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................
Tuesday 30 September 2008
Sunday 28 September 2008
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!
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 20 September 2008
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......
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 16 September 2008
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...........
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 11 September 2008
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............??
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 5 September 2008
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!!
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 3 September 2008
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.
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.
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