Apologies for not writing sooner. normal life is busy,and there's not so much time to dwell on past agonies, and no time at all to sit at the computer and type! Since last writing, we have been back to UCH for the next 2 monthly check up and all was well. Chest x-ray was clear and they were really pleased with how Sarah was doing - they said she looked fantastic and healthy which was a relief all round following the worry we had about her sore foot a few weeks before. We have had Sarah's cousin Jo's 30th birthday party too, which was a lovely evening, and a chance for the whole of the Leeson clan (my family!!)to gather together for a night out! First time in ages, and it was lovely to see my 2 uncles again after so long! It was nice for them to catch up with Sarah too, as they had all been worried, and they couldn't believe she looked so well after all she had been through. Sarah had a lovely time boogying the night away, but we had to leave fairly early as Katie had a hockey final on Sunday morning in Surbiton the next day! We made the trip back and it was worth it as they won 4-2 - a lovely way to finish off Katie's Teddington hockey career before she heads off to the States to her University.
This week has been half term, and Sarah has been to the gym! She went on the rowing machine, the running machine (more a walk, but it went quite fast!) and the cross trainer - once she got going she was going great guns, and she is really keen to go again - Katie is taking her on Tuesday! I'm all for it if it means she is exercising that leg!! This hot weekend meant we were pestered by Sarah to get the pool up - we started filling it up yesterday and it took until today to fill it completely! Sarah had some friends over, and it was FREEZING!!! BUT they got in and even managed to swim - they were in there about 4 hours, and she was like ice when she got out. Still, a nice hot bath sorted her out, and she's safely tucked up in bed and ready for school tomorrow. We had her school report last week and it was amazing! Considering how much school she missed, she didn't get less than a 5a, and actually got mostly 6's, which is above average for her year.I am so proud of how well she is doing, both with her school work and her walking/recovery. We are so busy now, we barely have time to sit and brood over what could be/might have been - I suppose that is one way to cope with the post traumatic stress.Our next appointment is next Monday at Stanmore - leg x-ray and a check up, and the next time we go to UCH will be exactly 1 year to the day that Sarah had her operation - 15th July 2008 seems so long ago, but only 1 year has gone by - but how far we have come. All the children going through this are so resiliant and brave, it is a joy to behold - we hear news from all of them and it makes us pleased and proud of every single one of them. All we can do is pray that their recovery is complete.
Sunday, 31 May 2009
Wednesday, 6 May 2009
Wednesday 6th May`
Sarah is MAD - its official!! Just thought I'd add that - prancing about singing and dancing - MAD I tell you, MAD!!!! Wouldn't change it for the world................and she says she's going to try and go to school with no crutches again tomorrow - pain in foot seems to be going away...doesn't stop her dancing anyway!!
Tuesday, 5 May 2009
Tuesday 5th May
A bit of worry has been going on in the Ardrey household over the last few weeks. Sarah developed pain in her foot, which I put down to her returning to school after Easter without crutches, with soft, ridiculous 'fashionable' shoes, and hence pain. She went to physio, and she filled me with dread. She was waking at night, complaining it hurt, just like the cancer had returned. She and I were petrified it had come back, so straight on the phone to the specialist bone tumour nurse. She said it was highly unlikely, put a tubigrip on, and see how it goes. Over the weekend, I had to massage it twice daily, and give Nurofen. By Monday, it was still hurting, and I was a nervous wreck, so on the phone again to book an appointment for an x-ray. Bolsover Street Thursday, 9 x-rays at various points around her foot, and ankle, and 4 hours of waiting. Eventually, we saw Dr Pong (!!?) who said it all looked OK, leg was straight, and we had to assume it was a stress injury that might not be showing up yet. She was to carry on as normal and go back to crutches until it stopped hurting. Panic over!! Since then, she still gets me to massage the foot, but I think she's winding me up, and just likes it!! If you don't mention it, she doesn't say anything, and even went to a Laserquest party last night and spent an hour and a half running about shooting people! We have an appointment with Maria at UCH next Wednesday, so will hold our breath for a while longer, but fingers crossed all will be well again. Pictures are for Charlotte, who wanted to see the thatch of hair Sarah has grown. So curly its funny!!! I showed Sarah the picture of the back curls,and she said she had no idea what it looked like, and didn't know it was sooooo curly!!.
Thursday, 16 April 2009
Thursday 16th April 2009
Laughter and lots of it is what we've had over the last few days! I haven't seen sarah this happy and content for over a year. We have seen friends and family, been on trips to the cinema, and there has been walking - albeit with me following behind singing the Pingu theme tune(Sarah waddles like a penguin because she walks with her leg locked!!)but she's walking and its wonderful!!. She is willing to leave the house without crutches, (we went to the cinema without them last week) and she only took 1 for a trip to Richmond shopping with her sister 'just in case'!! I'm nearly on the verge of losing them altogether! The physio is coming next week to watch sarah riding her bike (!!""??) and climbing stairs - how she is going to ride her bike I have no idea - I keep panicking she will lean over to the right, stand on her bad leg and fall right off and break it - but we've got to start somewhere I suppose!! Sarah's hair is so long now and madly curly its hilarious!! When its wet, her fringe nearly reaches her eyebrows, but its got so many kinks in it, it looks really short! She spends ages every bath time in front of the mirror, trying to get a Danny Zuko quiff at the front - she finds it so funny! Laughter - so much laughter - and how happy we all are at last!
Wednesday, 8 April 2009
Wednesday 8th April 2009
Well, 1 year and a day from Sarah's diagnosis, we are here, and progress is being made. Actually, things are so nice and NORMAL that the anniversary of that awful day almost passed unnoticed in the Ardrey household. I had remembered it was looming, but we had a fab weekend, and it slipped our minds! I took Katie to Hillingdon to do her ACT test for her university in the USA on Saturday morning, then came home, bet on the Grand National and lost, took Sarah bag packing in Waitrose with the guides,pottered around and had chinese takeaway for tea. Sunday, we had a lovely lie in - haven't slept past 8.30am in months and we were still in bed and asleep at 10.30!!! Wonderful, and really needed! In the afternoon, I took Sarah to the park for a game of tennis as I had promised. She walked from the car to the court with no crutches on the flat bits, and with 1 crutch on the hills. We had a giggle at her stumbling around the court,and missing the balls that weren't close enough for her to hit, but we were there, and laughing, and being active - it was great!
I took her to physio on Monday and she was very pleased with Sarah's progress - she said her walking had improved, her exercises were better, and she was getting stronger.
Monday night Sarah went to swimming club, and after her session, as it was Easter, they kept the slide open and Sarah went on the snake slide - she climbed up the 4 flights of stairs to the top and down she came, grinning from ear to ear! She then got up, and did it again, and again, and again!! Better exercise for her legs than anything else I have tried to get her to do!! Tuesday - 'D' day - then came and went - oh what a difference to 12 months ago - no hospital appointment, no team of specialist nurses there to pick us up from the floor and tell us it would all be OK; just us working, and Sarah playing with friends. What a relief.
And what a turning point too - it seems Sarah has found the use of her leg from somewhere in the depths of her brain. I always said it was in her head, and she needed to want to do it - well, Tuesday she went to her nieces house to play (Shai is 12), and ended up going to Hounslow for pizza by themselves, and a trip round the shops. They came home on the bus, and she had a sleepover.She has had a taste of independance and its lovely to see.She's now asked me to get her an Oyster card so she can go out more often!! Today, she has been out in the garden, walking about playing swingball, and not a crutch in sight!! She's been up steps, down steps, and in and out of the shed to get garden toys, and didn't even bat an eyelid when I said if she carries on like this, she won't need her crutches when she goes back to school in 2 weeks time! It is amazing to think, that just 1 month ago she was nervous, and wobbly, and refused to leave the house without her crutches - now there's no stopping her. She still walks really slowly, and there is a slight limp(bigger when she's not concentrating!) - her technique needs some work, but I think she has realised what she has been missing having to carry the crutches around with her all day, and no amount of nagging and pleading was going to get her to realise it - she had to find out for herself and she has at last - roll on summer, and long may this wonderful life continue!!
I took her to physio on Monday and she was very pleased with Sarah's progress - she said her walking had improved, her exercises were better, and she was getting stronger.
Monday night Sarah went to swimming club, and after her session, as it was Easter, they kept the slide open and Sarah went on the snake slide - she climbed up the 4 flights of stairs to the top and down she came, grinning from ear to ear! She then got up, and did it again, and again, and again!! Better exercise for her legs than anything else I have tried to get her to do!! Tuesday - 'D' day - then came and went - oh what a difference to 12 months ago - no hospital appointment, no team of specialist nurses there to pick us up from the floor and tell us it would all be OK; just us working, and Sarah playing with friends. What a relief.
And what a turning point too - it seems Sarah has found the use of her leg from somewhere in the depths of her brain. I always said it was in her head, and she needed to want to do it - well, Tuesday she went to her nieces house to play (Shai is 12), and ended up going to Hounslow for pizza by themselves, and a trip round the shops. They came home on the bus, and she had a sleepover.She has had a taste of independance and its lovely to see.She's now asked me to get her an Oyster card so she can go out more often!! Today, she has been out in the garden, walking about playing swingball, and not a crutch in sight!! She's been up steps, down steps, and in and out of the shed to get garden toys, and didn't even bat an eyelid when I said if she carries on like this, she won't need her crutches when she goes back to school in 2 weeks time! It is amazing to think, that just 1 month ago she was nervous, and wobbly, and refused to leave the house without her crutches - now there's no stopping her. She still walks really slowly, and there is a slight limp(bigger when she's not concentrating!) - her technique needs some work, but I think she has realised what she has been missing having to carry the crutches around with her all day, and no amount of nagging and pleading was going to get her to realise it - she had to find out for herself and she has at last - roll on summer, and long may this wonderful life continue!!
Thursday, 2 April 2009
Thursday 2nd April
Not much to report really over the last 9 days - more of the same - physio, exercises, walking, school, physio, more walking, lots of laughter, a few tears, but everything NORMAL.
A little bit of trouble at school - Sarahs friends have gone off the idea of Sarah being the centre of attention now she not 'ill', and have therefore got bored of sitting with her at break and lunch, and want to go off and do things that kids do at school. Sarah has therefore felt a bit hard done by and friendless - Sarah has had to find friends who want to sit with her because she's Sarah and not because she is different. Took a bit of doing, but we got there in the end. I think all of them need some time away from each other - it has been Sarah's first term back at school since the end of treatment, and its taken its toll. She's tired and fed up, her friends are bored with her situation, and they all need the Easter holidays.
Anyway, her real friends have stuck by her, and the others have drifted away, and we have reached equilibrium - all is calm, she is happier now, and Easter starts tomorrow lunchtime.Her walking is improving - she hardly uses her crutches at home now, and I have even managed to get her to go to guides with only one crutch now for 2 weeks running.She goes to school with 2 crutches, but takes one to the office JUST IN CASE. She's not ready to leave it at home just yet, but I have told her we are going to after the Easter break. We'll see if it works. I think she walks better with only one. Its almost without any limp at all when she thinks about it.Over Easter I have said we are going to walk loads and play Tennis ......she is horrified, but it will be fun - might need to enlist Katie to do the running on her side of the net, but it might get her moving.Now the evenings are getting longer, lets hope we can get out and about.
Sarah had to have 2 days off school this week with a tummy bug - and of course my mind started racing again - what type of tummy ache? What type of pain? Anywhere else? Why is she so tired? Headache? Sure you are OK? etc.etc. but she has been back to school today, and is back to normal, giggling, and being daft as usual. Just a tummy bug - will there ever be 'just' a 'normal' illness, or will we always live in fear? I'm sure it gets better over time, but at the moment its hell.
A little bit of trouble at school - Sarahs friends have gone off the idea of Sarah being the centre of attention now she not 'ill', and have therefore got bored of sitting with her at break and lunch, and want to go off and do things that kids do at school. Sarah has therefore felt a bit hard done by and friendless - Sarah has had to find friends who want to sit with her because she's Sarah and not because she is different. Took a bit of doing, but we got there in the end. I think all of them need some time away from each other - it has been Sarah's first term back at school since the end of treatment, and its taken its toll. She's tired and fed up, her friends are bored with her situation, and they all need the Easter holidays.
Anyway, her real friends have stuck by her, and the others have drifted away, and we have reached equilibrium - all is calm, she is happier now, and Easter starts tomorrow lunchtime.Her walking is improving - she hardly uses her crutches at home now, and I have even managed to get her to go to guides with only one crutch now for 2 weeks running.She goes to school with 2 crutches, but takes one to the office JUST IN CASE. She's not ready to leave it at home just yet, but I have told her we are going to after the Easter break. We'll see if it works. I think she walks better with only one. Its almost without any limp at all when she thinks about it.Over Easter I have said we are going to walk loads and play Tennis ......she is horrified, but it will be fun - might need to enlist Katie to do the running on her side of the net, but it might get her moving.Now the evenings are getting longer, lets hope we can get out and about.
Sarah had to have 2 days off school this week with a tummy bug - and of course my mind started racing again - what type of tummy ache? What type of pain? Anywhere else? Why is she so tired? Headache? Sure you are OK? etc.etc. but she has been back to school today, and is back to normal, giggling, and being daft as usual. Just a tummy bug - will there ever be 'just' a 'normal' illness, or will we always live in fear? I'm sure it gets better over time, but at the moment its hell.
Tuesday, 24 March 2009
Tuesday 24th March 2009
Why do I keep walking around with a knot in my stomach? Why do I keep bursting in to tears sitting in traffic on my way to work?
Because, no matter how well we think everything is going, it could all change in a moment - I can't get away from the feeling that it has all been too easy so far - yes, Sarah was diagnosed quickly (within 1 month of the first x-ray-some kids wait years before doctors recognise whats wrong), yes, Sarah coped with her treatment really well, yes, the surgeon said he got the whole tumour out and the operation was a complete success, yes, the tumour had a good response and was more than 90% dead when it was removed, and yes, although I didn't think it would ever happen, she is starting to walk again - but the truth is, we will never be able to relax again. I can't look to the future - I can't let myself look too far ahead - I keep saying to myself what if.....and its just not bl**dy fair.Every time she says she has a headache I panic - If she's tired, I panic - if she gets sweaty at night, I panic, and if, like last night she screams in pain because her leg is stuck in one position, I panic. We only went for her check ups 2 weeks ago, so I know its OK at the moment, but I can't ever see me not worrying whenever she says she doesn't feel well.
I am using this blog now as therapy, so excuse my ramblings - maybe I need counselling, maybe just a good holiday, but most of all what I need is my daughter to be told that she is completely cured, and we have absolutely nothing to worry about.But that just isn't going to happen. Hopefully, and I really mean hopefully, time will pass, check-ups will come and go, and life will get back to normal(or as normal as we will ever get). But to me, the further we get from end of treatment, the more the risk - and I just hate it!! I have no reason to feel like this - everything seems fine - Sarah is well, her leg is getting stronger, she is getting stronger,and life is good. I think, as a good friend said to me recently, it is just hitting me what we have been through - they said 'You have all coped so well - one day this will all hit you like a ton of bricks' - well I think it's hit!!
That's enough from me - now to Sarah!
Last Wednesday she did her first swimming gala since her diagnosis - and she was FAB!
She was self-consious, because she started in the water when everyone else dived in, but she swam well, and came 4th - missing 3rd place by 6 inches - I think if she could have managed a dive, she would have clinched it!She was cross she didn't get a medal, but her teacher made sure she got a trophy as he thought she did so well!Not awarded in front of everyone at the end, but that didn't matter. In the relay they came 3rd out of 3, but for me, just the fact that she was there and wanting to be part of it was fantastic - and very brave.Her friends were lovely too - they didn't blame her for swimming slowly - they told her she did really well, which was lovely.
Thursday, we set off for a lovely school day trip to Boulogne. I got to go as a parent helper, as I had to supervise Sarah, and it was a long, but enjoyable day. The weather was great, and Sarah managed to walk miles (on her crutches, but still!!) - from the top of the old town, right through and down to the sea, along the seafront, to the beach! It took about an hour in all, but I kept saying it was good training for the Race for Life!!
She bought a postcard and stamp (in French)and sent it to Daddy and 2 pain au chocolat in the boulangerie......good job I could remember a limited amount of French!! We returned at 10pm, and she was wacked out! Still, she got a lie in Friday as she had physio, so didn't have to get up 7am for school!
Saturday night, we went to the hockey club race night, and we won 2 spa vouchers for 'owning' a winning horse, and Sarah came 2nd in the 'money won' competition, and won a £40 voucher for an indian restaurant in Twickenham!! Good night all round!
Mothers Day was lovely too - we went for a walk to the park with her friend Eleanor(on 1 crutch all the way)and she walked her friends dog, and played on the swings for the first time in a year. It was so nice to see her swinging up and down, and looking like a normal child again. We then went out for a lovely meal at a fish restaurant before taking Katie back to school.
Normal life - oh how fabulous it all is, and how I soooo don't take any of it for granted!
(promise not to get all morbid in future - only positive thoughts from now on........)
Because, no matter how well we think everything is going, it could all change in a moment - I can't get away from the feeling that it has all been too easy so far - yes, Sarah was diagnosed quickly (within 1 month of the first x-ray-some kids wait years before doctors recognise whats wrong), yes, Sarah coped with her treatment really well, yes, the surgeon said he got the whole tumour out and the operation was a complete success, yes, the tumour had a good response and was more than 90% dead when it was removed, and yes, although I didn't think it would ever happen, she is starting to walk again - but the truth is, we will never be able to relax again. I can't look to the future - I can't let myself look too far ahead - I keep saying to myself what if.....and its just not bl**dy fair.Every time she says she has a headache I panic - If she's tired, I panic - if she gets sweaty at night, I panic, and if, like last night she screams in pain because her leg is stuck in one position, I panic. We only went for her check ups 2 weeks ago, so I know its OK at the moment, but I can't ever see me not worrying whenever she says she doesn't feel well.
I am using this blog now as therapy, so excuse my ramblings - maybe I need counselling, maybe just a good holiday, but most of all what I need is my daughter to be told that she is completely cured, and we have absolutely nothing to worry about.But that just isn't going to happen. Hopefully, and I really mean hopefully, time will pass, check-ups will come and go, and life will get back to normal(or as normal as we will ever get). But to me, the further we get from end of treatment, the more the risk - and I just hate it!! I have no reason to feel like this - everything seems fine - Sarah is well, her leg is getting stronger, she is getting stronger,and life is good. I think, as a good friend said to me recently, it is just hitting me what we have been through - they said 'You have all coped so well - one day this will all hit you like a ton of bricks' - well I think it's hit!!
That's enough from me - now to Sarah!
Last Wednesday she did her first swimming gala since her diagnosis - and she was FAB!
She was self-consious, because she started in the water when everyone else dived in, but she swam well, and came 4th - missing 3rd place by 6 inches - I think if she could have managed a dive, she would have clinched it!She was cross she didn't get a medal, but her teacher made sure she got a trophy as he thought she did so well!Not awarded in front of everyone at the end, but that didn't matter. In the relay they came 3rd out of 3, but for me, just the fact that she was there and wanting to be part of it was fantastic - and very brave.Her friends were lovely too - they didn't blame her for swimming slowly - they told her she did really well, which was lovely.
Thursday, we set off for a lovely school day trip to Boulogne. I got to go as a parent helper, as I had to supervise Sarah, and it was a long, but enjoyable day. The weather was great, and Sarah managed to walk miles (on her crutches, but still!!) - from the top of the old town, right through and down to the sea, along the seafront, to the beach! It took about an hour in all, but I kept saying it was good training for the Race for Life!!
She bought a postcard and stamp (in French)and sent it to Daddy and 2 pain au chocolat in the boulangerie......good job I could remember a limited amount of French!! We returned at 10pm, and she was wacked out! Still, she got a lie in Friday as she had physio, so didn't have to get up 7am for school!
Saturday night, we went to the hockey club race night, and we won 2 spa vouchers for 'owning' a winning horse, and Sarah came 2nd in the 'money won' competition, and won a £40 voucher for an indian restaurant in Twickenham!! Good night all round!
Mothers Day was lovely too - we went for a walk to the park with her friend Eleanor(on 1 crutch all the way)and she walked her friends dog, and played on the swings for the first time in a year. It was so nice to see her swinging up and down, and looking like a normal child again. We then went out for a lovely meal at a fish restaurant before taking Katie back to school.
Normal life - oh how fabulous it all is, and how I soooo don't take any of it for granted!
(promise not to get all morbid in future - only positive thoughts from now on........)
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