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!!