This afternoon sees us meeting with one of Leo's specialists from over a year ago in relation to his allergies as he's allergic to tree nuts, seeds, eggs and mould (the black stuff which can form round the bath or under a pile of leaves in autumn). He's already up to speed with Leo's cancer diagnosis as the chemotherapy can have an impact on his allergies so it will be interesting to see what his immune system is doing now give the level of chemo his body has been through. We hope to also see his oncology consultant and his favourite Clic nurse Sarah as we've not seen her for weeks either.
Leo has done four sessions at nursery this week and off to his fifth today. We've also been swimming and tomorrow we're off to a panto in Bath, which is Leo's favourite story of Jack and the Beanstalk. Weekends have become so precious again now PJ is working and we're living a new normal life.
Friday, January 16, 2009
Monday, January 12, 2009
Doing Good
Even more normality with more swimming today, more school (for both PJ and Leo!) and catching up with Leo's Clic Sargent nurse.
In fact, we're so much into normality that Leo's swimming today was nearly as though he has always been swimming...nearly as though there was no gap between last April in Spain and today in a warm-ish indoor pool in the UK. I think we kind of forget that whilst our children undergo such major treatment for cancer, they still grow up.
They still go from being a 3 year 3 month old and now he's 3 weeks from being a lovely 4 year old, and what's got him to this point is normality, as well as the chemo, antibiotics, blood transfusions, general anaesthetics and radiotherapy. He is who he is because of all this as well as what he should be..if that makes sense?
Anyway, another day tomorrow. More school, more playing, no hospital..not for another week or so, and yet there'll no doubt be some pretend playing doctors and nurses with central lines and blood pressure being checked!
In fact, we're so much into normality that Leo's swimming today was nearly as though he has always been swimming...nearly as though there was no gap between last April in Spain and today in a warm-ish indoor pool in the UK. I think we kind of forget that whilst our children undergo such major treatment for cancer, they still grow up.
They still go from being a 3 year 3 month old and now he's 3 weeks from being a lovely 4 year old, and what's got him to this point is normality, as well as the chemo, antibiotics, blood transfusions, general anaesthetics and radiotherapy. He is who he is because of all this as well as what he should be..if that makes sense?
Anyway, another day tomorrow. More school, more playing, no hospital..not for another week or so, and yet there'll no doubt be some pretend playing doctors and nurses with central lines and blood pressure being checked!
Sunday, January 11, 2009
Wet Wet Wet
Finally, Leo has been able to do what he wanted to do as soon as his wigglies came out on Dec 23rd..we've been swimming and he absolutely loved it. We shouldn't be surprised as Leo was always a water baby whilst we lived in Spain and even before we went there, so we'll look to go swimming as much as possible in the weeks to come.
He's also been back at nursery school although was so tired he couldn't eat on Thursday so I kept him at home and we just chilled out a bit. Perhaps we were being a bit optimistic if we thought he'd just slot back in to five days a week. But a few hours each day and he's good for it. It means he still has enough energy to do other things like soft-play or swimming.
As the month goes by, we know a few other children who are finishing treatment this month so our hearts go out to them. Others are having their Hickmann lines out as they finished treatment a little while ago and it takes time to get a slot on the surgery list.
As for Leo, we're back at the hospital for an eye check-up which is very important given he keeps his eye shut now in the mornings for about an hour or so. After that, we have an MRI coming up too and another consultation with his oncologist who has emailed this week to see how Leo's doing.
Whilst it may be that Leo's treatment has finished, it's very true to say that this is the tricky bit now. During treatment, the cancer is essentially being 'treated', or at least you hope so and now, post-treatment, it's left to its own devices; life could be described as a waiting game. The next five years consists of waiting to see what happens. This could be construed as being quite negative or it could be seen as a positive because at the moment whatever makes up the lump of 'stuff' left behind after treatment is behaving so no worries. It also means that this 'waiting game' makes us grab life and get on with it. We're definitely doing more these days.
Our next task is to think about how we can fundraise for a real need at the hospitals where Leo's been treated or directly for the children being treated as well as a reserve for any further more experimental treatment Leo may require should he relapse.
He's also been back at nursery school although was so tired he couldn't eat on Thursday so I kept him at home and we just chilled out a bit. Perhaps we were being a bit optimistic if we thought he'd just slot back in to five days a week. But a few hours each day and he's good for it. It means he still has enough energy to do other things like soft-play or swimming.
As the month goes by, we know a few other children who are finishing treatment this month so our hearts go out to them. Others are having their Hickmann lines out as they finished treatment a little while ago and it takes time to get a slot on the surgery list.
As for Leo, we're back at the hospital for an eye check-up which is very important given he keeps his eye shut now in the mornings for about an hour or so. After that, we have an MRI coming up too and another consultation with his oncologist who has emailed this week to see how Leo's doing.
Whilst it may be that Leo's treatment has finished, it's very true to say that this is the tricky bit now. During treatment, the cancer is essentially being 'treated', or at least you hope so and now, post-treatment, it's left to its own devices; life could be described as a waiting game. The next five years consists of waiting to see what happens. This could be construed as being quite negative or it could be seen as a positive because at the moment whatever makes up the lump of 'stuff' left behind after treatment is behaving so no worries. It also means that this 'waiting game' makes us grab life and get on with it. We're definitely doing more these days.
Our next task is to think about how we can fundraise for a real need at the hospitals where Leo's been treated or directly for the children being treated as well as a reserve for any further more experimental treatment Leo may require should he relapse.
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