hotel for us, so we could go straight into the park). We got a disabled pass from City Hall which meant we could jump the majority of the queues and I have to say it saved us hours - IT WAS PACKED!!!! We walked up main street and the sight that greeted us would have brought a lump to the throat of the most hardened of people - a giant Xmas tree was in the middle of the square complete with presents under it, and SNOW!!! It was even snowing when we walked along the road (piped in, I know, as there wasn't a cloud in the sky, but lovely all the same!!)The castle at the end was covered in twinkling lights, and I have to say I gulped back a tear or two for a moment - so lovely to be on holiday again after the year from hell, and at this magical time of year, it was extra special.
All the months of worry melted away for 3 wonderful days, and although it was almost as cold as Santa's home at the north pole, we had a great time. Christmas Eve dinner was booked up for us at Mickey's Christmas Cruise Dinner, and we saw all the characters whilst we ate. Christmas morning breakfast was a character breakfast, so autograph books were at the ready. We had lunch at Planet Hollywood, and dinner at Annette's Diner, with waitresses on roller skates. Katie and I went on the scary rides - Rock'n'Roller Coaster, Hollywood Tower of Terror, Space Mountain, Indiana Jones and the Temple of Doom - Dave and Sarah came on Buzz Lightyear, Big Thunder Mountain Railway, Aladdin's Flying Carpets, Snow White and the Seven Dwarfs, It's a Small World, Star Tours and Haunted Mansion. Straight to the front, and a few hairy moments getting Sarah on and off the rides - a few tantrums, and a few giggles, but it was great. Only thing spoiling it were the French!!! B"""dy French - so ignorant - see a wheelchair and stop in front of it - don't move, apologise, or get out of the way - queue for the loo - HA!!! Jump in and ignore everyone else waiting in line. By day three, I'd had enough quite frankly, and wanted to just ram the wheelchair into their ankles!!! Even the staff on the rides weren't happy in their work - wouldn't happen in America - fixed grins reign supreme over there, and nothing is too much trouble.In France, it seems, that Christmas spirit is wearing a bit thin!!
Anyway, we made the best of it, and even managed a swim on Xmas day in the hotel pool. The Fantillusion electric parade on Christmas night was a great way to end the day, and the journey home was fine, and speedy. We do feel a bit cheated out of a Christmas rest, and are still absolutely shattered, but Sarah had a good time, and as it was her wish, we must respect that!!! But next year we are staying home.
Physio went by the way side, and Sarahs foot and leg swelled quite badly on the way home, but she has been moving it a bit more since we got home and it has gone down. She is back to the 'I can't stand on it' mode again now though, and refuses to put any weight on it, even when I nag.She has promised me she will try tomorrow - fear is still in the equation, although she refuses to admit it. Lets hope Piia, our local physio, can work her magic, or 2009 will be as long as 2008 has been, but for different reasons!!!

Wednesday 17th December

I've been a bit slow on updating this blog just lately but I suppose that is probably because I no longer spend all day sitting in a hospital trying to pass the time of day!!
Well, following last weeks blog its been full on - left UCH last Monday evening and by 9am Tuesday we were in Stanmore being assessed for hydrotherapy and physio. No peasce for the wicked! They were really busy and we nearly didn't see anyone at all, but eventually after complaining we had got up so early to get there, we saw Sarah, a student physio on her last week of her placement. She gave the nod that Sarah was a suitable candidate for hydro, and we were sent home until the following day.
Wednesday was a later start and we were booked in for hydro at 11.30 and land physio at 2pm.
Hydro was wonderful - Sarah the fish returned to our lives and the constant grin on her face was a pleasure to see.Apart from when Sarah(physio) said she was going to time Sarah running round the pool - Sarah looked horrified and said 'Run?! Me?!'.Anyway, she did run, albeit slowly and it wasn't as bad as she thought!!
Land physio was less successful - she still has trouble getting her heel on the floor and basically that is what is stopping her walking.Parallel bars, scales to measure weight bearing, swiss balls and wobble boards have all been used over the last 7 days and today we had a bit of progress at last. The last week, after Amy the land physio had nagged her senseless, Sarah started to do proper exercises EVERY night. She even called me upstairs if I forgot.This has helped immensely. On Friday, Sarah managed to get 24.5 kilos of weight through her foot with Amy holding her knee - today, without being held, she got herself upright, not leaning back as normal, and 29 kilos was acheived - 50% of her body weight for ooh, about 3 seconds!! Not much, I hear you say, but in Sarahs world that is HUGE. The scales didn't wobble either, it wasn't a bounced 29 kilos, but a constant pressure, and I am soooo pleased!!Yesterday I asked her to walk on my hand and I could hardly feel any pressure. Today she did the same and it was firm pressure pushing my fingers into the ground.Go Girl!!! 2 more days of this to go, and I only hope she continues. She wants to go swimming properly at home now, and today she did widths of proper swimming strokes - including butterfly, and could still do them all - I thought she would have trouble but it seems she is fine. Only thing she can't do is walk up the ladder of the pool to climb out!!We'll have to enlist the help of the disabled hoist at the local pool for the time being!!
On the social front, she sang in a Christmas carol concert last Tuesday evening with her school which was lovely, and had a friend sleep over Friday night. Saturday evening she went out for pizza with the same friend and Sunday she spent the day with another friend putting up her Christmas decorations while dave and I watched Katie play indoor hockey all day.Yesterday was the Stanmore Xmas party with magic Dave, and last Friday was the UCH Xmas party in town.This afternoon we had a flying visit to Trafalgar School to see her old teachers to let them know how she has been getting on.Tomorrow she is going to the pantomime with the guides, and Tuesday the Xmas festivities begin with a trip to Uncle Bobs for the night en route to Ashford International Station to catch the train to Disneyland Paris - I CAN'T WAIT!!!!I'm more excited than Sarah!!!

Monday 8th December 2008

Last week we went back to UCH for post-chemo tests, and took Sarahs bad cold with her!! Dave gave Sarah a cough which developed into a full blown cold and Wednesday morning she woke up hardly able to breathe because of a sore throat! At least we were going into hospital, so the doctors could have a look at her! By the time we eventually arrived at UCH after a terrible journey in bad traffic in an ambulance, Sarah was feeling lousy - the thought of having a canular, mixed with a bit of travel sickness from the bad driving of the ambulance driver and her cold didn't help!!On arrival, I enlisted the help of Jessie to be with Sarah while she had the canular put in, but after a few discussions, it was decided it would be fine to do the GFR Kidney test through her Hickmann Line and the chest scan didn't need any dye anyway!! As soon as she knew she didn't need any needles, she felt OK, and happily went to the playroom until the first test! Thursday, we were back for an Xray of her leg, and blood tests and in the afternoon there was a great Xmas party in the playroom laid on by Credit Suisse. The magician they had was a member of staff from the bank and he was amazing - I told him he should turn professional - I am still reliving his tricks, and the card trick where he cut open a kiwi fruit to reveal a card that sarah had signed earlier is still puzzling me!!
Came back in to UCH yet again last night to have Sarah's Hickmann Line removed at last - 7 months attached to her chest and we couldn't wait to get rid of it!! We didn't have any trouble with it compared to some but it is time to go all the same! Sarah was last on the list, so we were all ready for a long afternoon of nil by mouth and rumbling tummy, but at 1.30pm she was taken down. By 2pm she was awake and on her way back to the ward, and starving - even a general anaesthetic doesn't come between Sarah and her stomach! She has drunk, wee'd and eaten so we're good to go - just waiting for Dave to arrive to take us home, and our stays at UCH are over - just day care in future which we can handle. Got the news from the doctor last night that her chest scan is clear - so all good. Bloods are on the up, which is why she is feeling well, and the physio Julie is so pleased she is now making an effort with her exercises, and she is seeing some progress! Roll on Stanmore tomorrow and hopefully the swimming will give her strength and she will be walking by Xmas!

Thursday 27th November 2008 - the end, and the beginning......

Well it's official - CHEMO IS OVER!!!!!! Sarah had her final dose of the hard stuff on Monday, and her levels cleared and we were sent home. She was quite well this week, with just a bit of feeling sick, but tablets kept it at bay. She had a little party arranged for her and her friend McKenna who was also finishing chemo this week, and we all had loads of cakes and sweets and fizzy drinks. Sarah was given a HUGE Minnie Mouse as a present - not quite sure where she is going to live, but Sarah loves her, so I suppose she'll have to live somewhere!! Sarah is due back to UCH next week for her post-chemo tests Wednesday and Thursday and her line is coming out on 8th. Stanmore have booked her in on 9th - 12th for intense physio and hydrotherapy, and possibly the following week too, so hospital is still in our lives for a while longer.Lets hope they can get her on her feet.
We will miss all the staff at UCH - the never ending line of nurses have all been fab without exception. They have so much time and patience for all of the families struggling to come to terms with what a horrid and frightening disease their precious children have.No one who hasn't experienced cancer in its many forms can quite grasp the enormity of what it does to everyones lives. It rips your heart out and tests your strength, relationships and emotions to their limits. Mothers, fathers, siblings, grandparents, aunties, uncles, cousins, friends, teachers - the list is endless - everyone who knows the child with cancer is affected and is willing the child to recover with all their might. The nurses are there through it all, mopping up the tears and encouraging everyone to be strong. We will be forever grateful to the whole team on T11 north, right down to the poor food lady who was ceremoniously sent away every day after being told the food was horrible and Sarah didn't want to eat it!! The surgeon at Stanmore is our hero for removing the tumour - Mr Pollock was there at the start to deliver the diagnosis in a compassionate way to Sarah so she understood, was there at the operation to remove it in its entirety, and fit the artificial bone(beautiful neat stitches too - very impressive!!)and was there at the end to check her progress and make sure it was all working properly once the brace was removed.I will remember him forever as one of the most clever and wonderful men I have ever had the pleasure of meeting. The team of doctors and consultants under the guidance of Dr Maria Michelagnoli have been wonderful too. Dr Shankar loved Sarahs lovely smile and always had her interests at heart, would never force chemo on her when her body wasn't ready for it, and we thank him.Paulette always kept us stocked up with tissues and sickbowls,the most important job in the world!!! Jessie, the play specialist was amazing - Sarah loved her, and she always had time for all the children on the ward. It seemed like an easy job, sitting playing games all day and painting, but oh no, that is just on the surface - she watches, listens and understands - she calms, she encourages, and she sympathises. She gets these children through the worst time of their young lives with fun and games and Sarah will never forget her.Rachel, the school teacher has been great - she has praised Sarah for her attendance at school all the way through her treatment, has helped her with her homework, and helped her make the transition from junior school to secondary school. Sarah never missed a session at UCH Hospital school, even when she was poorly, and that is because of Rachel.Distraction technique sarah called it, but it wouldn't have worked if Rachel was a dragon - she wasn't and we will never forget her. The specialist nurses Vicky and Bryony were also a lifeline for us - Bryony was in the room when Sarah was diagnosed in April, they were always in the room at clinic and knew what was going on with Sarah, always came to speak to us on the ward, and listened to all my many days of crying my eyes out in desperation about what the future held for Sarah. They didn't patronise or judge, just listened and told us acurate information about what was happening.Bryony called me on the day of Sarah's operation to check everything was OK and our chat kept me going while she was in intensive care. Every child and family is different, so their knowledge of all things to do with cancer is amazing!!
And finally Julie, the most wonderful physio in the world, and the ONLY person to make Sarah laugh during physio!! We thank her for all her hard work to give Sarah the confidence to try - she didn't have that before Julie came along, and she has set her on the road to recovery and calmed me down in my moments of mass panic when I thought she would never walk again.I asked if she would move in with us for a while, but surprisingly she turned me down..........

As a foot note to Sarahs chemo story, we would like to thank all of you who read this blog that started just to stop all of you texting me every 5 minutes for an update!!!! - you have all been so wonderfully supportive of our family over the last 7 months, and you have all helped us get through this absolutely terrible year with smiles on our faces. Sarahs friends' acceptance of her appearance, and her continued inclusion in their everyday lives at parties and sleepovers, have helped her feel as normal as it was possible to feel in the circumstances.Her teachers at Trafalgar and Teddington have been great too, and she still loved coming to school on bad days.Our family - what can we say - we know you were suffering along with us, but you put on a brave face to give us so much support - you listened while we cried, ranted and raved, and laughed - thank God for the laughter - we might have gone mad. You brought presents, flowers and offers of help. We thank you from the bottom of our hearts for helping us through this.
And lastly to Katie, the most wonderful big sister it is possible to have(apart from mine.......!) - she has shown maturity beyond her 17 years, and has not complained once about being neglected over the last 7 months. She handled Sarahs illness better than most adults would, always asking questions about the disease, and what was happening next in the process. She continued with school in between, and it is to her credit that she hasn't let the emotional rollercoaster we are all on affect her studies. We wish her all the luck in the world with her future - if anyone deserves all the best that life can give, then she does. She has loved Sarah as much as it is possible to love someone and more, and even the sisterly arguments stopped!! I don't think I will mind if they return - as long as we have the girls together and healthy, all is well with the world.A Saturday night in front of the TV with a takeaway will never be taken for granted again.

This blog will continue but now will be about Sarahs physio and recovery, and not about being sick and ill. It will be a celebration of how fabulous she is, what she gets up to, and about how the bravest 11 year old on the planet gets back to normal. Watch this space!!

Monday 24th November 2008

Well this is it! The very last bag of bright yellow horrid chemo is attached to Sarah and is doing its thing. Got in last night, and Sarah was passed fit for chemo - we were honoured with a room for our last stay, but this morning we were told we might have to move to the bay tomorrow because of a chickenpox contact patient who might come in and needs to be quarantined!! Oh well, it was nice while it lasted. We might have the whole bay to ourselves until Wednesday anyway, so it won't be too bad!We have already dished out the choccie biscuits and thank you cards (Sarah couldn't wait until the end!!), so all we need now is the end of treatment party on Wednesday and we're out of here......... until next Wednesday and Thursday when we have to come back for post-chemo tests and the following Sunday for Sarahs line removal on 8th December! At least she won't be attached to a drip stand I suppose!!
Feels all a bit surreal today though - this has been our home for 7 months - we spend more time here than Cheyne Avenue, and it is going to be weird not to keep coming back every week. Sarah is pleased obviously, and hasn't stopped smiling. She might stop for 12 hours or so, whilst the chemo runs through, but I'm sure the smile will return by tomorrow lunchtime!!We will miss all the staff here - everyone has been so kind, and they are all so helpful and caring - I have been an emotional wreck for much of the last 7 months, and they never judge or say I'm being silly - always a shoulder to cry on and a box of tissues at the ready.We will also miss all Sarahs friends made along the way - Alana is back today for post chemo tests and a small party as she finished 2 weeks ago but didn't get a party. Humera is here at the moment but is going home with antibiotics as she has an infection! McKenna is back in Wednesday for her last chemo too, so we can celebrate together. Leanne is next door having the end of cycle 4, so we wish all these lovely brave girls all the luck in the world, and a speedy recovery!It has been nice to have so many girls on the ward - at the start there were alot of boys, but then the girls came along!
We saw the lovely Jack on Saturday night at his Recovery Party in Northfleet, and he is looking great, with only marginally more hair than Sarah - hers is growing through so fast!!Sarah has been missing her special little friend Rose since June when she moved to the Marsden, and is really looking forward to seeing her at the ward Xmas party.Even though she is only 6 (nearly 7 I think!!)Sarah really made friend there, and she misses her terribly!Rose finished her chemo last week, so we really do wish her and her brave family so much luck - they have had a really hard time, and have been fantastic throughout. Reading her blog has made me cry on more than one occasion!

Tuesday 18th November

Nearly there!! Last but one methotrexate done and dusted yesterday, and although Sarah felt horrible yesterday afternoon and evening, she woke up feeling much better - she spent most of last night seated on the bedpan, so hopefully that means she has wee'ed out loads of the stuff and she will clear tomorrow so we get an extra day at home this week..........or not!! Fingers crossed!She had a good session with the physio, who measured her range of movements today to make sure we shouldn't be worried that she can't walk yet (!?). She can bend her leg now to 86.5 degrees by herself, and can get to 95 degress if its done for her, so no worries there. LOADS better than before when she could only manage 45 degrees when measured!! Full extension so OK there too. Foot movement more troublesome - only half way there for external rotation (or something like that!!), where you twist your ankle outwards, although she has full flexion inwards,and only half way for achilles stretch too, which is stopping her putting her heel on the floor. Those are the ones she has to work on, so we are going for it now!!
On another positive note, she has been booked in to have her Hickmann Line removed on 8th December - WooHoo!!!!! I'll be glad to see the back of it, and so will she!
Post-chemo tests all being booked in at the moment too, so fingers crossed we can move on after Xmas and back to our own lives again!

Saturday 15th November

The old Sarah is well and truly back!! Both during and after chemo Sarah didn't stop talking and laughing, and generally being her old self. We were putting it down to all the e-numbers in the Fanta fruit twist she was drinking to get the phosphate tablets swallowed, but since going home, and not drinking any fruit twist, she still hasn't shut up!! ! ! She had a great 6 days at school, and a great couple of weekends too, on good form, and laughing all the way.
Tuesday afternoon we went to Stanmore on the leg lengthening machine to make sure the cog inside Sarahs metal prosthesis wasn't too sticky. We listened to it with a stethoscope and it sounded horrible!! Whirring round nicely though and she didn't feel a thing!! She was 2 minutes on the machine and it got lengthened 0.05mm.
Wednesday morning she had bloods taken by the community nurse - the line was a bit sticky but it gave blood so all fine(more on THAT later!!)Wednesday night we went to the theatre with 2 of Sarahs friends, and had a lovely, giggly night out!
Thursday afternoon, we went to the ENT Hospital for what we were expecting was a fitting for hearing aides. We saw a doctor specialising in hearing aides, and she ran Sarah through the same thorough tests she had pre cycle 6 2 weeks ago.Not only did they make her press a button when she heard the beeps, but put noises through her ears, and let the machine decide what she could and couldn't hear.She asked her loads of questions about how she felt she was hearing, and contrary to the previous doctors opinion, Sarah DOESN'T need hearing aides. In fact, she said there is absolutely nothing wrong with her hearing or ear function at all!! I can imagine the doctors at UCH will have something to say about this, as they have omitted 1 dose of Cisplatin because of the hearing tests she has had!! I'm not best pleased either!! Of course I would have liked Sarah to have had every drop of every drug they could throw at her, just to make doubley sure all those nasty cancer cells were blown away.
Anyway, to cut a long story short, she will be referred to a teacher of the deaf, to pinpoint why she isn't hearing - the doctor said it is psychological - brain overload, so she can only concentrate on one thing at a time. She has had so much to deal with, and so much information to take in, her brain is shutting some of it out.(mostly me nagging her about physio funnily enough........)She will undergo a hearing test for speech, and then they will decide how to overcome it.Sarah was very slightly disappointed as she had already chosen pink hearing aides with glittery bits on!!
Yesterday, we had the day from Hell. Nurse came at 8am to take blood again. The line refused to bleed and she could get nothing!! Decided to go for physio in Hounslow first and then take her to Ham clinic to see if it would shift it with all the moving around.Physio was OK, but she said there is very little they can do until she can get her heel on the floor and stop her foot from being inverted. We have another appointment in 3 weeks and have to get it down by then or we will just keep going round in circles.Went back to Ham and the nurse tried again for blood - nothing - so we were sent to West Middx Hospital for them to try. Sarah was dressed as a ladybird in aide of Children in Need and was by this time kicking up a fuss about missing all the fun at school.12.15pm, we got to West Middx and waited for a doctor to come and try to access the line. Eventually one came at 1.30pm, tried and failed. I pleaded with a sobbing Sarah by my side to let us go home until after school, or she would miss the whole day that she was so looking forward to.They agreed, and we went to school, arriving at 2.15pm, ready for last lesson (Music!!) only to finish at 3.15pm. I picked Sarah up again with her friend Georgia and we went back to West Middx. They injected an enzyme into her line to dissolve any gunk that was blocking the tubes, and we were sent home for 4 hours. At 8pm, we went back for them to try and get it out again. Got there at 8pm, and waited 2 hours 15minutes for a doctor to write up a chart, just so a nurse could withdraw the enzyme!! MADNESS!!!! At least Sarah had her friend Georgia there to keep her company and we had a TV in the TV room to watch Children in Need on.We went home and Georgia slept over, so although the evening was ruined, Sarah at least had a friend to stay!
Chinese for tea tonight in front of X Factor and back in to UCH tomorrow night again for the penultimate chemo, as long as she's passed fit. Everyone keep your fingers crossed please - we don't want any delays now!I really want mine and Sarah's life back.

Wednesday 5th November

We managed to get back in to UCH Monday lunchtime, after an 8am blood test revealed Sarahs counts had recovered enough to carry on. Went for a heart echo to make sure her heart had not been damaged by the chemo, and it was fine.So, chemo went on at around 5pm, and all has been fine since. Sarah has been on good form, no sickness, and physio is going well - still no weight down but the physio is working on it! She has now managed to get her leg bent to 90 degrees which is an enormous improvement, so now we only have 8 more days left in hospital, we really need to get her to stand. Chris Henry, the bone tumour nurse, got her to admit it was fear, not pain, that was stopping her progress, so if we can break through that, we might get her going!! The improvement in 3 weeks has been huge, so long may it continue. I'm still frustrated by her lack of weight bearing, but I have confidence that the physio will succeed where I can't. Stanmore might be an option for hydrotherapy and physio once her hickmann line has been removed, so I haven't given up by a long shot!
Looking forward now to 10 days at home, but dreading the likelihood of high temperatures and admissions to the local for blood transfusions.
Due back in UCH on 16th for the penultimate chemo, so if all goes to plan, everything will be finished by 27th November!!!! It can't come round soon enough!!

Wednesday 29th October 2008

Another frustrating day at UCH! Hospital transport turned up at 7.40am Monday morning, as I was pouring rice krispies into bowls! We never expect them early and usually they turn up around an hour late so it was a bit of a surprise! Anyway, Sarah wasn't feeling very well, but had a sickness tablet and off we went. Had a bit of breakfast on arrival, but she didn't feel hungry at all. Got in to bed, and had a nap - most unlike Sarah!! Went over to Dr Marias clinic for a 10.20 appointment, and got back to the ward to await an echo to check her heart was still OK after all the chemo - just routine. Physio came and Sarah did some good work playing football again with Humera, and even managed a bit of standing on her bad leg - the improvement in her in just 2 weeks is amazing, although there's still a VERY long way to go.Sarah then said she felt tired and got into bed and had another sleep - again, not like Sarah - she woke feeling really sick and promptly was sick all over her bed and clothes!! Too late for antisickness!! Then Dr Shankar came round at about 3.30 to tell us that her platelets were too low to start chemo - they had to be 75, aqnd they were 71 and dropping - aaaahhhhhh!!!!! Probably for the best - she was feeling ill, and didn't look like she wanted to have anything, let alone the dreaded red bag of medicine.The echo still had not happened so we are going back on Monday for an echo then to start the chemo - hopefully she will feel better by then - the last 3 nights have been touch and go with high temperatures, and it being too cold for me to want to take her to our local in the middle of the night!! I have taken the duvet off, turned her fan on and opened the windows, but both she and I have not had much sleep as I have been monitoring her temperature every 2 hours JUST IN CASE it rose too high - 38.3 was the highest, but I managed to get it down again by putting the fan on!! During the day she seems fine, and is eating OK - its just at bedtime. She does seem a bit better tonight and she's asked me not to wake her up tonight - I might just leave it until bedtime, then if that is OK, I should be able to sleep peacefully. Oh the joys of caring for a cancer patient - my nerves are frazzled, patience wearing thin, and emotions running a bit high, but I can see the end,even though the closer we get to it, the further it moves away.

Sunday 26th October 2008

Its a miracle!! Sarah cleared her methotrexate in 48 hours AGAIN!!!!! Managed to get home for X-Factor and have 2 lovely nights in our own bed! Today we had a lie in (and enjoyed the extra hour we got because the clocks went back!!) and then went to the cinema to see High School Musical 3. Had a lovely time with sarahs friend Georgia, and followed it with lunch in Burger King.
Going back in to UCH tomorrow morning in hospital transport (aaaahhhh!!!!) for an appointment with Dr maria, her consultant, then chemo at lunch time. Although, I hate to say it but she has a bit of a temperature tonight! I've put the fan on,opened the windows, and told her not to cover herself too much with the duvet - at least make it until morning, when we're going in to hospital anyway! UCH is way better than our local.............Fingers crossed!

Thursday 23rd October 2008

We went for a hearing test yesterday morning, and it turns out the poisonous chemo has damaged Sarah's inner ear and she might benefit from hearing aides!! She doesn't mind much, and I can't see her wearing them much, but we have made an appointment to have some fitted, and we'll see how much she can hear with them in!! Maybe she'll be able to listen to me then, instead of ignoring me........
Got let out for the afternoon yesterday as nothing was happening until today, so we went on a jolly to Madame Tussauds with mum and dad. Had a really great time - as a wheelchair user, Sarah and I got in free!!! The staff were all really helpful, and took us up all the different levels in a special lift, and gave us lots of help in finding where things were - mum lost her camera, and they even found that too!!Very impressed and the waxworks were good too!
This morning we had physio - and its official - PHYSIO CAN BE FUN!!!! Julie, Sarahs new physio, is great - she had Sarah, Leanne and Humera playing football on the ward!! And doing a bit of aerobics with their bad legs - great fun, and Sarah even said she wants to do more physio - completely unknown comment from a girl who HATES physio with a vengeance!!
After play, chemo went up, Sarah had a footmassage from the aromatherapy lady, and then she's gone to school - she feels a bit sick as usual, but hopefully, the distraction of school, and the other kids on the ward will stop it being too bad. She's still managing to eat sausage rolls for lunch, so it can't be all that bad..........
We also had a dermatologist look at her skin this morning, to see if they can sort out her itchy spots on her arms - they are going to prescribe some cream, and some oil for the bath to soften her dry skin too. It should all get better once treatment has finished - WHICH ISN'T LONG NOW!!!

Sunday 19th October 2008

Well, the news got better after my BIG whinge about going in for the weekend!! After a sleepy 3 days in hospital for Sarah with nothing to do - no Jessie in the playroom, Rachel in school for just 1 day, and Sarah sleeping for England, Sarah cleared her Methotrexate in 48 hours for the first time ever!!! We were all prepared for a pizza and X-factor when the nurse said she had cleared and we could go home! I had never felt so pleased in my life - I found it tough this week - the previous weeks traumas caught up with me, and the boredom made it ten times worse. I miss Dave every week, but I missed him more this week than ever, and I really wanted to go home. This has been the longest 6 months of our lives, and we are so glad its coming to an end at last. All we can hope is that this will be behind us after November, and there will be no nasty surprises in store. Xmas will be the best ever, and we will never take time at home together for granted again! We go back in Tuesday for another dose of chemo, but it all looks promising for the hockey weekend.

Friday 17th October 2008

Doctors phoned at 5.15pm Wednesday to ask us to come in Wednesday night for chemo Thursday, despite a staff nurse telling us we wouldn't be going in because there was no room. This caused us no end of problems, as Katie was home from school for hockey training, and we had to get her back, Dave's mum was being kept in hospital overnight because she was feeling unwell after having her catheter removed, and Dave had loads of things to do!! We managed to get Laura to take Dave's mums things to the hospital, and take Katie back to school, and Dave dropped us off in UCH at 8pm.It was full up, no spare beds, and all girls!!! The doctors are going to gain us 24 hours a week, so we can still go to Cannock. We go home Sunday this week, then back Tuesday until Saturday, then back Monday for 48 hours, as long as Sarah stays well.
Chemo was OK yesterday, and Sarah felt fine until around 6 o'clock - she then developed a tummy ache and felt really sick. At about 8pm she was sick and that seemed to make her feel better, and after a few early trips to the loo, she slept quite well. She seems really tired today, and she's had a reflexolgy foot and hand massage, and is sleeping soundly as I type this. I think all the coughing/physio/chemo has caught up with her, so I hope she stays asleep as long as she needs to. Not really looking forward to the weekend in here, but hey - X-Factors on, and we can get a pizza and coke and have a girly night in front of the telly!!!

Tuesday 14th October 2008

Aaaaaaaaaahhhhhhhhh!!!!!!!! Doctors are stupid - hospitals are rubbish!!!! Spoke to the doctor at UCH on Saturday and explained that Sarah was coughing really badly, and asked the question - 'Would chemo go ahead?' Yes was the reply, so we headed off to UCH Sunday afternoon in a rickety old ambulance (as Dave was in Somerset with Katie on a hockey jolly). Arrived around 5.30pm, and Sarah was checked in, picked her bed, had bloods done and waited for the doctor. Doc checked her over and tutted a bit, mmmmm'd a bit, and then sent her for a chest x-ray. Back in about 10 minutes, all clear. Mmmmm'd a bit more and rang the consultant, who decided that 3 days antibiotics wasn't enough, and as they couldn't give methotrexate with antibiotics, we were to go home and keep taking the tablets. I then had to phone Dave, (who had just arrived home from Somerset), to come and pick us up!!! (Sarah was as pleased as punch I might add, but I was not and neither was Dave!!!) Came home still coughing, and continued on the tablets. Today, the hospital phoned to say we were to stop the tablets, and come on in tonight for chemo tomorrow - 1 hour later, the doctor phoned to say that they didn't have a bed!!!! So, we have to go in tomorrow, for chemo Thursday, and we won't be home until Sunday. This throws all our plans for 2 weeks time, as we were going to Cannock to watch Katie play in the England Hockey Futures Cup and we've booked the hotel!!!! Tomorrow they are phoning back to see if we can sort something out - I have asked to be delayed until Sunday - then at least we can be out on the Thursday night in 2 weeks time, and can only miss 1 game on Thursday. Aaaaaaahhhhhhhh!!!!! They seem to forget you have other children when they do these things - everything stops AND I HATE IT!!!!!

Saturday 11th October 2008

Our 10 days at home started uneventfully - came home Wednesday night, Sarah went to school Thursday and Friday, and guides Thursday night. We went to see her friends at swimming on Friday night and took her beloved trophies back ready for the next championships at the end of October.We had friends round for lunch on Sunday, and generally had a good weekend. She went to school Monday and Tuesday and then the trouble began. Firstly Katie came home with a cold at the weekend, then I noticed Sarah coughing and sniffing. By Tuesday night the cough had got quite bad, and she was kept home from school Wednesday and Thursday. Wednesday evening, her temperature was hovering near to 38 degrees where hospital admission is inevitable. I decided to take her in to be checked over by a doctor at our local hospital. The doctor said she was fine, it was viral and there was little they could do. I had to monitor her temperature at midnight and 4am, and both were fine. Thursday afternoon, the doctor from West Mid phoned and said that they had decided to put Sarah on antibiotics as a precaution.Dave collected the prescription and we got started straight away. Unfortunately they didn't do much!! Friday morning Shirley the community nurse came and took bloods and I went to work. By 2pm, the nurse had phoned to say Sarahs levels were really low - her Hb level was only 6.8 (red blood cells) so she would need a blood transfusion. I left work straight away and took her in to West Mid again. They had to cross match her blood and that took 2 hours instead of the 45 mins they originally said!! It was decided she needed 3 units of blood and each unit would be given over 2 hours - Sarah soon realised we wouldn't be out of there until around 11pm, and she was adamant she wasn't staying in!! BUT - after the first unit, Sarahs temperature spiked to 37.9. The doctors weren't happy to give another unit until the temperature had gone down, so she had calpol and we waited. 10.30pm and the temperature was more normal so they continued - but this meant staying in over night which didn't impress Sarah one bit!! She was woken every hour to have her temperature taken and her blood pressure done in case there was any reaction to the foreign blood! After a rough night we escaped around 9,30 this morning. She is still coughing and I didn't think they would do chemo at UCH with her in that state but they say they will, so transport is still booked and the bag will be packed in the morning. Fingers crossed her neutrophils will get higher quickly and she can fight off this nasty cough virus - she's knackered, and so am I. Poor Dave has had to drive to Somerset tonight to take Katie down to Millfield for a hockey trial, so I won't see him for several days - this is taking its toll on him too, and we are both feeling the strain a bit at the moment. Can't wait until the end of November.........

Tuesday 30th September

What a successful week we've had so far!! We have had a bit of a Eureka moment with Sarah's physio and guess what?? SHE'S WALKING!!!!!! I went for a cup of coffee yesterday morning in the parents room, and when I came out, she was walking past me in the corridor, heel down, proper steps and everything!! Admittedly with crutches, but still a HUGE improvement. It appears that Claire bent her ankle back so it was past 90 degrees, and although it hurt, she didn't cry and it seemed to release something! She was then able to get her ankle down on the floor so could also do real steps. The enthusiasm continued as she walked to play and sat on a proper chair, NOT her wheelchair. She has been using the toilet all day rather than using a bedpan, and has also walked to school, then play again, then back to bed again! She even offered to walk down to the hospital shop yesterday and the only thing that stopped her was that chemo was imminent! The threat that she won't be able to go on any rides at Disneyland Paris seems to have woken up her sleeping muscles, and she can even get her ankle off the bed and bend her knee to 80 degrees whilst sitting on a chair. Amazing progress in just 2 days.
Chemo wise, its OK, with just the bright red Doxorubicine going in, and no sickness. Only 20 more nights in hospital at the last count and the end is in sight................

Sunday 28th September

Bit of gap between postings - sorry about that!!
Last week started quite scarily - Sarah and I went up to hospital by hospital transport because Dave had gone on a hockey jolly with Katie to Somerset. Sarah had been complaining of a bad back all morning but Calpol seemed to do the trick.
Following a journey to UCH lying across the back seat of the hospital car, Sarah arrived in tears, saying her back was really painful. By the time we got to the ward, she was screaming in agony. She couldn't stand, sit or lie down without pain and she was shaking by now. She said the pain went down her legs and by this time both she and I were a bit worried.An hour had passed and the screaming hadn't stopped. The doctors gave her codeine tablets and they didn't seem to work very quickly, but after a dose of calpol, everything seemed to calm down and she stopped crying.Before all this madness we are going through, pain like this would have been dismissed with a big dose of calpol, and a comment of 'it will be OK in a little while.' Now, every pain, twinge, headache etc. is greeted with panic. Anyway, about 4 different doctors had a look at her back, and between them and the physio, it was decided it was more than likely a trapped nerve or back pain because she is walking with a tilted pelvis because of her leg. The physios tried to use that as a reason for her to put her weight down, but I'm not sure she understood the implications!
Having said that, physio was quite good this week. Monday was particularly good as she hadn't had any chemo when she did it, so was feeling quite strong. Still no weight on her foot but she did loads of walking about with crutches, and some good bending exercises. It slowed a bit towards the end of the week as she tired, but still, anything is better than nothing.Chemo was OK - felt a bit sick Monday during and just after chemo, but got gradually better as the week progressed. Managed to get to school with Rachel, and even managed to almost write a whole history essay for her homework from Teddington.
Tuesday we went for an X-ray on her leg in preparation for a visit from her surgeon Mr Pollock and Thursday, Sarah and Jack went in the hospital party bus for hearing tests! Sarah had a bad test last time around so Cisplatin was omitted from her treatment last cycle. They were re-testing in case it was a blip, and they might be able to add Cisplatin back in this week. However, they still said it was a poor test - better than last time but still not good.The doctors were going to discuss Friday and make an appointment with Maria for Monday after Sarahs heart echo test (all routine and something she has each cycle) but the opinion is probably going to be that they won't give Sarah Cisplatin again.
The X-ray was OK though, and Mr Pollock dropped by Thursday lunchtime. He had a good look at her leg, and had a bit of a bend and stretch. He said it was looking good, but that she had to get going on it. The longer she leaves it, the harder it will be. She will next see him in December, so the hope is she will walk in to see him, and he will agree to all the rides at Disneyland Paris!! She and I had a calm discussion about that last night, and I think she is finally realising she has to do something. I told her she only has 6 more times in hospital in which to work with Claire, her physio, and that equates to 3 weeks in actual days - this seemed to ring alarm bells as 3 weeks isn't long! She got up to the loo, and immediately tried to put her heel down and stretch her achilles tendon. I think a light might have been turned on in her head at last!!
Thursday also saw us celebrating with sarahs friend Jack as he completed his chemo. He had Osteosarcoma in his pelvis and has been at UCH all the time Sarah has been there, and they became good friends - they were like an old married couple always bickering and moaning at each other, but I think they enjoyed each others company really!! His mum Tiffany always made sarah laugh, and they kept each other going through lots of tough times. Its lovely to see kids finishing their treatment - they go through so much, and the relief and smiles the end of treatment brings give everyone else something to work towards.
The weekend was OK here too - sarah got a bit of a temperature on Thursday night and I did ring the hospital at 2am to see what they wanted me to do as it was 37.8 degrees!! They said wait an hour and check again - I stripped off the duvet and opened the window, then set my alarm for an hour later! By then it had dropped to 36.9, so panic over. She was sleepy Friday, and rested all day.
She also managed to go to her friends sleep over birthday party this weekend, and she had great fun making jewellery and watching scary Jaws films. Back in hospital tonight until Wednesday, so I'll report back on progress during the week!

Saturday 20th September

Well we managed to get home Thursday night after a bit of a battle with the blood tests - we were all packed and waiting for the results of Sarahs 12 noon blood test at 5.30pm, which was the time they come through - Wednesdays was 0.25, and we only had to clear another 0.05 to be allowed home, so nurses were on standby to disconnect the dreaded fluid, and send us on our way.5.30 came and all blood results were on the computer EXCEPT the Methotrexate levels!! Nurse Jenny called the biochemists and asked where they were, and they said the bloods were received at 4.15pm and the Methotrexate levels were done at 4pm, so the bloods were late, so no levels measured. They refused to retest for the levels without the OK from a consultant! Jenny called the consultant, who called the biochemist to authorise the re-test, then we had to wait while they did it - UNBELIEVABLE!!! The doctors refused to allow us to leave or be disconnected from fluids INCASE Sarah hadn't cleared - she had probably cleared about 2 hours after yesterdays blood was taken as it was so close, but it was more than their job was worth........so we played endless games of Uno while we were waiting. Eventually, Sarah was given the all clear and we made our escape! Friday she managed to go to school, although she was a bit tired - it always does her good to get away from me, and into the company of friends rather than doctors, physios and nurses.
Today Sarah had a day of rest while Katie and I went to hockey ,with a chinese takeaway for tea - not sure if its the steroids or just boredom, but she hasn't stopped eating for weeks now - the sickness has been non-existant, and nothing fills her up - she has grown 4 cms since the end of April, and is looking tall and slim. Now she is up and walking a bit, everyone is commenting how tall she looks - the nurses only usually see her sitting or laying down!! She has only lost 3 kilos since the start of treatment, and I am really surprised she isn't the size of a house considering what she eats every day!
We are going back into hospital tomorrow by hospital transport so could arrive at any time knowing their track record for timings - we are supposed to be there by 6pm, but have to be ready for collection by 3.30pm!!! Dave has to take Katie to Somerset for 2 hockey matches, then back to school - quite glad I'm not going......

Tuesday 16th September

Update to another exciting few days in UCH!!! Got here Sunday evening, to find that 2 of the 4 TVs were not working by the beds, so glad we weren't late and managed to bag a bed with a TV that was working!! THANK GOODNESS!!! We also had a working internet point too which is even better news! 3 years old and the hospital is already in a state........good old NHS!
No unexplained sickness Sunday night and a quiet night. Monday, the physio came and had a chat with Sarah and told her the strict plan of action for the next 3 weeks we have here - she is going to get her foot down and knee bent by the end if it kills her I think!!! Chemo went up around 12 and as soon as the yellow fluid reached the line in her body, Sarah began to feel sick - not sure if it is genuinely the chemo, or the anticipation of what might be - she had had all her antisickness tablets and medicines, and she wasn't actually sick. Remarkably, once in school, she felt a little better, and still managed to eat a yorkie bar and a pasta bake for tea. Once the chemo came down, she was fine, and the fluids started their task of washing it all out again, which instantly makes Sarah feel better.The physio came to do a few exercises but she was a little tired after the chemo, so did a little bit on the chair. I went away and she achieved much more without me present.
Quite a good night except for the constant trips to the bedpan as usual........
This morning up early for Sarahs venture to the hospital gym. Had a good dose of McDonalds breakfast and pancakes, so she had loads of energy!! Off they went, again without me, as I'm sure she uses me as an excuse to stop - the 2 physios stood for no nonsense and wouldn't take no for an answer. She did loads of knee bends, squashed putty on the floor with her bad foot and walked along parallel bars(or hopped mostly, but she's trying!!)She stood for 5 minutes and played giant 'connect 4' and generally did really well.
This afternoon after school, she did yet more exercises, and was managing to bend the leg to about 50-60 degrees.This evening on the leg bending machine we got to 75 degrees, albeit by Sarah cheating a bit by twisting her bad ankle, but it still bent further than ever. More gym tomorrow,so have to persuade Sarah to get up by 9am!!
Sarah has become an expert at evaluating student doctors too - at the beginning of her treatment here, she was interviewed by some students and she had to give her opinion to the consultant of how she thought they did - she obviously did it well, as she was asked to do it again today - she told the consultant what they should have asked her, and how they should have behaved, and she didn't mince her words!!!
Methotrexate levels were 5.5 today and they need to reduce to less than 0.2, so probably another 2 days in here as usual, then home for the weekend and back Sunday night again - oh joy!! Still, another week crossed of the chart - 7 more to go...........

Thursday 11th September

Our lives have had an injection of something resembling normality this week, and its come as a bit of a shock!!!! Came home from UCH on Friday, a day earlier than we thought because of the omission of the nasty drug, and with Sarah still on a bit of a hyperactive trip!! I went to Teddington's hockey trials Saturday morning and then went to watch Katie play a couple of matches in the afternoon, which is my normal Saturday routine!!
Sunday , I took Sarah down to her hockey to see her friends, so she could show them all her scar (!!) and then shopping for school shoes, and Katie had more hockey trials, for South of England this time, followed by another drive back to school in Mill Hill at 8.30pm.
Monday and Tuesday, Sarah went to Thames Young Mariners with her new secondary school, for team building days - they built rafts, played team games and went kayaking and sailing. Sarah enjoyed herself by bossing everyone around telling them what to do! She even got a ride in a motor boat to cheer on the raft race from the water.
Wednesday, and for the rest of this week, she is at school properly, and having a great time! She has nice teachers all sympathetic to her plight and everyone is trying to accomodate her where they can - all her classes except maths are on the ground floor, so she doesn't have to be on her own.She is joining art club with her friend Georgia, so that will keep her out of mischief during lunchtime. She has access to the disabled loo, and she is managing to go to the loo by herself, which is a relief for everyone!
On the walking front, she is stubbornly refusing to push herself to do physio, and still won't put any weight on her foot. The physio came to our house yesterday and following Sarahs refusal to co-operate and her general stroppyness, she scuttled away mumbling something about usually only dealing with 5 year olds who do as they are told!! I think she might send someone else next time - she wasn't pushy enough to deal with Sarah and her hormones.........I only hope Claire at UCH has more luck or I can see us joining Rose at Stanmore as an inpatient, for intensive physio, and some REALLY hard work. I keep threatening, but its just not working and I feel totally useless.
On top of these goings on, I have been at work everyday since Tuesday, and the 7 o'clock alarm is getting irritating now!! We have to be out of the house by 8 o'clock to get Sarah to school on time, and then off to work until 5.30pm - I am totally knackered. Still, some time away from the stroppy one is doing us both good - I can then be more tolerant with her, and she is ever-so-slightly less stroppy after not seeing me all day! Oh the joys of getting back to normal - how did we all cope before becoming institutionalised?? Where did I get my energy from............??

Friday 5th September 2008

Not much to report this week, as chemo has been a doddle - we have come to the conclusion that the Cisplatin (the drug they have removed this week) is the one causing all the sickness, and Doxorubicin is fine - all she has are dark circles under her eyes, as the liquid is red, but that fades over a week or so.There has been no sickness, or loss of apetite, and if anything she is more chatty than usual and has been a real pest!! The nurses think she's funny, but it gets pretty wearing after a whole day listening to it!! I asked if they would sedate her but they wouldn't for some reason!!!
She's been up and walking, when we can persuade her not to be lazy, and uses more excuses to stay in her wheelchair than I could have imagined! She's been given goals by the physio, so fingers crossed she will do them at home.The brace came off Wednesday morning, and hasn't been on since, so progress is being made every day. Still not much weight on it, but she's up off her backside!!!
Last night, she was so hyper all day that she conked out just as Eastenders was starting at 7.30pm and I had to wake her up at 10am this morning!!
Temperature has been down all week, so the dreaded virus has been sent packing at long last. She has been to play this morning and is at school as I am writing this - only another couple of hours and we can go home for a week - yippee!!! Will take her shopping for new school shoes on Sunday, and then she hopefully will get to school next week to meet all her new class mates. I spoke to Dr Maria this morning about her hearing test, and she agrees with me that I would have noticed a change if her hearing has been affected as much as they say, so she is going to retest and think again in 4 weeks!!Our slight change in timetable now means that she will be in hospital for her friend Jack's last week in 2 weeks time, so she is pleased about that too - its not all bad!!

Wednesday 3rd September 2008

We spent Sunday night in West Middx Hospital, with Sarah's temperature being monitored every 4 hours - every time the Calpol wore off, it spiked again, but not so high, so they stopped the antibiotics Monday lunchtime. The blood cultures they took at UCH and West Middx were all negative so it looks as though she just picked up a virus.We spent one more night in West Middx and so I woke up on my birthday on a hospital camp bed!! No Bucks Fizz for me!!! We got to go home just before lunch as Sarah had not had Calpol for 18 hours and her temperature had stabilised. Sarah made a rapid recovery, and she made me take her and Katie to Pizza Hut for a birthday lunch!!
We got to spend last night in our own beds before being collected in hospital transport at 9.30am to come back to UCH for chemo.
First she had to have a hearing test - last time, she had a poor test so they repeated it - this time it was a terrible test!!! She has lost the ability to hear high pitched sounds, and also some low pitched sounds, although I am convinced it was so bad because she was half asleep-whilst she was doing the test her eyes were closed, and she was nodding off!! Because of the result of the tests, the doctors have taken Cisplatin (the worst drug) off this week, and are only doing Doxorubicin, which lasts 48 hours instead of 72.Cisplatin is the one that affects your hearing and they don't want to make it worse.They will re-test again before we do week 1 again in 4 weeks, and if it is just because she was sleepy and the test is better, they will add the last Cisplatin back in - if not, then they won't give it at all.They don't want her to need hearing aides!! It just adds to the worry for us - if its not one thing, its another!!
On the plus side, Sarahs favourite physio, Claire, came back from holiday, so Sarah got out of bed with no brace on, stood up for her on a walking frame and walked up to the end of the corridor AND BACK!!! Then, while I was out buying dinner, she got out of bed ON HER OWN and went to the loo, walking all the way on the frame - up to now, I have been having to hold her leg up off the floor while she sits - I think we've turned a corner!!She then went on the bending machine and quite comfortably got to 60 degrees. She's doing brilliantly, and has spent all day with no brace on - not just while lying down.

Week beginning 25th August

Well, what can I say - another eventful week in Sarahs treatment!!! Firstly, we went in to hospital on Monday after a lovely long weekend at home for bank holiday, and although I could get onto the internet on Monday night, by Tuesday, the server had gone down and we couldn't for the rest of the week, hence the delay in updating the blog!! It was like our right arms had been cut off - Sarah couldn't watch BBCiplayer after 9pm when the tellies went off - I couldn't check the dire state of my bank account whilst I was in hospital - only good thing was the Olympics had finished, so I wasn't missing anything!!!
On Tuesday, chemo went up, and all went fine, but then in the afternoon, Sarah started shivering and shaking and she spiked yet another temperature!! I think she's allergic to UCH!!! She recovered by Wednesday, and Georgia came to see her with her nan, and also Uncle Bob - she was in good spirits and was cheerful. However, by Wednesday late afternoon, the temperature had spiked again - the nurses took cultures and she was started on antibiotics straight away - the temperature didn't subside this time and she was more than 38.5 degrees for most of the night. By Friday, she was on 2 lots of antibiotics - one once a day, and one 3 times a day. We therefore had to go straight to our local hospital - West Middlesex - for the antibiotics to be administered.We stayed there over night Friday and Saturday and Sarah was really not very well. She was lethargic and sick, and not happy to be kept in hospital. Today, Sunday, we were allowed out between doses, so I could get my washing done, and Sarah could enjoy some time at home.We have just had Sunday roast, and then after giving Sarah a well needed bath, we are going back in for the night so she can have tonights 10pm dose, then one at 6am!!! Hopefully, as she is feeling a bit better, we can go ahead with the chemo due next week, probably Tuesday, or Wednesday. Lets hope next weeks story is not the same!!!

Wednesday/Thursday 20th/21st August 2008

Another boring day in hospital Wednesday - I hate it, and all that happens is blood tests at 12 o'clock, loads of tablets, and fluid that makes me go to the loo every hour!! My cousin Lucy did come and visit after morning playtime though, and she came down to the gym with me and mum, so I could do some physio. I had to lie on the bed and lift me knee up off the bed by myself using my hamstrings. I was feeling tired and sick so I didn't want to do it, but Claire the physio made me do 70 bends!!! I got better the more I did.
Wednesday night, the nurses took my temperature and under 1 arm it was 38.4, the other arm was 37.1, and under my tongue was 37.2. They waited an hour and did it again, and with one thermometer it was 38.8, and another was 37.2!!! they couldn't understand it! They couldn't decide if I had an infection or not because 38 degrees is the limit before you get antibiotics.They decided to leave it and keep an eye on me, but luckily I didn't need any more medicine.
Thursday was OK, I didn't feel too bad, and I went to play and made a picture frame, and decorated a cocktail glass with glass paint. I did some exercises at lunch time and can now bend my leg up on my own - not very far, but it comes off the bed!! After lunch the some Arsenal footballers came to the hospital, so we went to see them - we saw Arsene Wenger, Fabregas, and Almunia the goalie. I got their autographs too, and I got a signed photo for my uncle Mike who loves Arsenal!! Mum also got Roger Daltry's autograph for me - I don't know who he is but she did - she says he was a famous popstar - lead singer of the Who- never heard of them!!!She was excited though!
Also, we got to come home - my levels were low enough, and the surgeon who did my leg also said I can put weight on my leg now, not wear the brace in bed, and on Tuesday next week, I can get rid of the brace altogether!! Yippee!!

Tuesday 19th August 2008

What a night!! Sarah was really sick almost as soon as the Methotrexate went up, and it caught us by surprise a bit as she coped really well during her last cycle and felt fine all the way through - maybe her resistance has dropped a bit with the 5 week gap between treatments. She got the shivers, and complained about being freezing cold, although I was really hot! I managed to persuade her to have Nozinan, which is a good antisickness drug which knocks her out usually, and works wonders - she went straight to sleep, but was fitfull, and really not settled. Bethan, Sarahs favourite nurse, took her temperature and blood pressure around midnight, and her heart rate was high and her temperature was 38.4.
38 degrees and neutropenic (when you have no immune system to fight infection) is not good news, so they left it half an hour and took it again and it was still 38 degrees despite me removing 2 blankets, and her dressing gown!! They therefore started her on antibiotics straight away, no messing around! They also took blood samples and cultures to test for bugs growing - a bit scary as we have come this far without experiencing any of these dramas!!
However, although we had some stroppy trips onto the bedpan during the night, because she was tired and wobbly due to the drugs, she wasn't sick any more, and her temperature stablised.The blood they took in the night was also tested, and it turned out that she is no longer neutropenic, so all should be well. They continued the antibiotics today and will do until the blood cultures come back, probably tomorrow, but she's had a good day otherwise! Surprisingly, after all that, she had cheese and onion crisps for breakfast, followed by an orange club, and beans on toast for lunch - she followed that with 2 naan bread for tea, dipped in my chicken tikka sauce (not my idea I can tell you!!!) and an orange. She's been in the playroom twice today and had a nice visit from Auntie Janice and Uncle Mike. She got seen by the physio who gave her a fluffy boot to wear to keep her ankle straight, and she managed to get the bend on the leg machine up to 60 degrees(nasty Auntie Janice cranked it up high while she was playing on her Wii with Uncle Mike and she wasn't thinking about it!!) It didn't last for long once she noticed, but she was proud enough of herself to tell the physio when she came back on the ward later! Tomorrow she is going down to the gym - who knows what she will acheive down there!! Fingers crossed for a decent nights sleep at last.................

Monday 18th August 2008

Blood tests at our local hospital were fine for chemo to go ahead today, so we made the journey back to UCH yesterday evening. We requested our own room again because of the difficulty Sarah has going to the loo with her leg in a splint, but were told there were no rooms free and they were full. We therefore had to do the next best thing and chose the bed space with the largest square footage - we've been in all four beds now we are old hands, so we know bed 6 has the most room around the bed!! Last night was a bit traumatic, because not only was Sarah sooooo fed up and upset being back in hospital after a wonderful 17 days at home in her own bed with her daddy and big sister, but we were unfortunately next to a very sick little boy, who was hooked up to some noisy machine, which beeped loudly every half an hour (thats what it seemed like anyway!!) and every time it beeped, nurses came running! Sarah was hooked up to fluids at 6am, and was made to take a tablet, which is so big she has to have it cut into 4 pieces. Psychologically,Sarah always feels ill as soon as she is hooked up, even if its only fluids, so she spent all morning complaining of feeling sick. She still managed breakfast, and lunch of a cheese and ham toastie. Once chemo got hooked up, the sickness kicked in with a vengeance! The poor physio Claire comes to see her and every time she starts exercises, she starts to feel sick - Claire is taking it personally now!! However, Sarah managed to bend a little bit without her brace on which was a first. She was also put on this contraption which bends your leg for you when you are just lying down feeling crap!! She managed to get it up to 40 degrees before she complained. Hopefully when she is feeling a bit better we can get it a bit further.This afternoon she was sick, and this made her fall asleep, so hopefully she will start to feel better now the chemo has stopped.

Friday 15th August 2008

Another quiet few days, with not alot going on - Sarah has been well, no sickness, or temperature, and appetite good. Wednesday morning we went to Twickenham for coffee with my friend, then for a pizza at Zizzi with Katie serving us!! we managed to get the whole meal free from the manager which made it taste much better!
Thursday, Sarahs friend Sassie and her mum Tina came round for a chat and some lunch, and we spent an hour or two on the Wii, which was very funny!
Today (friday) the nurse came and took Sarahs blood, and her levels are a bit low, too low in fact to start chemo Monday unless they recover - we are going to West Middlesex Hospital in the morning for another blood test, and hopefully the levels will go up enough for chemo to start as planned - we don't want to delay anything now - November is long enough away, without having to go on longer than that!!
The physio came at last too, and got Sarah bending her leg to 50 degrees - gave her exercises for her ankle, and lots of encouragement.

Monday 11th July 2008

A quiet weekend, with nothing to report - physio going well, although I think Sarah has a reaction to the lollipops!! She was tearful and depressed, and she had a headache all day Saturday - some of the side effects of the drup in the lollipops! (I always tell Dave not to read the leaflets inside medicines, or you talk yourself into half the symptoms, but in this instance, I did read them, and Sarahs mood seemed to fit.!!) We stopped the lollipops Sunday and she cheered up again, so maybe they were the problem.She was till able to bend her leg with not much pain so we'll mention it to the doctors when we go back into UCH next Sunday.
This morning, we had to trek into London for a clinic appointment with Doctor Maria, to discuss the results of Sarahs histology report, and the clinical trial we signed up for - I knew this would be a challenge and Sarah didn't disappoint! The study involves you being randomly selected between 2 different types of treatment post-surgery - 1) standard chemotherapy of 4 cycles, then stop, which has a high success rate in good responses pre-surgery(which Sarah was) or 2) standard chemotherapy, followed by 18 months of weekly Interferon injections, administered at home. We both knew what Sarah would say, and we were right! She point blank refused the injections, as she is needle phobic! No amount of persuasion would make her budge.Maria said they would help her get over her phobia, she could do the injections herself, and other things too, but nope, she wouldn't agree. We did warn them, and our view is, that as she may not have been chosen to do the injections anyway, we aren't any worse off - she would have had the standard treatment if that is what the computer had chosen for her, and that has worked for hundreds of people before her.They also don't know if the Interferon would make any difference any way, so it is all speculation. We therefore came home not signed up for the trial, and treatment continues next Monday as before.11 weeks in hospital to go, intermingled with 5 weeks at home-November still seems ages away! One nice thing we did hear Doctor Maria say today was that Sarah was in remission - the surgeons report was good and said all the tumour was removed and there was no cancer left in Sarahs body - that's what we were waiting to hear - lovely to hear it officially though - long may it continue!
This afternoon we collected our new car, and Katie insisted we go out for a drive in it - L plates on, and off we went! nerve wracking for me, but exciting for her! I expect she will be dragging me out at every opportunity now, to get loads of practice. She has her theory tomorrow so fingers crossed for that!

Thursday 31st July - Friday 8th August 2008

Nothing has been posted since our release from UCH as it has been a quiet, non-eventful week, but at the request of Rose and Charlotte, we have updated you all on Sarah's progress here!!
We were allowed home Thursday 31st July at 8pm - the chemo seemed to go on for ages - the start was delayed because of the fire in the Rosenheim building the previous week, so the end was delayed too!! Sarah had been given different medicine for her sickness and it seemed to have worked a treat! Although she had felt sick since Wednesday, she wasn't actually sick at all.
She was desperate to go home, so was really pleased to be let out eventually! Friday was OK, still no sickness, and we even managed a trip to Pets at Home to buy more fish for Sarah's fish tank!! In the evening, Sarah went to Pizza Express for her friend Georgia's birthday party, so she had a lovely time catching up with all her friends and showing off her new leg.
At the weekend, we just chilled out at home.
I managed to do 2 and a half days at work this week, so adult conversation was good to have for a change!! Sarah's non-use of her leg is proving a challenge for me and my back! Everywhere she goes, I have to go too, and everywhere I go, she has to go too!! Trips to the loo on her crutches are hilarious, with Sarah yelling at me to lift her leg, then its too high, then its too low etc....... The Fentanol lollipops are working well, which she has to suck while she is doing her physio with me as a pain killer- this involves me lifting her thigh to bend her knee, and her shouting at me for either holding it wrong, or doing it too much!! She can now bend her knee to about 45-50 degrees when she is cooperating. Still waiting for the community physio to make contact so she can do it instead of me, but we are doing OK.
Monday we had a trip to Sarahs swimming club to say hello to all her friends there - it was nice to catch up with everyone there and update them on her progress.
Wednesday brought the one and only sickness episode, but once it was out, Sarah felt good again and continued to eat her pizza for tea!!
The nurse came Thursday to take blood and in between Sarah playing Brain Training on her DS, she even managed a few grunts in acknowledgement of her being there!! Glad some normality has arrived in our household!! Tonight, Katie and Sarah are having a DVD watching marathon with popcorn and coke, so I expect to be woken in the night with crys of 'I don't feel very well' but we will see!! Managed to get my hair cut today, and am having a massage, manicure and pedicure tomorrow morning, as a present from the hockey team I managed last year, so a pampering day is on the cards - I can then sit and watch the olympics all day too!! I've forgotten what it is like to relax!! It appears that since Sarahs operation, she seems to be much healthier - more cheerful, not as sick, and much more up beat about everything - histology came back on the tumour as a good response (more than 95% dead when removed) so I wonder if the fact that there is nothing in her body to make her feel ill any more is having a positive effect(?). Exactly half way through treatment now (worst half is over), so light is visible at the end of this tunnel we are trapped in. Still 3 and a half cycles to go, but doesn't seem to be nearly as daunting as the first 2 and a half! We wait with baited breath to see if she goes neutropenic over the weekend, but not having been in our local hospital before, we are hoping to avoid it again this time!

Wednesday 30th July 2008

Woke up feeling sick - NOT AGAIN!!! I hate the feeling sick more than the being sick-its horrible and I felt really sorry for myself! Once they gave me some medicine in my Hickmann Line though, I felt a bit better and still managed to eat loads! Went to the playroom this morning and we made a puppet theatre with an artist that came. I made a poster for the notice board too. The physio came at 12, but because I had been feeling sick, I couldn't take my paracetamol so my leg was sore, so I couldn't bend it as much as before! She's coming back tomorrow.
Lesley, my mums friend, came to visit in the afternoon, and she bought me 2 lovely t-shirts. It is really boring at the moment because there isn't anyone here that I really know - I will be going home tomorrow though, so thats OK! I will have 2 weeks at home before I come back again!!

Tuesday 29th July 2008

I had a great day today - I think the medicine has worked!!! I managed to eat loads, and not be sick - yet!!! The physio came and I had to bend my leg for the first time today - I was a bit scared at first because I thought it would hurt alot - it did hurt a bit but not as much as I thought it would!! I had the dressing removed and the blue bandage that the doctors put on after the operation was stuck to the glue they used to stick my skin together!!! The nurse had to soak it to get it all off!!! After lunch, dad came, and I went to the playroom for a bit. After that, the physio came again and I sat on the edge of the bed to see if I could bend my leg a bit further. I got it to about 40 degrees!! It hurt a bit, but not too bad.
After she left, Dennis the Menace came to the ward!! I got a t-shirt, a baseball cap, and a Beano comic. I also got some tricks that came with the comic! The Beano is 70 years old, and Dennis is raising money for CLIC Sargeant Childrens Cancer Charity.

Saturday/Sunday/Monday 26th/27th/28th July 2008

Getting a bit behind because mum was enjoying the sunshine at home too much!!! I wasn't because I don't like being hot! Didn't do much Saturday but Nan and Grandad came up to see me. I was much more cheerful this time, and Grandad was a bit happier seeing me like that and not shouting at my mum!! We had sandwiches for lunch that Nan had made, and talked all afternoon. They went around 4pm. I watched more telly - nothing else to do when you can't walk about!! I'm getting quite good with the crutches thing but I have to up and down stairs on my bum because it wears me out otherwise!
Sunday, my sister Katie was running in the Race for Life at Kempton Park. My friend Georgia came round at 10 and we all set off. We met Katie's friend Rebecca who was running too. It was sooooooo hot we had to sit by the first aid tent because that was the only shade! Katie and Rebecca ran round in about 25 minutes, which was good as it was so hot. Georgia said Hi to me on th microphone at the Capital Radio stand and my mum told everyone about me too, and started to cry!! In the afternoon, mum took me, Georgia and Katie to see 'Angus, Thongs and Perfect Snogging' at the cinema. It was funny.
Sunday night I went to UCH again for the next lot of chemo. I got a room this time, so its nice and quiet! There's no school because its the holidays so there will me more arts and crafts to do, so I'll be happy!! The chemo was delayed until 9.30 at night because they had a fire last week in the building where the chemo is made up and they had to catch up on everyones medicines from last week!! Auntie Janice came in to see me as she was in London having lunch with some old friends. I am trying some different anti-sickness drugs this week to see if they can stop me being so sick-they use it on the teenage ward upstairs, and as I am quite big they said it might work for me - I hope so!! I hate being sick!!

Thursday/Friday 24th/25th July 2008

I got to go home yesterday!! Yippee! My x-ray was fine - I was a bit scared when the lady took off my brace to do the x-ray, but it was OK. I then saw the physio and she showed me how to go up and down stairs - it was really scary at first and I had to sit down at the top of the 4 steps because I was so scared, but when I did it again it was much easier.
When we came home, we had fish and chips, then we went to watch my sister play hockey in Staines. I got a ride out in my wheelchair - it was nice to be in the fresh air for a change!!
I spent all morning Thursday in bed watching telly!! My bed is so comfortable. I only woke mum up twice for the loo, so I got a good nights sleep! In the afternoon Millie came to see me.
Friday I had to get up at 9.15 because the nurse was coming to take my blood and change my dressing. After she left I phoned Georgia to see if she could come and see me - she said yes, but then was ill so didn't come.
This evening I was a bit down on the dumps - I am feeling so well apart from my sore knee, and I don't want to go back into hospital on Sunday. I know I have to, and its not fair. My best friend Rose has moved hospitals so I won't be seeing her any more. I will miss her. Nan and Grandad are coming to see me tomorrow, so that will be nice!! Might cheer me up a bit.

Tuesday/Wednesday 22nd/23rd July 2008

My poo sample came back negative so I haven't got the lurgy!! I am allowed to leave my room and go and play. I can walk on crutches now so its easier to go to the loo. The nurses say that once I have had an x-ray and seen the physio to practice going up and down stairs on crutches (wednesday) I can go home Wednesday!!!! Mum can't wait because she has a bad back from the wooden bed shes been sleeping on - she says she's got bruises all over!! I am happy too - I miss all my friends. We are going to watch my sister play hockey tonight, so we can have a family outing!! At least I get a nice long time at home before going back to hospital for more chemo on Sunday night. I have requested fish and chips for tea as a special treat..........!!!

Sunday/Monday 20th/21st July 2008

This morning (Monday), because I still had a bad tummy, the nurses sent a sample off to the lab for testing in case i had a tummy bug, and they had to put me in an isolation room so I didn't pass any bugs on to anyone else!! Mum was pleased because it was quieter, and we had our own toilet and shower, but I am not allowed out of the room to go and play!! I felt ok, so I was a bit annoyed and very bored. My cousins Jo and Lucy came to see me on Sunday with Katie and Dad - they bought me a great pair of slippers and some yummy sweets. We went to the playroom before I was locked in my room and I went on the computer while they played pool with Katie.
The physio got me standing up again and I even managed to walk to the toilet on my frame today!!
Auntie Janice and Uncle Mike came to see me on Monday, and brought me a sequin picture to make. They saw me standing and walking to the toilet and they thought I was clever!!
Tomorrow the physio is going to make me walk on my crutches!! Still waiting for the sample results to come back so Monday was spent in my room again. Had a restless night, went to the loo 3 times, and had a pain in my leg. I had some medicine and managed to get to sleep.

Saturday 19th July 2008

Had a good day today until bedtime! I felt better, and managed to get out of bed, on to the commode to go to the toilet, and even managed to go into the toilet too!! I ate loads as well, and had crispy duck and pancakes. Dad came and stayed the night in the bed next to me, and mum went to her room for a good nights sleep for a change - good job, because I was up all night being sick - too much food!!. Poor dad had to sort me out and clean me up, change my sheets and get me on to the commode! When mum came back in the morning at 7.30, she sent dad back to the room for some more sleep - the nurses told her he had coped with it all very well!

Friday 18th July 2008

Felt a bit rough today as I really need to go to the loo, but can't get on the toilet to go!! Nan and Grandad came to see me today and brought me some craft things to do. I was a bit grumpy as I had loads of Oramorph (morphine) for the pain in my leg and some Piriton to help with my itching that I've got from the Oramorph!!! All this medicine makes me sleepy! This afternoon the physio got me on to a commode to try and go to the loo but it didn't work! At least I got up off the bed today - it hurt alot!
Later on, I got back on the commode and I did go to the loo - yippee!! I then felt much better and wanted to eat loads - I hadn't eaten since Monday night! Its horrible keep talking about poo and weewee, but thats all the nurses seem to do in hopsital - I wish they would just leave me alone!
Everyone in the ward here has gone home tonight, except me, a boy called Joseph and another little girl. Its really quiet,and mum got to sleep in the bed next to me last night - she was more comfortable but still kept snoring as usual!

Thursday 17th July 2008

What a day this has been !!!! Last night, my temperature was still high, so they sent me down for a chest x-ray at 10.30pm! The radiographer had to come in from home especially! It was really spooky going down there when no one else was about. The doctor had a look at the x-ray and it was OK, so it wasn't that making me hot. They had a think about me and decided to leave everything as it was last night- this morning I woke up and they changed my antibiotics to 2 lots,and it has helped. My temperature has been fine all day.
I had a bed bath today with a nurse and my mum.Then the nurse came in and took the 2 drains that were on my leg out - it hurt and I screamed!! Then the same nurse took out my epidural - the fine tube that was in my spine, having medicine pushed down it stopping my leg from hurting. I was very scared and I cried when she took it out, but once it was done it felt much better and my back isn't sore any more. I've now got to take medicine for the pain if I get any.
Once I had that out, the physiotherapist came and the nurse took of my backslab cast and all of my dressings. I saw the scar-its not as big as I thought it would be, and it isn't all bloody either!!
Mum said they had made a good job of it and the doctor was good at sewing!Some of the scar has been glued together, and the bit over my knee cap has stitches!!! The only trouble is that there is a bandage stuck to the glue - the nurse said she will leave it on until the glue dissolves, or it will hurt!
The scar is about 30cm long from just above my knee cap.The nurse put a smaller white dressing on the front of my leg and the physio put a splint on my leg to keep it straight. Then she sat me up on the edge of my bed, and I put my good leg on the floor. I went a bit dizzy because I hadn't sat up for 3 days but it felt great to sit up again. I put my own pyjamas on and felt better.
We also watched a magic show by Magic Dave and Daisy the Cow!! They came on to the ward and he was really funny!
I decorated some candles today then tried to have some tea but I was sick all over my clean pyjamas and mum and the nurse had to change me again!!!I was really tired after all that so I went to sleep. Nan and Grandad are coming to see me tomorrow so I hope I feel better by then!

Wednesday 16th July 2008

Mum writing this - Sarah is asleep!!
Yesterday was incredibly traumatic for all of us. We were first on the operating theatre list so were woken up at 6am to prepare Sarah for surgery. She had a wash, and cleaned her teeth and put on her sexy hospital gown and paper knickers!!! We were taken down at 8.30 and Sarah was put to sleep at 8.45am. Dave and I walked around the hospital and had a full fried breakfast to try and calm us down a bit!! (It didn't work!) We watched a bit of telly and were called back to the recovery room at 12.50pm. It was the longest 4 hours of our lives!! Sarah was awake when we got there and a bit upset because her throat was sore from where they had put a tube down her throat to give her oxygen. She had some painkillers and calmed down a bit. She wiggled her toes to show that her bad leg was still working and the surgeon came and told us it all went well, and he had removed the tumour completely - yippee!! Sarah now has a back-slab cast on (one that doesn't go all the way round the front, just on the back of her leg to hold it straight, and loads of bandages. She has an epidural in her spine to block the pain signals so she says her leg isn't painful. We spent the night in the High Dependancy Unit so they could keep an eye on her. I had to sleep on a plastic chair leaning on the edge of Sarahs bed - not to be recommended!! Dave slept on the ward on the camp bed I had managed to find the night before!. Sarah had a bit of a temperature over night, and had to be rolled over twice to stop her getting bedsores. She cried a bit because it was so sore, but she was very brave. The worst bit is over now, and all we have to concentrate on now is getting her sitting up and walking about on her crutches - that should be fun..................

Monday 14th July 2008

I stayed in bed all morning today, after I was sick this morning! I was going to go to school but changed my mind. After I was sick I felt better, and managed to eat cheerios for breakfast and had mash and beans for lunch - my favourite meal at the moment. I had a bath and got dressed and we left for the hospital at 2pm. I got a nice bed in the corner and we can open the windows so we get some fresh air. The nurse came and asked questions, and the man who will put me to sleep told me what he was going to do. A surgeon came and asked me some questions too, and drew 2 arrows on my leg! Mum thought he was going to play noughts and crosses! He did it so they cut the right leg open! Then Mr Pollock, my surgeon came to see me and examine me ready for the operation. He explained what he was going to do. I don't really want to know! I had loads to eat as I can't eat after midnight, and I can't drink anything after 6am!
I am first on the list in the morning and I am going to Intensive Care afterwards for 24 hours so I won't be able to write anything for a couple of days, and then I will be the bionic woman and can write all about it!

Saturday/Sunday 12th/13th July 2008

Had quite a good day today - got up about 10.30, had breakfast and went to A Country Affair. On our way in, a lady gave us 3 guest passes so we got in for nothing!!! It was OK, but not that great - I got a new pashmina -white with black stars on it. I also got a little light in the shape of an angel- it changes colour really slowly, and its really pretty. On the way home, we went to Pets at Home to complain 4 of my new fish died, and they gave us 4 new ones for nothing!!! I went to Tescos with mum, and bought loads of food to take to hospital!!
When I went to bed, I was really sick!! I had eaten too much, a whole giant packet of spare rib flavoured Sensations!!! I felt better afterwards though and had a good nights sleep!
Sunday was a lazy day. I stayed in bed until 12 o'clock, then got up for breakfast/lunch! At 3pm, I went to see mamma mia at the cinema with katie and mum. IT WAS FAB!!!! Mum said it was the best film she had seen in ages, and she cried at the wedding!! She's so silly!!
I played with my friend Emily then went to bed early.

Friday 11th July 2008

My last day at Trafalgar!!!!! I had to get up at 8 am this morning which was a bit of a shock because I usually lie in until about 10am in hospital!! We went to Teddington School first to see the 'Pastoral Manager' who will make sure everything is OK for me when I go in to school in September. She wrote down all the things mum and dad told her, and will organise some lessons to be done in the canteen instead of me having to walk around school and go up and down stairs!! She was really nice.
Then I went to school. I had a nice day with my friends, and I took loads of pictures, and got everyone to sign my t-shirt. In the afternoon, we had achievement assembly - it was supposed to be in the hall but someone set the fire alarm off and the fire brigade came in fire engines and everything!!!! We had the presentation in the classroom instead, and I got my book 'Paddington Abroad' as a present from the school.
I had crispy duck and pancakes for tea, and watched Big Brother on the TV. If its not raining in the morning, we are going to 'A Country Affair' in Richmond - a big country fair at Old Deer Park. I hope its sunny.
Chris Henry, the nurse from Stanmore Hospital phoned today and said my operation is on Tuesday now, so I get an extra day at home. We have to go in on Monday afternoon instead of Sunday.

Thursday 10th July 2008

Last day in hospital today before my operation! Went up to the playroom upstairs and got loads of stuff to do - I did mosaic tile coasters - I made one with a K on it for my sister, and I did some braiding. This afternoon I went to school and did mental maths and then made a secret book again like I did 2 weeks ago, but I finished it this time!!! I was quite hungry today and I had a cheeseburger happy meal for lunch, plus a munch bunch yoghurt, and some quavers. I drank loads of milk and had tomato soup too ! Katie came to see me today and we played games while we waited for my blood results. At 5.30pm the nurse told me I was clear and could go home - she disconnected me from my drip and I was free!! I like that bit!! I have put some pictures of the type of knee I am going to have on my blog! It looks like Robocop!!! The big spike at the bottom will go in to the bottom of my shin bone to hold it in place, and the spike at the top will go in to the bone in my thigh to hold it all together. The big silver bit is the knee!! It won't ever break, and it will be really strong!! Its really heavy too - heavier than a metal hammer!! I thought it was too heavy for me, but it is made the same weight as the bone they will take out!!
I am going to school tomorrow for the last ever day at junior school - I am really sad, but I will take loads of pictures!

Wednesday 9th July 2008

Not a bad day today - I woke up about 9am and watched a bit of telly - I had quavers for breakfast!!! At 10.30 I went upstairs to collect a mirror to paint from the play lady, June. I painted it in my room - its got paw prints all over it saying 'Sarah's mirror, paws off!' I made mum go out in the rain and buy me chicken nuggets again for lunch - she got wet!! I went to school this afternoon, and Chris Henry, the bone tumour nurse came to see my mum to tell her all about my operation. She brought in a false metal knee to show us, and she came in to school to show me what it looked like and what was going to happen!!! It will be really strong, and it will move like a real knee - I will still keep my knee cap too, so it will look like the other one except I will have a big scar. Its really clever because it will have a magnetic motor inside it that can make the knee grow if I get taller, without having another operation!!!
After school, we had a little party for a boy called Chris who finished his last chemo today - he had a new knee in February and he's finished his treatment now. I can't wait until it's my turn for a party for my last chemo - you get a present too!!! I'll have to wait until November!! We had coke and lemonade, crisps, chocolate cake and haribos!! Dad and Katie came to see me too, and Katie is soooooo brown - she's been on holiday in Cyprus - my favourite place!! We are going to Disneyland Paris at Christmas though, from my wish that I asked for from Starlight Childrens Charity!!!! So I'm not that jealous really!!!
My Methotrexate level was 0.38 today and it has to be less than 0.1 before I can go home, so we are here for another night!!!
Will write more tomorrow xx

Monday, was OK - I started my hydration at 6am and had to take a tablet at midnight and 6am!! I would sleep really well in hospital if they didn't keep waking me up!!!
I went to the playroom at 10.30, but Jessie, the play specialist was on holiday so mum and I started making the ragdoll that Sophie had given me. I did the cutting out, and pinning together, and mum did the sewing.
Chemo started at 12 o'clock and lasted for 4 hours - this one isn't too bad, but it makes your wee go BRIGHT YELLOW!!!! I went to school tafter dinner too - we did English and I wrote a poem about the sun -it goes like this:-
What is the Sun?
The sun is like a piece of hot crispy brown toast popped out of the toaster
The sun is like a yellow soft sunflower swaying in the cornfield
The sun is like a round fat shiny clock ticking on the town hall wall
The sun is like a delicate light bulb glowing in the dark
The sun is like a rough rubber baseball whizzing across a playing field
Its like a furry warm apricot waiting to be eaten

Mum really liked it, and so did Rachel, my teacher!
At tea time, we were told they had a baby coming in and she had had an infection so needed our room, so we had to move! There was only 1 bed left and it was the smallest bed in the bay. They just pushed me out in my bed so they didn't have to make a new bed for me!
I was really sick Monday night - all the MacDonalds I had eaten. The nurses gave me nozinan which is a antisickness medicine which makes you sleepy. I fell asleep and every time I got up to go to the toilet in the night, I shouted at my mum - I told her I hated her and she was an idiot!!! I don't remember saying that - I didn't mean it!!
Tuesday morning I didn't wake up until 10, and had 2 hash browns from MacDonalds for breakfast! I didn't go to the playroom because I was sleepy, but I did do some more of my ragdoll - mum had finished the legs and I stuffed them - we went upstairs to the playroom to see the lady there because we ran out of stuffing, and she had some more.
In the afternoon I went to school again and did drama with some drama students - we made hand puppets out of socks, and mine is called Grumpy Grainger.While I was gone, mum managed to get us in to another room, so when I came back I was in my 3rd bed since Sunday!!! Hopefully we can stay here this time!
I couldn't stop eating Tuesday night - I had chicken nuggets for lunch, I had sausage hotpot for tea, and tomato soup - and fruit cocktail, Oreos, and quavers!!!! Mum thought I was going to be sick, but I wasn't!!

Tuesday 8th July 2008

Hi everyone!
Couldn't write before today because the hospital computer had blocked my blog!! Said it had 'adult content'!!! We reported it and today they have released it, so I can write again!
Anyway, we came in Sunday night and were given a room - it's so much nicer to have a room, as you can walk around and use your own toilet, and you don't have to whisper in the middle of the night! Apart from having my blood taken and seeing a doctor to check me over, nothing happened!!

Saturday 5th July 2008 - HSM Day!!!

Woke up quite early considering mum took me to West Middlesex Hospital last night because she thought I was 'Looking Pale'!! She thought I might need a blood transfusion!! I told her I felt OK, but she insisted on taking me any way! We got there at 9.45pm, and by 10.45pm, the doctor still hadn't come because he was treating a sick baby, so we gave up waiting and mum took me home. The nurses didn't like it much,but I felt fine, and I was tired and wanted to go to bed!
When I got up I still felt OK, so mum took me to Pets at Home and I bought some more fish for my aquarium. I bought 4 guppys, 2 bottom feeders, and a Japanese Fighting Fish - its pink!! He doesn't look very happy at the moment so I hope he will be OK!!
Dad took us up to the Hammersmith Apollo at 6pm for High School Musical, and we picked up our tickets from the boxoffice. We were in the wheelchair spaces, which was like having our own special box - it was at the back, but higher than everyone else so we could see over everyones heads. We were the only ones in there so it was like our own private box! It was a premier tonight in aide of the Great Ormond Street Charity so there were loads of celebrities there with their kids - we saw Linford Christie, Jason Donovan, Vanessa Phelps, Linda Robson, Bonnie Langford, Michael Ball, David Grant and Gillian McKeith, and I got autographs from Bonnie Langford, Michael Ball, Gillian McKeith, and David Grant. The show was fab - me and mum were singing at the back!!
Afterwards, we had to wait a bit for the limo jeep to pick us up, so we went to the stage door, and got the autographs of a few of the cast too. Then we got the limo jeep home - it was cool with all the disco lights flashing and the music on!! I really had a great time, and my mouth ulcers are nearly gone too!!!

Friday 4th July 2008

Happy Independance Day all you Americans (do I know any???!!!)
Back to me now - ulcers are nearly gone, but my mouth is still sore. I got up at 10am because the nurse was coming - She came and changed my dressing and took my blood test. She looked at my mouth and said it didn't look too bad( it is, its really sore!!). Waited in for the wheel chair man and he hadn't come at 12 o'clock - dad phoned them at 12.30 and went mad at the lady because she said they had cancelled again!!! They came at 1pm - they must have been scared of him-he nearly threatened them with my mum-scary!!! I went to school at 2pm, and then went to Millie's for tea. I managed to have lasagne and 2 flapjacks!
came home and had fish fingers and mash (I was hungry!!Haven't eaten really since Saturday!!)
I'm going to bed early tonight coz I'm going to HIGH SCHOOL MUSICAL TOMORROW!!!!! Yippee!!! I'm so excited!
Will write on Sunday and tell you what it was like!

Thursday 3rd July 2008

Well, my ulcers were a bit better today - although my lip was bleeding in the night and I woke up with blood on my pillow - yuck!!!!
Mum made me get up at 10.30 and I even managed to clean my teeth a bit with a cotton bud and a tiny bit of toothpaste, so my breath isn't so bad today!! I washed my mouth out with a mouth wash too so hopefully the ulcers will start to heal.
I had a milkshake for breakfast, and we were going to go to the cinema to see Prince Caspian, but it was 2 hours and 25 minutes long and I couldn't be bothered to sit there for that long! Instead I asked mum to take me 10 pin bowling. We went for 1 game and half way through I was really sick - all over mums cardigan, my trousers, the floor and in my shoes!!!! Luckily we were the only ones there, so no one saw and mum managed to clear it up without anyone noticing! I felt better afterwards, and I made mum finish the game and I beat her by 1 point - lol!!!!
I went home after that (with no shoes on because they were full of sick!)and had a rest before Georgia came round with Hannah - they really cheered me up. I managed to eat mash and beans and a yoghurt for tea,and I had a bath and cleaned my teeth again so I smell nice and sweet again!
I am going to try and go to school tomorrow after the nurse has been to change my dressing and taken my blood, and the wheelchair people have been to put my legrest on my wheelchair for after the operation. I hope I feel well enough - I really miss school and there aren't many days left for me to go!! Keep the comments coming - they're great!!