He's been such a sweetie today; after a lot of heartache as parents this week, to see him excited about being back at the hospital in Bristol, gave us feelings which make us both happy and sad. Happy that he's okay about being at the hospital but sad that he even has to be feeling like that in the first place.
Leo and I had lots of fun today in the playroom on the ward and he was running the place after an hour or so; bossing around older children and telling them what's what! He was in a good place today and was cute to the doctor who examined him to make sure he was fit for chemo. This is his fifth cycle so that's over halfway for this protocol so three cheers for more chemo! The more he has, the closer Leo is to the end of this protocol.
There have been many emails and calls of support this week and they're all so welcome. Leo is one lucky little chap to have so many people rooting for him and PJ and I know we have lots of support too. We have found it difficult at times but are trying to keep things together and keep our emotions in check so as Leo does not feed off of any negativity. He and we all need positive vibes and indeed, Cylla, the Clic Sargent Social Worker, gave me some interesting info about how happy feelings significantly contribute towards why children respond well to treatment.
Leo's best friend from school is coming across in just over a week's time to see us and so that will help as it'll be Leo's first week of radiotherapy. If yesterday's visit to the Marsden and the general anaesthetic is anything to go by, then this six weeks of treatment is likely to be very tough on Leo and all of us. We thought we were all coping pretty well and that Leo was doing well with the chemo but this next stage will be a real test.
Maybe we've been blind to this part of the protocol / treatment but now it's here, we're all quite scared about it including Leo who was asking me yesterday 'what are they going to do to me?' and shaking when we took him in to the CT scanning room prior to the general anaesthetic. But then with people around to help and support, we can and will get through this for Leo's sake. He's too precious to think of life without him and so there's no option but to have to sign the consent for the daily general anaesthetics for six weeks and the radiotherapy treatment, despite all the scary effects and late effects of such a treatment for a boy of his age.
Thank you again for you support and please know that if your emails reach us, we always respond so if you've not had a response, it's likely because they've not arrived; so here are our personal email addresses (by the way, the comments function is now not in operation due to the nature of the personal messages being sent to us via the blog which we felt best suited to keep private);
helenwingrove@yahoo.com
pjsanders67@googlemail.com
Feel free to use these if you'd like to touch base and we will always respond. And once again, thank you with all I have for your support, prayers and phone calls this week. They've been appreciated more than ever.
Saturday, August 02, 2008
Wednesday, July 30, 2008
Learning Opportunities
Had a tricky but interesting day at the Royal Marsden Hospital in Surrey. Felt strange being somewhere new for us so Leo must have felt even more worried about things. His doc, Frank Saran, is awesome and we totally trust him. He is just one of those chaps you trust immediately. Just as well as we kind of have to really. Not much choice. He asked if we needed to be 'sold' on radiotherapy to begin with, and neither of us said yes, but then as he spoke and told us about long term effects, it's clear that even if Leo beats this thing, his life won't be a walk in the park. We've had a crash course in effects and late effects of radiotherapy today and both our heads are spinning and probably will be for a while to come. I catch PJ just shaking his head every now and then at the prospect of things to come.
There's a very high risk of losing eyesight to his right eye due to the need for radiation to the optic nerve as the tumour was compressing on it initially and so they have to treat every area affected when he was diagnosed with a 2cm margin so that includes the brain, carotid artery, pituitary gland and eyeball. We have to ignore the shrinking of the tumour this far as all areas which were present or affected when we took Leo to the hospital initially have to be treated. As we've previously been told; the tumour is like a wave - when it hits the beach and then recedes, it leaves behind things that in this case, an MRI will never be able to show you. So the areas which look like the tumour has shrunk away from may still have dormant or live cancer cells not visible by any method available.
Other high risk stuff includes risk of stroke in his 40s, up to 4% risk of brain tumours in his early adult years and a significant risk of slowed learning due to the radiation to the brain. So just as well PJ and I are both so keen on teaching and learning outside of the classroom already - indeed, Leo asked Teacher Daddy, as he called him, to take him to 'school' in our new lounge on Sunday so he could do some learning! It was so cute.
On the journey to the hospital this morning, we heard the most awesome song which was a chilled-out backing track with a US-accented, deep-voiced man reading the following words. And as we heard each line, PJ and I just kept nodding and saying 'that's true..that's so true' to each phrase. We've decided therefore to locate it and listen to it daily, so we keep in mind the important things and let the other stuff slide!
Hope you enjoy...
Artist (Band): Baz Luhrmann
Ladies and Gentlemen of the class of '97.
Wear sunscreen.
If I could offer you one tip for the future, sunscreen would be it.
The long-term benefits of sunscreen have been proved by scientists whereas the rest of my advice has no basis more reliable than my own meandering experience...
I will dispense this advice now...
Enjoy the power and beauty of your youth; oh, nevermind, you will not understand the power and beauty of your youth until they've faded.
But trust me, in 20 years you'll look back at photos of yourself and recall in a way you can't grasp now, how much possibility lay before you and how fabulous you really looked.
You are NOT as fat as you imagine.
Don't worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum.
The real toubles in life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday
Do one thing everyday that scares you.
Sing.
Don't be reckless with other people's hearts.
Don't put up with people who are reckless with your's.
Floss.
Don't waste your time on jealousy; sometimes you're ahead, sometimes you're behind.
The race is long, and in the end, it's only with yourself.
Remember compliments you receive.
Forget the insults.
If you suceed in doing this, tell me how.
Keep your old love letters. Throw away your old bank statements.
Stretch.
Don't feel guilty if you don't know what you want to do with your life.
The most interesting people I know didn't know at 22 what they wanted to do with their lives; some of the most interesting 40 year olds I know still don't.
Get plenty of calcium.
Be kind to your knees, you'll miss them when they're gone.
Maybe you'll marry, maybe you won't.
Maybe you'll have children, maybe you won't.
Maybe you'll divorce at 40.
Maybe you'll dance the funky chicken on your 75th wedding anniversary.
Whatever you do, don't congratulate yourself too much or berate yourself either - your choices are half chance, so are everybody else's.
Enjoy your body, use it every way you can... don't be afraid of it, or what other people think of it... it's the greatest instrument you'll ever own.
Dance... even if you have nowhere to do it but in your own living room.
Read the directions, even if you don't follow them.
Do NOT read beauty magazines they will only make you feel UGLY.
CHORUS
Brother and sister together we'll make it through.
Someday your spirit will take you and guide you there.
I know you've been hurting, but I've been waiting to be there for you.
And I'll be there just helping you out whenever I can.
Get to know your parents, you never know when they might be gone for good.
Be nice to your siblings; they're your best link to your past and the people most likely to stick with you in the future
Understand that friends come and go, but for the precious few you should hold on.
Work hard to bridge the gaps in geography and lifestyle because the older you get, the more you need the people you knew when you were young.
Live in New York City once, but leave before it makes you hard.
Live in Northern California once, but leave before it makes you soft.
Travel.
Accept certain inalienable truths.
Prices will rise,
Politicians will philander, you too will get old.
And when you do, you'll fantasize that when you were young, prices were reasonable, politicians were noble, and children respected their elders.
Respect your elders.
Don't expect anyone else to support you.
Maybe you have a trust fund, maybe you'll have a wealthy spouse; but you never know when either one might run out.
Don't mess too much with your hair, or by the time you're 40, it will look 85.
Be careful whose advice you buy, but, be patient with those who supply it.
Advice is a form of nostalgia; dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts, and recycling it for more than it's worth.
But trust me on the sunscreen.
CHORUS
Everybody's free. Everybody's free.
There's a very high risk of losing eyesight to his right eye due to the need for radiation to the optic nerve as the tumour was compressing on it initially and so they have to treat every area affected when he was diagnosed with a 2cm margin so that includes the brain, carotid artery, pituitary gland and eyeball. We have to ignore the shrinking of the tumour this far as all areas which were present or affected when we took Leo to the hospital initially have to be treated. As we've previously been told; the tumour is like a wave - when it hits the beach and then recedes, it leaves behind things that in this case, an MRI will never be able to show you. So the areas which look like the tumour has shrunk away from may still have dormant or live cancer cells not visible by any method available.
Other high risk stuff includes risk of stroke in his 40s, up to 4% risk of brain tumours in his early adult years and a significant risk of slowed learning due to the radiation to the brain. So just as well PJ and I are both so keen on teaching and learning outside of the classroom already - indeed, Leo asked Teacher Daddy, as he called him, to take him to 'school' in our new lounge on Sunday so he could do some learning! It was so cute.
On the journey to the hospital this morning, we heard the most awesome song which was a chilled-out backing track with a US-accented, deep-voiced man reading the following words. And as we heard each line, PJ and I just kept nodding and saying 'that's true..that's so true' to each phrase. We've decided therefore to locate it and listen to it daily, so we keep in mind the important things and let the other stuff slide!
Hope you enjoy...
Artist (Band): Baz Luhrmann
Ladies and Gentlemen of the class of '97.
Wear sunscreen.
If I could offer you one tip for the future, sunscreen would be it.
The long-term benefits of sunscreen have been proved by scientists whereas the rest of my advice has no basis more reliable than my own meandering experience...
I will dispense this advice now...
Enjoy the power and beauty of your youth; oh, nevermind, you will not understand the power and beauty of your youth until they've faded.
But trust me, in 20 years you'll look back at photos of yourself and recall in a way you can't grasp now, how much possibility lay before you and how fabulous you really looked.
You are NOT as fat as you imagine.
Don't worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum.
The real toubles in life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday
Do one thing everyday that scares you.
Sing.
Don't be reckless with other people's hearts.
Don't put up with people who are reckless with your's.
Floss.
Don't waste your time on jealousy; sometimes you're ahead, sometimes you're behind.
The race is long, and in the end, it's only with yourself.
Remember compliments you receive.
Forget the insults.
If you suceed in doing this, tell me how.
Keep your old love letters. Throw away your old bank statements.
Stretch.
Don't feel guilty if you don't know what you want to do with your life.
The most interesting people I know didn't know at 22 what they wanted to do with their lives; some of the most interesting 40 year olds I know still don't.
Get plenty of calcium.
Be kind to your knees, you'll miss them when they're gone.
Maybe you'll marry, maybe you won't.
Maybe you'll have children, maybe you won't.
Maybe you'll divorce at 40.
Maybe you'll dance the funky chicken on your 75th wedding anniversary.
Whatever you do, don't congratulate yourself too much or berate yourself either - your choices are half chance, so are everybody else's.
Enjoy your body, use it every way you can... don't be afraid of it, or what other people think of it... it's the greatest instrument you'll ever own.
Dance... even if you have nowhere to do it but in your own living room.
Read the directions, even if you don't follow them.
Do NOT read beauty magazines they will only make you feel UGLY.
CHORUS
Brother and sister together we'll make it through.
Someday your spirit will take you and guide you there.
I know you've been hurting, but I've been waiting to be there for you.
And I'll be there just helping you out whenever I can.
Get to know your parents, you never know when they might be gone for good.
Be nice to your siblings; they're your best link to your past and the people most likely to stick with you in the future
Understand that friends come and go, but for the precious few you should hold on.
Work hard to bridge the gaps in geography and lifestyle because the older you get, the more you need the people you knew when you were young.
Live in New York City once, but leave before it makes you hard.
Live in Northern California once, but leave before it makes you soft.
Travel.
Accept certain inalienable truths.
Prices will rise,
Politicians will philander, you too will get old.
And when you do, you'll fantasize that when you were young, prices were reasonable, politicians were noble, and children respected their elders.
Respect your elders.
Don't expect anyone else to support you.
Maybe you have a trust fund, maybe you'll have a wealthy spouse; but you never know when either one might run out.
Don't mess too much with your hair, or by the time you're 40, it will look 85.
Be careful whose advice you buy, but, be patient with those who supply it.
Advice is a form of nostalgia; dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts, and recycling it for more than it's worth.
But trust me on the sunscreen.
CHORUS
Everybody's free. Everybody's free.
Tuesday, July 29, 2008
Long Day
Leo had a new line put in today and was quite upset about it - even more so when we took him down to theatre and this time we walked him straight into theatre, as opposed to a nice small anaesthetic room. He was trembling like mad in my arms and really very scared, and both PJ and I admitted we would have been the same. There were lots of people in scrubs in there and large lights and machines and things..poor Leo. He had some gas and air to put him to sleep initially and then about 90 minutes later we went down to collect him from recovery and we could hear him screaming from down the corridor. Sometimes he just won't let anyone near him apart from PJ or I. Mind you, we do have to remind ourselves that he is only three and a half.
We've only just got back so it's been a long day for us all, especially Leo. His chest kept bleeding so the nurses kept waiting for it to stop or at least recede before discharging him. Now we're home, it's funny to say he's being a typical man (have to look for humour where you can get it!); I keep offering him Calpol to help his neck and chest feel better but to no avail. What is it about men and pain-killers?
I have deleted the post of yesterday as it kind of defeated the object as the post itself probably offended people in and of itself. I've come to the realisation that there are just some battles you cannot win and I am not going to waste any more energy on things where nothing I do can change people's minds. Leo is my and our primary focus and so he needs positive energy around him 150% of the time. So that's how it is.
My mission is to keep Leo happy and comfortable and to get through this time in as good shape as possible. Feeling like I am going mad because others judge what we, as Leo's parents do, as purely being down to me or my thoughts, is counter-productive. What I will keep on record is that PJ and I are and have always been agreed on what we do with Leo and how we keep his emotions steady during the good days and the bad. Nothing has happened from the start of this where we've not been agreed, from where to buy lunch to what we should do of an evening to whether we need to call the doctors about his line infection.
So tomorrow's another day...off to Surrey for a clinic appointment so we'll find out more about radiotherapy and its overall effects. Had a good read of Leo's notes today (volume 1 - they're about 5 inches thick so volume 2 will start very soon, no doubt), and realised that as his tumour is alveolar, he will have the highest dose of radiation. The initial tumour was also 4.3cm cubed and those with 5cm cubed have a 10-20% chance of survival so we have to think him lucky he's not in that group.
We have another appointment at the Royal Marsden on Friday which includes planning the therapy with the actual machine they'll use as well as producing a shell cast for him to lie still in for each of the 30 sessions. He'll have a general anaesthetic for each session so he won't have to worry about wriggling about!
Chemo again this weekend, this time pushed back to Saturday as we won't be finished until it's too late to start back in Bristol as not sure how long it'll take to get back from Surrey.
Finally for the notes of support overnight and today, thank you sincerely; guess I lost sight of the caring love and support of those who know me, and know that we are only doing what any parent would try to do for their child in the same situation!
Thanks again.
We've only just got back so it's been a long day for us all, especially Leo. His chest kept bleeding so the nurses kept waiting for it to stop or at least recede before discharging him. Now we're home, it's funny to say he's being a typical man (have to look for humour where you can get it!); I keep offering him Calpol to help his neck and chest feel better but to no avail. What is it about men and pain-killers?
I have deleted the post of yesterday as it kind of defeated the object as the post itself probably offended people in and of itself. I've come to the realisation that there are just some battles you cannot win and I am not going to waste any more energy on things where nothing I do can change people's minds. Leo is my and our primary focus and so he needs positive energy around him 150% of the time. So that's how it is.
My mission is to keep Leo happy and comfortable and to get through this time in as good shape as possible. Feeling like I am going mad because others judge what we, as Leo's parents do, as purely being down to me or my thoughts, is counter-productive. What I will keep on record is that PJ and I are and have always been agreed on what we do with Leo and how we keep his emotions steady during the good days and the bad. Nothing has happened from the start of this where we've not been agreed, from where to buy lunch to what we should do of an evening to whether we need to call the doctors about his line infection.
So tomorrow's another day...off to Surrey for a clinic appointment so we'll find out more about radiotherapy and its overall effects. Had a good read of Leo's notes today (volume 1 - they're about 5 inches thick so volume 2 will start very soon, no doubt), and realised that as his tumour is alveolar, he will have the highest dose of radiation. The initial tumour was also 4.3cm cubed and those with 5cm cubed have a 10-20% chance of survival so we have to think him lucky he's not in that group.
We have another appointment at the Royal Marsden on Friday which includes planning the therapy with the actual machine they'll use as well as producing a shell cast for him to lie still in for each of the 30 sessions. He'll have a general anaesthetic for each session so he won't have to worry about wriggling about!
Chemo again this weekend, this time pushed back to Saturday as we won't be finished until it's too late to start back in Bristol as not sure how long it'll take to get back from Surrey.
Finally for the notes of support overnight and today, thank you sincerely; guess I lost sight of the caring love and support of those who know me, and know that we are only doing what any parent would try to do for their child in the same situation!
Thanks again.
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