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!!!
Sunday, 28 December 2008
Wednesday, 17 December 2008
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!!!
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, 8 December 2008
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!
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, 27 November 2008
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!!
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, 24 November 2008
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!
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, 18 November 2008
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!
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!
Wednesday, 12 November 2008
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.
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.
Subscribe to:
Posts (Atom)
