Who'd have thought this time a year ago we were planning a joint party with one of the nice families we knew in Spain for Leo's 3rd birthday and Joseph's 7th birthday. It was outside in the garden, blue skies, sunshine, bouncy castle and lots of fun indeed. One year on and we're not sure if this will be the last of Leo's birthdays which we will be celebrating. I am not being morbid or depressed about it...this is a fact. And as such, where we would normally just hope everything goes to plan, this year we're pulling all the stops out and desperate that Leo enjoys himself, whilst we also take time to appreciate him and all that he gives us as our son. Life is too short after all!!
We've heard back from the cancer consultant who in a very technical way has said that we should not read too much into the increased egg allergy, but that also there's only Leo with this cancer in this site at his age, in the world, and as such, little is really known about the chemo he's had on his specific cancer.
Tomorrow brings more hospital visits. This time his right eye is going to be checked and we're rather hoping that they do the tests they usually do at the end, right at the beginning instead of waiting through an hour or more of testing before checking his cataract / light sensitivity. It may well be that they'll decide to check the cataracts and back of his eye the next time he has a general anaesthetic which will be on or near February 17th for his next MRI.
His teachers at school have all made a point this week of saying that Leo really has come out of himself post-Christmas and that he's a pleasure to have in school. Similar statements were made when Leo was at King's College in Murcia and so it's nice to know that others mirror our feelings that the Leo we knew pre-cancer is now back, albeit a little older, wiser and somewhat institutionalised.
Wednesday, January 21, 2009
Monday, January 19, 2009
Unexpected Stress
We were at the hospital on Friday, primarily to have an appointment about Leo's mould allergy and his other allergies. Whilst there we had a meeting with his oncologist too who advised Leo now needs chest x-rays every other month. This is because if he relapses, it may not be in the primary site i.e. on the brain. It could relapse in his lungs. So a little surprise and actually with hindsight quite pleased we did not know this before as it's another major thing to stress about.
As it happens Leo's chest x-ray was clear so he's not relapsed yet.
His allergies though a little cause for concern as normally people who have had their immune system 'modulated' with chemotherapy and especially the type and amount that Leo has had, the tests for his allergies would give a 'false' low at this point post-treatment. However his allergy to eggs has increased whereas chemo normally 'resets' the system and the egg allergy usually disappears. So not quite sure if we should be reading into the fact the chemo didn't knock the egg allergy out of his system and the fact it's got worse. At Leo's age, cancer aside, it's highly unlikely he's going to grow out of his egg allergy now.
So just to see what his oncologist comes back with in terms of the chemo / allergy testing / false high debate?
Today's a new day...no time for stress.....
As it happens Leo's chest x-ray was clear so he's not relapsed yet.
His allergies though a little cause for concern as normally people who have had their immune system 'modulated' with chemotherapy and especially the type and amount that Leo has had, the tests for his allergies would give a 'false' low at this point post-treatment. However his allergy to eggs has increased whereas chemo normally 'resets' the system and the egg allergy usually disappears. So not quite sure if we should be reading into the fact the chemo didn't knock the egg allergy out of his system and the fact it's got worse. At Leo's age, cancer aside, it's highly unlikely he's going to grow out of his egg allergy now.
So just to see what his oncologist comes back with in terms of the chemo / allergy testing / false high debate?
Today's a new day...no time for stress.....
Friday, January 16, 2009
First Hospital Visit of 2009
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.
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.
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.
Monday, January 05, 2009
Pictures = Thousand Words
Leo wanted to have eyebrows and eyelashes for Christmas...unusual request for a 3 year old and the photo may not show the lashes and brows BUT hey, how much hair has he got? He has been so happy today in so many ways. He's been the school for a whole 5 hours and loved every minute. His teachers have also commented on how well Leo is looking and how sociable and responsible he is with all the children. Amazing!He has also had the longest bath in history and really enjoyed it as I bought some goggles for him as we're now able to go swimming now his chest has healed from his central line.
And he's also back in his own bed and even let me come back downstairs before he fell asleep! Woo hoo! Normality is upon us and with slight trepidation that at some point in the future, our new normality it will be upset again, we're going to grab our life by the horns.
Plus PJ had a good first day at school...work!
All in all, a good day.
Sunday, January 04, 2009
Normality Resumes / Starts Tomorrow
And so the new year is upon us and along with it comes normality. With Leo's energy levels now going through the roof, we think he is making up for lost time. It's almost as though he's eating and running about not just for now, but to make up for the months and months of chemo and radiotherapy last year.
We had planned to have Leo increase his time at nursery school to four 5-hour sessions per week but with his energy as it now is and our need for increased income, we'll explore a few more sessions each week very soon and then with PJ working full-time, I can then invest the time Leo's at school in building my businesses again.
Normality resumes tomorrow...here's hoping it stays that way for the foreseeable future...
Tomorrow is a new day in more ways than one, and we're all looking forward to it.
We had planned to have Leo increase his time at nursery school to four 5-hour sessions per week but with his energy as it now is and our need for increased income, we'll explore a few more sessions each week very soon and then with PJ working full-time, I can then invest the time Leo's at school in building my businesses again.
Normality resumes tomorrow...here's hoping it stays that way for the foreseeable future...
Tomorrow is a new day in more ways than one, and we're all looking forward to it.
Saturday, January 03, 2009
Happy 2009
Just back from Scotland where we've spent a week at the amazing Malcolm Sargent House in Prestwick. When we were told the house was on the beach and on a links golf course, we never could have believed it was really actually right on the beach and our bedroom looked out over the golf course, much to PJ's happiness.
Leo is doing great. His appetite is back with a vengeance and his hair is also growing rather quickly. Whilst his hair looks dark at the moment, it may end up curly and ginger first of all, before finding it's colour again. This often happens after chemo and we spoke with many families this last week, with whom we had the pleasure of meeting and sharing experiences with. A really fantastic way of spending the New Year week as we were all able to be ourselves and not worry if we were emotional or whatever during the course of the week.
The turning of the New Year has always had alot of significance for PJ and I as it's a time when we put the previous year behind us and plan some scheme for the following year. Well this year, the scheming has been taken out of our control for the first time, so no moving abroad, no hair-brained plan to invest lots of cash in risky businesses; this year it's all about trying to gain control of a somewhat normal life and give Leo an amazing life. Our focus has changed a little due to Leo's cancer as we used to take more risks, but now we need to settle down and enjoy different experiences to enrich Leo's and our lives in more ways than usual. Shame it takes your only child to have a life-threatening illness to focus your mind?!
Photos to follow...
Happy New Year one and all.
Leo is doing great. His appetite is back with a vengeance and his hair is also growing rather quickly. Whilst his hair looks dark at the moment, it may end up curly and ginger first of all, before finding it's colour again. This often happens after chemo and we spoke with many families this last week, with whom we had the pleasure of meeting and sharing experiences with. A really fantastic way of spending the New Year week as we were all able to be ourselves and not worry if we were emotional or whatever during the course of the week.
The turning of the New Year has always had alot of significance for PJ and I as it's a time when we put the previous year behind us and plan some scheme for the following year. Well this year, the scheming has been taken out of our control for the first time, so no moving abroad, no hair-brained plan to invest lots of cash in risky businesses; this year it's all about trying to gain control of a somewhat normal life and give Leo an amazing life. Our focus has changed a little due to Leo's cancer as we used to take more risks, but now we need to settle down and enjoy different experiences to enrich Leo's and our lives in more ways than usual. Shame it takes your only child to have a life-threatening illness to focus your mind?!
Photos to follow...
Happy New Year one and all.
Wednesday, December 24, 2008
Christmas 2008
Hope you have a good Christmas and enjoy yourselves surrounded by people who care about you; after all, isn't that what we all want at this time of year?
We let Leo open some presents yesterday after his operation and so he opened the gifts which arrived from his friends in Spain. The picture above is the only one Leo would let me take this evening; he is all dressed up as Sporticus from Lazytown; an outfit sent over by Dawn, Terry, Neva and Lexi. And Leo's energy is just about the same as this cartoon character's now he's feeling a bit better and all the chemo is out of his system.
Same could not be said for today as Leo's chest is very sore where his line was taken out. It has been there since July so the tissue which grows around it can cause it to be very sore when they take it out. So after a brief play at a new soft play place nearby, where Leo took great pleasure in sliding down the slides on his tummy and chest, it was home for a grumpy afternoon. The fact that Father Christmas may be making an appearance overnight has kept him going this evening, but Leo is your typical male of the species...just because you can take pain-killers, does not mean you have to...even if you're in lots of pain!!
Hopefully he'll be feeling a bit better tomorrow and no doubt more presents are going to help.
Merry Christmas
Tuesday, December 23, 2008
BIG Day, and not because Santa visits in 2 days!
It's been a big, big, big day today as Leo has had his central line removed!! Woo hoo!
Such a huge factor in life returning to a new normality. Apart from the fact that it meant more surgery and another general anaesthetic for Leo, it brings to a close a strange and very, very challenging year.
At least now, Leo can start to feel like any other child; his hair is growing back, and although he told someone today he'd like eyelashes and eyebrows for Christmas, they're growing back also. He should be asking for toys and games, not hair!! But with hope, today will be the last time we have to visit the hospital until February, when the next MRI scan is planned.
Timing is a funny thing as we spent last Christmas here in the UK and vowed to try to spend more Christmas's in sunnier climes such as Spain due to the bad weather here. But this Christmas, although it's cold and damp, we're thankful to have been here in the UK when Leo was diagnosed and thankful that we can call on the NHS and the excellent Clic Sargent community nursing team if we're at all concerned.
So two days to Christmas 2008 and so much has happened since last Christmas.
Moving countries, moving house, being homeless and being fortunate enough to be able to live at Clic House in Bristol, my operation which included an hysterectomy and bowel surgery and oh, that small thing called cancer!
Who'd have thought it, eh? Doesn't this kind of thing always happen to someone else's child who you read about in magazines or newspapers? You never actually think it'll happen to your only child.
But it has and he's through the treatment and now we press on.
Life will never be the same again but in some ways, this is a positive. Whilst we'd prefer to be living our lives in Spain and enjoying our friendships which were developing there, our lives have taken a different twist and unless we embrace it, we cannot and will not move forward.
Who knows what is going to be happening this time next year but our prayers are constantly asking that Leo be with us in 12 months time. This cannot be his last Christmas.
I have a feeling 2009's New Year's Resolutions may be rather on the large side!! We've some time for reflection between now and then though as PJ, Leo and I are off to Ayr in Scotland to spend time at Clic House which will allow us to not feel guilty about our emotions and feelings during the New Year period. We didn't want to feel we were upsetting or disrupting other people's New Year celebrations by spending time with our friends in and around Bristol in the UK, and so we're taking the opportunity to meet and spend time with families and children who know where we're at, and who knows, we may even be able to give hope and support to other families who are going along this rollercoaster of a journery called childhood cancer.
Thank you once again for all your support and please know that if I could jump on a plane to everyone and give hugs and kisses all round, then I would! And Leo would not be far behind me...he's in a very tactile place right now so you would not get away without strong hugs from a boy who is getting stronger daily.
Thank you once again, and may your Christmas and New Year celebrations be filled with joy, health and much love.
Such a huge factor in life returning to a new normality. Apart from the fact that it meant more surgery and another general anaesthetic for Leo, it brings to a close a strange and very, very challenging year.
At least now, Leo can start to feel like any other child; his hair is growing back, and although he told someone today he'd like eyelashes and eyebrows for Christmas, they're growing back also. He should be asking for toys and games, not hair!! But with hope, today will be the last time we have to visit the hospital until February, when the next MRI scan is planned.
Timing is a funny thing as we spent last Christmas here in the UK and vowed to try to spend more Christmas's in sunnier climes such as Spain due to the bad weather here. But this Christmas, although it's cold and damp, we're thankful to have been here in the UK when Leo was diagnosed and thankful that we can call on the NHS and the excellent Clic Sargent community nursing team if we're at all concerned.
So two days to Christmas 2008 and so much has happened since last Christmas.
Moving countries, moving house, being homeless and being fortunate enough to be able to live at Clic House in Bristol, my operation which included an hysterectomy and bowel surgery and oh, that small thing called cancer!
Who'd have thought it, eh? Doesn't this kind of thing always happen to someone else's child who you read about in magazines or newspapers? You never actually think it'll happen to your only child.
But it has and he's through the treatment and now we press on.
Life will never be the same again but in some ways, this is a positive. Whilst we'd prefer to be living our lives in Spain and enjoying our friendships which were developing there, our lives have taken a different twist and unless we embrace it, we cannot and will not move forward.
Who knows what is going to be happening this time next year but our prayers are constantly asking that Leo be with us in 12 months time. This cannot be his last Christmas.
I have a feeling 2009's New Year's Resolutions may be rather on the large side!! We've some time for reflection between now and then though as PJ, Leo and I are off to Ayr in Scotland to spend time at Clic House which will allow us to not feel guilty about our emotions and feelings during the New Year period. We didn't want to feel we were upsetting or disrupting other people's New Year celebrations by spending time with our friends in and around Bristol in the UK, and so we're taking the opportunity to meet and spend time with families and children who know where we're at, and who knows, we may even be able to give hope and support to other families who are going along this rollercoaster of a journery called childhood cancer.
Thank you once again for all your support and please know that if I could jump on a plane to everyone and give hugs and kisses all round, then I would! And Leo would not be far behind me...he's in a very tactile place right now so you would not get away without strong hugs from a boy who is getting stronger daily.
Thank you once again, and may your Christmas and New Year celebrations be filled with joy, health and much love.
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